I have been realising this week, how important trustworthy mentors can be on the road to recovery. Finding people who understand, or at the very least sympathise and support my plight can be difficult enough. Finding people who will encourage and help me on the recovery path is the next step. As I mentioned I read books and continue to do so. I have found websites and teachers who support my cause.
Now that I am at the stage where i feel I want to leave the house a bit more, and meet different people who can help me in the different stages of my improvement. I want to create relationships which will stay with me for longer. By working through different concepts and building on my understanding of ME as a physical illness I have a better idea of what might help. It was just what I needed when I found the Qi treatment option three weeks ago.
I could just continue as I am, YouTube yoga classes and slowly beginning to walk a bit further, find myself a little more strength and find a new motivation along side my daily routine. Keeping myself going throughout the week is difficult. I know I need something happening in my diary every week, or fortnight to give me inspiration, something that doesn't rely on me forcing it to happen. If I can't make muffins on a Wednesday because I am just so exhausted when I drag myself out of bed, then what am I going to do? I've started having a visit from a friend very week, who comes round for 30 minutes on a Monday evening and reads to me. We needed to keep in touch, her coming round for a chat was getting tiring as we wanted to talk so much and catch up that it went on too long! (i did love it though!) So 30 minutes every week is do-able and really nice to know it's there.
So where do I go from here? I have contacted an holistic therapist who works nearby, she offers various therapies including Yoga therapy and meditation classes, along with Reiki and Indian head massage, so I will be interested to find what she might be able to offer and discover some new ideas along the way.
Finding and choosing where to go and who to trust can be difficult, I know with builders and plumbers the best way to go is usually word-of-mouth, but I don't know anyone who has private therapy other than seeing a chiropodist for back pain, so am at a bit of a loss. I have to stab in the dark and know that if they turn out to be untrustworthy, I can bad-mouth them to the rest of the district and leave them without patients for a long time! (my recent experience is not sitting very well, sorry to be sounding so cynical!)
Tuesday 31 July 2012
Monday 30 July 2012
Olympic Fever
No I don't have a fever! But I do have Olympic fever. I have loved touching base this weekend. It has definitely been necessary. My husband and I spent some quality time together this Saturday morning. We went to a nearby National Trust estate and he wheeled me around the ground floor of the house, where I played the piano and we saw some beautiful paintings. The cafe/restaurant was greatly appreciated, with time for a piece of cake and coffee. Then to top it all we had some specialist creamy vanilla ice cream. The visit wasn't all about stuffing our faces as the grounds were amazing, as the storm clouds were threatening over head, we took a couple of great photos. So I managed a bit of walking (as the gravel/grit path was not an easy ride for the wheelchair!) and enjoyed a couple of hours out of the house.
After staying up to past midnight to see the opening ceremony I have been tempted to view even more. The coverage is amazing. Thanks to having the iPad, and a much improved download speed, coincidentally, just this weekend, I can watch whichever live sport I like on the BBC website.
I have the cross country eventing on at the moment and intend to see the diving and swimming later.
The second British rider is going around at the moment, once she is finished I must give myself some love and go and lie in the garden to enjoy the sun while it lasts!
OK, I'll watch the diving first!
After staying up to past midnight to see the opening ceremony I have been tempted to view even more. The coverage is amazing. Thanks to having the iPad, and a much improved download speed, coincidentally, just this weekend, I can watch whichever live sport I like on the BBC website.
I have the cross country eventing on at the moment and intend to see the diving and swimming later.
The second British rider is going around at the moment, once she is finished I must give myself some love and go and lie in the garden to enjoy the sun while it lasts!
OK, I'll watch the diving first!
Sunday 29 July 2012
Slow Down You Move Too Fast
I'm sure many of you will realise that I am quoting the Simon and Garfunkel song there! The phrase sums up a very important point that ME patients need to keep in mind.
With stress being such a fundamental factor in ME, rushing at any point during the day can only encourage more stress. This has be a key part of why much of the Graded Exercise Therapy has not worked; by doing an activity for only two minutes, the natural instinct is to do as much of that activity as you can in that two minutes- putting washing on the line quickly or cleaning the bathroom sink quickly, chopping vegetables quickly or reading quickly.
Rushing causes mistakes which need to be reversed and if not possible to reverse the consequences form those mistakes then have to be followed up. A simple mistake such as knocking over a drink in your rush to organise your breakfast can have many disastrous effects which suggest more rushing and stress. The instinct would be to rush quickly and find a cloth to clear the mess before it makes even more mess by dripping on the carpet from the edge of the tray, or even more mess by also reaching the clean washing, which is sitting in a pile at the end of the table!
By practising relaxation and meditation the brain is encouraged to take things more slowly. You will notice over time how much calmer the rest of your life becomes. I would laugh about the disasters in life in a couple of hours before but sometimes it might take a few days for the big crises! Now a spilled drink, is a spilled drink. Material things can be damaged and mended- OK an iPhone falling in a bath might not be such a great option for quick laughter, but such luxuries are on home insurance and can be replaced, so laugh about it, tell your mates, enjoy all their stupid stories too- we've all done it! Even what has happen in the last week(link) gave me a laugh very quickly, I was able to even write a post and not feel too embarrassed. Yes it was a stupid mistake and I was sucked in. But I am in a vulnerable position and I accept that, a life's lesson was learned and I am thrilled, elated to be out of it before it went too far. I am also in a calm position, a relaxed position, a slowing down position.
Give it a go, everyone, ME or not, we all need a bit of a laugh and to quote another great song: "The sun'll come out, tomorrow..."
Let's let it come out today!
Slow down, don't move too fast
With stress being such a fundamental factor in ME, rushing at any point during the day can only encourage more stress. This has be a key part of why much of the Graded Exercise Therapy has not worked; by doing an activity for only two minutes, the natural instinct is to do as much of that activity as you can in that two minutes- putting washing on the line quickly or cleaning the bathroom sink quickly, chopping vegetables quickly or reading quickly.
Rushing causes mistakes which need to be reversed and if not possible to reverse the consequences form those mistakes then have to be followed up. A simple mistake such as knocking over a drink in your rush to organise your breakfast can have many disastrous effects which suggest more rushing and stress. The instinct would be to rush quickly and find a cloth to clear the mess before it makes even more mess by dripping on the carpet from the edge of the tray, or even more mess by also reaching the clean washing, which is sitting in a pile at the end of the table!
By practising relaxation and meditation the brain is encouraged to take things more slowly. You will notice over time how much calmer the rest of your life becomes. I would laugh about the disasters in life in a couple of hours before but sometimes it might take a few days for the big crises! Now a spilled drink, is a spilled drink. Material things can be damaged and mended- OK an iPhone falling in a bath might not be such a great option for quick laughter, but such luxuries are on home insurance and can be replaced, so laugh about it, tell your mates, enjoy all their stupid stories too- we've all done it! Even what has happen in the last week(link) gave me a laugh very quickly, I was able to even write a post and not feel too embarrassed. Yes it was a stupid mistake and I was sucked in. But I am in a vulnerable position and I accept that, a life's lesson was learned and I am thrilled, elated to be out of it before it went too far. I am also in a calm position, a relaxed position, a slowing down position.
Give it a go, everyone, ME or not, we all need a bit of a laugh and to quote another great song: "The sun'll come out, tomorrow..."
Let's let it come out today!
Slow down, don't move too fast
Saturday 28 July 2012
Dream Number Two
How I need another five minutes to dream...
I am on my hands and knees, listening to birds darting through the sky, to birds singing whilst feeding their hungry chicks, to bees buzzing as they pass me and settle on flower after flower. I am weeding, digging, enjoying my surroundings. Loving the fact that what I have created is mine. Our garden to do with as we wish. My gardening has created a festival of colour, light, sounds, shadow, hidden spaces for wildlife, vegetables growing in the ground reaching out for every last drop of water I can give them with the hose- because next year will be a fruitful, warm, joyful summer, with days of calm, cloudless, skies and barbecues, endless bountiful cheesecakes and ice-creams from April until September.
Now I know I am dreaming!
So I love gardening and I now believe I can be a real gardener rather than a frustrated gardener. I can do as my parents have done for as long as I can remember; tend the garden every weekend, enjoy the wildlife that is encouraged and find pleasure in sitting in different places with cups of tea and enjoying the fruits of their labour. Our garden has gone to pot this year. I have managed very little. The Postman will tell you that I occasionally have the courtesy to make sure the path to the front door is clear of overhanging trees and weeds. So frustrated I have been for years, as much as the garden deemed necessary, was too much for me, for ME. Doing a little and appearing to achieve even less was heartbreaking. This year I have agreed to do practically nothing and so be it. My friend declare last week that she loved it, as it was like an English country cottage garden. Foxgloves have appeared from nowhere this year and filled the garden with colour in May and June. Small weeds, tall and spindly, short and creeping, are taking over now and are thriving. The birds and insects are loving this environment, I have also been spying butterflies and lots of moths too, so something is working. I have always wanted a garden full of plants, full of wildlife and full of life.
Next year and for years to come I will start to create even more of that vision than is here now and I look forward to it with great contentment.
I am on my hands and knees, listening to birds darting through the sky, to birds singing whilst feeding their hungry chicks, to bees buzzing as they pass me and settle on flower after flower. I am weeding, digging, enjoying my surroundings. Loving the fact that what I have created is mine. Our garden to do with as we wish. My gardening has created a festival of colour, light, sounds, shadow, hidden spaces for wildlife, vegetables growing in the ground reaching out for every last drop of water I can give them with the hose- because next year will be a fruitful, warm, joyful summer, with days of calm, cloudless, skies and barbecues, endless bountiful cheesecakes and ice-creams from April until September.
Now I know I am dreaming!
So I love gardening and I now believe I can be a real gardener rather than a frustrated gardener. I can do as my parents have done for as long as I can remember; tend the garden every weekend, enjoy the wildlife that is encouraged and find pleasure in sitting in different places with cups of tea and enjoying the fruits of their labour. Our garden has gone to pot this year. I have managed very little. The Postman will tell you that I occasionally have the courtesy to make sure the path to the front door is clear of overhanging trees and weeds. So frustrated I have been for years, as much as the garden deemed necessary, was too much for me, for ME. Doing a little and appearing to achieve even less was heartbreaking. This year I have agreed to do practically nothing and so be it. My friend declare last week that she loved it, as it was like an English country cottage garden. Foxgloves have appeared from nowhere this year and filled the garden with colour in May and June. Small weeds, tall and spindly, short and creeping, are taking over now and are thriving. The birds and insects are loving this environment, I have also been spying butterflies and lots of moths too, so something is working. I have always wanted a garden full of plants, full of wildlife and full of life.
Next year and for years to come I will start to create even more of that vision than is here now and I look forward to it with great contentment.
Friday 27 July 2012
Blimey That Was Close!
What was a close shave was that the Qi centre I started learning with a couple of weeks ago went further than just a centre to help people. I am sure that many Qi healers help people without asking much back. I have read about healers in Korea who heal and ask nothing, as payment in monetary or any other form removes the idea of helping other people.
People who need help are vulnerable. This Qi centre wanted to take us further, myself and my husband. I was receiving amazing things from the treatments- and I felt a difference. Just with a 15 minute treatment I felt refreshed, in some cases even a relief, a floating sensation. It can be described as a form of inducing relaxation, removing tension and acupuncture points are known to achieve this and scientifically proven to achieve this.
So what else were they asking...? The concept was taken further. We all have spirits around us at all times, spirits from our ancestors, they were suggesting. Spiritual healing is available in many forms and as I have not experienced any other I will not comment on them. The big difference here was not only monetary but it was cult status. Leading towards giving up friends, living an isolated life with only a few of the other members, offering the same options to more vulnerable people.
I love the fact that they go out and give treatments to firemen, paramedics, the sick and homeless in shelters and around the streets, children in clubs and offer their services there for free. But the accounts available to see at the government charity commission online don't add up, neither does the extortionate fees for one hour's chanting every day for 49 days to heal the ancestors spirits (they can do chanting for so many people all at once that if they have only one session booked during that day, that is all that they might do)
I understand in Africa there are ceremonies that say goodbye to the spirits as well as the body, it is equivalent to how the Christian world has created the funeral.As much as I believe in giving, as long as I remain vulnerable and need extra help before I can start giving to others, I would rather give what I can myself and help myself first. Giving so much to a charity and buying into a religion for 100 days training and 49 days ancestral healing, for what seems more like the fees of a wedding before I've met the man and understand what a wedding or marriage actually signifies, is not something I'm planning on doing right now! I've enough on my plate!
People who need help are vulnerable. This Qi centre wanted to take us further, myself and my husband. I was receiving amazing things from the treatments- and I felt a difference. Just with a 15 minute treatment I felt refreshed, in some cases even a relief, a floating sensation. It can be described as a form of inducing relaxation, removing tension and acupuncture points are known to achieve this and scientifically proven to achieve this.
So what else were they asking...? The concept was taken further. We all have spirits around us at all times, spirits from our ancestors, they were suggesting. Spiritual healing is available in many forms and as I have not experienced any other I will not comment on them. The big difference here was not only monetary but it was cult status. Leading towards giving up friends, living an isolated life with only a few of the other members, offering the same options to more vulnerable people.
I love the fact that they go out and give treatments to firemen, paramedics, the sick and homeless in shelters and around the streets, children in clubs and offer their services there for free. But the accounts available to see at the government charity commission online don't add up, neither does the extortionate fees for one hour's chanting every day for 49 days to heal the ancestors spirits (they can do chanting for so many people all at once that if they have only one session booked during that day, that is all that they might do)
I understand in Africa there are ceremonies that say goodbye to the spirits as well as the body, it is equivalent to how the Christian world has created the funeral.As much as I believe in giving, as long as I remain vulnerable and need extra help before I can start giving to others, I would rather give what I can myself and help myself first. Giving so much to a charity and buying into a religion for 100 days training and 49 days ancestral healing, for what seems more like the fees of a wedding before I've met the man and understand what a wedding or marriage actually signifies, is not something I'm planning on doing right now! I've enough on my plate!
Thursday 26 July 2012
Everyone's Path Is Different
Recovering from ME can been done in so many ways. Lots of people have recovered. Yes, some have recovered because the original diagnosis was a mistaken one and the chronic fatigue was found to be a symptom of something else, but most patients have been correctly diagnosed and chosen different paths to wellness.
My path has shown me so many things over the years. By finding my husband I had a new purpose and guided myself to remove the seizures from my life. When this was achieved I had a much clearer view of the ME and could decipher the symptoms. What options were there? we decided to clear my life from any complications and give me space. Then reading was done and lots of research about ME. So many options were out there but we realised that so many of these were about one part of the body: just relaxation, or just changing the diet. We knew my illness went a lot deeper than that, and I had tried a lot of these before. So we delved deeper.
From the different recovery stories we read it became clear that I needed to change my lifestyle completely and do many things at once, not just the one. Yoga and meditation appeared as something that had helped many people. I had never wanted to just do a yoga class for an hour once a week. As I investigated I knew I was right in that sense; I found that true yoga is a lifestyle. Encompassing the whole life. Mind, Body and Spirit. It is not a faith it is a belief in oneself.
Now it sounds like I'm preaching!
I found a form of NLP (Neuro Linguistic Programming), ME specialists with information ready to be tapped, free and paid for (thank you Internet!). I found information about how the ME body is working so differently to a well body. All the time believing and disbelieving, having good days and bad days, some times feeling more like floating, others sinking into the ground with heaviness. Look how far I have come. I can get dressed most days. I can sit at a table and type. I have dedicated myself to recovery and because I am believing it will happen and am much better for it, it is happening differently to every time I have found a better place before. The yoga has helped me so much, in mind, body and spirit, and I feel that the Qi healing that I have started will too. I may devote my life to them in the future and help people who are finding it difficult like I have been for the last twenty-five years. This is currently my path.
So many things can encompass mind, body and spirit- music, art, gardening, family life. Because by playing music you move your body, you fill your mind with sounds and tones, with understanding and visual learning, you fill your spirit with joy and encouragement.
Gardening can be about movement (and eating!), learning about the trees and flowers, the wildlife they attract and about finding beauty and sounds, enjoying the smells and the rhythm of life.
I encourage you to find something to devote to. Be aware of your illness and be aware of your body at all times. If you want to study your body then do, if you want to study food and find simple ways to make nourishing meals, then do, if you want to study the outside world, then do, if you want to study your family and surroundings then do.
Take time to read, practice, enjoy and find a purpose. If this purpose can continue into your life as you recover and find work, so supporting the rest of your life, then all the better. Just take your time, be aware of your body's needs as you recover and it will happen. Along your own path.
My path has shown me so many things over the years. By finding my husband I had a new purpose and guided myself to remove the seizures from my life. When this was achieved I had a much clearer view of the ME and could decipher the symptoms. What options were there? we decided to clear my life from any complications and give me space. Then reading was done and lots of research about ME. So many options were out there but we realised that so many of these were about one part of the body: just relaxation, or just changing the diet. We knew my illness went a lot deeper than that, and I had tried a lot of these before. So we delved deeper.
From the different recovery stories we read it became clear that I needed to change my lifestyle completely and do many things at once, not just the one. Yoga and meditation appeared as something that had helped many people. I had never wanted to just do a yoga class for an hour once a week. As I investigated I knew I was right in that sense; I found that true yoga is a lifestyle. Encompassing the whole life. Mind, Body and Spirit. It is not a faith it is a belief in oneself.
Now it sounds like I'm preaching!
I found a form of NLP (Neuro Linguistic Programming), ME specialists with information ready to be tapped, free and paid for (thank you Internet!). I found information about how the ME body is working so differently to a well body. All the time believing and disbelieving, having good days and bad days, some times feeling more like floating, others sinking into the ground with heaviness. Look how far I have come. I can get dressed most days. I can sit at a table and type. I have dedicated myself to recovery and because I am believing it will happen and am much better for it, it is happening differently to every time I have found a better place before. The yoga has helped me so much, in mind, body and spirit, and I feel that the Qi healing that I have started will too. I may devote my life to them in the future and help people who are finding it difficult like I have been for the last twenty-five years. This is currently my path.
So many things can encompass mind, body and spirit- music, art, gardening, family life. Because by playing music you move your body, you fill your mind with sounds and tones, with understanding and visual learning, you fill your spirit with joy and encouragement.
Gardening can be about movement (and eating!), learning about the trees and flowers, the wildlife they attract and about finding beauty and sounds, enjoying the smells and the rhythm of life.
I encourage you to find something to devote to. Be aware of your illness and be aware of your body at all times. If you want to study your body then do, if you want to study food and find simple ways to make nourishing meals, then do, if you want to study the outside world, then do, if you want to study your family and surroundings then do.
Take time to read, practice, enjoy and find a purpose. If this purpose can continue into your life as you recover and find work, so supporting the rest of your life, then all the better. Just take your time, be aware of your body's needs as you recover and it will happen. Along your own path.
Wednesday 25 July 2012
Oh, Boy!
Yes, oh, boy!
So I've not been writing much these last two days. It's because not a lot is happening. I'm more aware of me. My needs first and all that jazz! If I'm not well enough to do it, it doesn't happen.
Thankfully we had the cleaner round last night. I feel like bowing prostrations to her sometimes! As I was extra tired last week I had no energy to even put things away after I'd used them and some of the bags from holiday are still hanging around waiting for me to devote half an hour to them.
I have been managing a bit of forum chat with the yoga group. Good to know they're out there for me. I've been doing a couple of classes of Qi training. The understanding of Qi is a fascinating world. It is not a faith group but learning how to harness life energy. I certainly need a bit of life energy. So I'm giving it a try.
One book I have been picking up over the last month (it's only about 200 large print pages, so that shows you how long it can take me to read a book!) has helped me understand this more. It is about a Buddhist priest's pilgrimage to South Korea with her Master and senior Master. They climb cliff-edge mountains and wade through typhoons to visit innumerable higher-than-the-clouds monasteries and temples. She learns a lot along the way and realises that all she needs to do is let go and believe in herself. By the end, she "gets" it and her senior Master pronounces her a Master too. The Qi centre, teaches a lot of that too. We don't need to be stressed in life because the energy is there.
A lot of ME is about that. We have to let go and believe that we can recover so that we stop stressing about it so much. By decreasing the mind stress (which helps only to a certain extent!) the body stress can start to heal too. My word there is a lot of body to heal. I hate that my cells are damaged- damn that original virus!!! my muscles still ache if I do a little too strenuous yoga. I get headaches if I don't sleep well or my day has been too busy. I will be able to move on; patience is a big hurdle, it just takes time!
So I've not been writing much these last two days. It's because not a lot is happening. I'm more aware of me. My needs first and all that jazz! If I'm not well enough to do it, it doesn't happen.
Thankfully we had the cleaner round last night. I feel like bowing prostrations to her sometimes! As I was extra tired last week I had no energy to even put things away after I'd used them and some of the bags from holiday are still hanging around waiting for me to devote half an hour to them.
I have been managing a bit of forum chat with the yoga group. Good to know they're out there for me. I've been doing a couple of classes of Qi training. The understanding of Qi is a fascinating world. It is not a faith group but learning how to harness life energy. I certainly need a bit of life energy. So I'm giving it a try.
One book I have been picking up over the last month (it's only about 200 large print pages, so that shows you how long it can take me to read a book!) has helped me understand this more. It is about a Buddhist priest's pilgrimage to South Korea with her Master and senior Master. They climb cliff-edge mountains and wade through typhoons to visit innumerable higher-than-the-clouds monasteries and temples. She learns a lot along the way and realises that all she needs to do is let go and believe in herself. By the end, she "gets" it and her senior Master pronounces her a Master too. The Qi centre, teaches a lot of that too. We don't need to be stressed in life because the energy is there.
A lot of ME is about that. We have to let go and believe that we can recover so that we stop stressing about it so much. By decreasing the mind stress (which helps only to a certain extent!) the body stress can start to heal too. My word there is a lot of body to heal. I hate that my cells are damaged- damn that original virus!!! my muscles still ache if I do a little too strenuous yoga. I get headaches if I don't sleep well or my day has been too busy. I will be able to move on; patience is a big hurdle, it just takes time!
Tuesday 24 July 2012
Monday 23 July 2012
We are all diamonds
Break off the layers of stone and dirt which surround you,
And find your true self inside.
You will glow, shine and find your beauty within.
Always it has been there,
Seize the opportunity to let it be seen.
And find your true self inside.
You will glow, shine and find your beauty within.
Always it has been there,
Seize the opportunity to let it be seen.
Sunday 22 July 2012
Monthly Achievements July
I am doing an hour Yoga class regularly before breakfast. This does appear beyond my reach and until I realised what yoga was all about I would have thought it would be. Yoga class involves, not pushing to the limit, not working up a sweat, but gentle poses which suit my mood and stretchiness every morning. The classes are easy to find and if there are sections of the hour which are totally beyond me, I adjust or sit them out. I am seeing the benefits enormously. I can stretch and bend unbelievably compared to six months ago. my upper body strength has improved- I can't carry the shopping yet, but can fill the washing machine and make the bed in stages, without consequential pain. (I wrote this ten days ago, thinking I needed a monthly achievements post and now am only managing 30minutes at most every day, but I fit in stretches and poses when I am resting throughout the day. So I may not be doing an hours class or doing as many weight baring poses, but am still stretching and encouraging movement)
I can cook a little more, standing at hob or the mixer. I don't feel dizzy or lightheaded and my legs don't ache so quickly, so 10-15 minutes is OK. The tools I put in place are still invaluable to me, so I don't have use my energy everyday to do this. Everything is frozen in batches and somedays I can cook myself breakfast and an interesting sour of the moment lunch or tea, somedays I have to rely on the microwave and husband! I'm still not chopping vegetables- I tried a few weeks ago, but it hurts my wrists pushing the knife down on the chopping board. I do it occasionally rather dangerously holding the knife and item in mid-air as if I was peeling an apple, but it doesn't achieve particularly good results!
Been on holiday!!! and stayed longer than expected. We stayed at my sister's when they were away, so had the place to ourselves. I had to deal with stairs, which were less of a challenge than I thought they might be. We were anticipating having to come home after just a few days if I found it difficult but we were there for 8 nights and very sad to leave. Thanks sis!
Walking a little, either pushing the wheelchair or without. I mentioned this in May, but it has been and gone since then week on week and I now feel more confident when I do it. Again this is probably due to the yoga poses I now practice daily which strengthen my legs and encourage a taller spine; mountain pose can be done just waiting for the microwave to cook my lunch and one of my friends was impressed to see me emptying the washing machine- I was in chair pose! Walking takes a lot of energy and I must follow my daily pacing, so if I am doing more indoors I will not walk outside. To quote Yoda "It will be so" ! (actually I'm not sure that is something Yoda said, but it seems like it is)
I can cook a little more, standing at hob or the mixer. I don't feel dizzy or lightheaded and my legs don't ache so quickly, so 10-15 minutes is OK. The tools I put in place are still invaluable to me, so I don't have use my energy everyday to do this. Everything is frozen in batches and somedays I can cook myself breakfast and an interesting sour of the moment lunch or tea, somedays I have to rely on the microwave and husband! I'm still not chopping vegetables- I tried a few weeks ago, but it hurts my wrists pushing the knife down on the chopping board. I do it occasionally rather dangerously holding the knife and item in mid-air as if I was peeling an apple, but it doesn't achieve particularly good results!
Been on holiday!!! and stayed longer than expected. We stayed at my sister's when they were away, so had the place to ourselves. I had to deal with stairs, which were less of a challenge than I thought they might be. We were anticipating having to come home after just a few days if I found it difficult but we were there for 8 nights and very sad to leave. Thanks sis!
Walking a little, either pushing the wheelchair or without. I mentioned this in May, but it has been and gone since then week on week and I now feel more confident when I do it. Again this is probably due to the yoga poses I now practice daily which strengthen my legs and encourage a taller spine; mountain pose can be done just waiting for the microwave to cook my lunch and one of my friends was impressed to see me emptying the washing machine- I was in chair pose! Walking takes a lot of energy and I must follow my daily pacing, so if I am doing more indoors I will not walk outside. To quote Yoda "It will be so" ! (actually I'm not sure that is something Yoda said, but it seems like it is)
Saturday 21 July 2012
Energy Reserves
(a friend of mine, who also has ME and is following a similar path as I am to recovery, has asked me to write more about pacing and how important the breath is during exercise of any kind)...
What energy reserves?
We just don't have them. The initial crash and subsequent time of rest and recuperation needed has taken a lot from us. The dysfunction of the autonomic nervous system results in a reduced ability to utilise the nutrients that we may eat and take in from the world around us. Leaving not just de-conditioned muscles but damaged cells and muscular tissue. The bone in a broken leg will heal in about 6 weeks, but so much of the muscle will need rebuilding over time, breaking in and creating new muscle cells to improve fitness. The unlikely thing about a broken leg is the loss of much fitness throughout the rest of the body. A little energy might be lost in the lungs and heart, but this is unlikely to be a dramatic loss. You can still pump iron with a broken leg, your torso can still lift weights, type, chop vegetables.
In ME patients energy is used every day, of course, we are still breathing and our hearts are still beating, cells are regenerating. The difference is that our bodies are damaged and have lost reserves, the cells are using energy from every breath we take. Oxygen comes into our bodies and is used straight away. The lungs must be healthy enough to take in what we need, the heart has to be strong enough to pump the oxygen around the body and the blood has to be healthy enough to provide the muscles with sufficient oxygen. The body doesn't have many untapped resources which will give us a little extra if we want to try a little more out of the blue, or three days in a row. (one day a short walk may be fine, but the reserves might have been used and will need to restock!)
The bodies of a long distance runner have been exercised and trained so well that they can utilise the oxygen that they are breathing for much longer, they also have vast quantities of energy reserves which are utilised during exertion and refuelled in between and during races. (the energy drinks that are now especially tailored for their needs). When they hit the wall, it isn't like us within seconds or minutes, it is after running for hours.
As ME patients our lungs need rehabilitation and retraining to take in oxygen efficiently, they can only give you so much! Even by breathing calmly and enjoying what you do, with a gentle, willing, happy state of mind, the reserves, lung capacity and even heart muscle isn't there to support what you may want to do.
Reserves have to be built up, rest is needed to encourage healing in the cells after exercise of all kinds; lifting clothes into the washing machine, a short walk over the road to feed the cat when the neighbours are on holiday.
Oxygen is providing our energy, giving the body the energy it needs and letting the reserves build up slowly and gently. As the muscles build and cells are healed with this energy, aerobic breath can move onto anaerobic breath- breath which is not giving enough oxygen to complete the task.
While you are still recovering you will notice that anaerobic breath has been used, maybe through as simple a task as a short brisk walk in cool fresh morning air. Walk more slowly and give your breath enough chance to energise the body, but also environment can be so key; cool air will exhaust the body quicker as the energy is used heating the lungs and won't get much further! Air from a higher altitude, will have less oxygen anyway. For all these reasons the chest can ache, but also nausea, headaches and lightheadedness may result, with muscle pain afterwards indicating that reserves were being tapped, which just weren't there! Rest will help this and everyone will be learning their limits week by week.
As time passes and tasks become easier, energy reserves will build and the need for aerobic breath can be discarded sometimes.
I'm learning to give myself a break, the research in this field is fascinating- not just for ME sufferers but those who are in rehabilitation of all kinds- and it has helped me understand my body much better.
Give yourself a break too, take things slowly, exercise with gentle movements and with lots of rest breaks; find the optimum environment for stretching the body- not too hot, not too cold. Don't go mad and stress the breath with anxiety so the lungs don't have a chance! Just take it easy and be aware. Make your carers aware of this, different days bring different energy amounts, the smallest thing can result in needing more or less help as the days go by- be aware of this too, your body is recovering and it needs love, comfort and a gentle guiding hand.
What energy reserves?
We just don't have them. The initial crash and subsequent time of rest and recuperation needed has taken a lot from us. The dysfunction of the autonomic nervous system results in a reduced ability to utilise the nutrients that we may eat and take in from the world around us. Leaving not just de-conditioned muscles but damaged cells and muscular tissue. The bone in a broken leg will heal in about 6 weeks, but so much of the muscle will need rebuilding over time, breaking in and creating new muscle cells to improve fitness. The unlikely thing about a broken leg is the loss of much fitness throughout the rest of the body. A little energy might be lost in the lungs and heart, but this is unlikely to be a dramatic loss. You can still pump iron with a broken leg, your torso can still lift weights, type, chop vegetables.
In ME patients energy is used every day, of course, we are still breathing and our hearts are still beating, cells are regenerating. The difference is that our bodies are damaged and have lost reserves, the cells are using energy from every breath we take. Oxygen comes into our bodies and is used straight away. The lungs must be healthy enough to take in what we need, the heart has to be strong enough to pump the oxygen around the body and the blood has to be healthy enough to provide the muscles with sufficient oxygen. The body doesn't have many untapped resources which will give us a little extra if we want to try a little more out of the blue, or three days in a row. (one day a short walk may be fine, but the reserves might have been used and will need to restock!)
The bodies of a long distance runner have been exercised and trained so well that they can utilise the oxygen that they are breathing for much longer, they also have vast quantities of energy reserves which are utilised during exertion and refuelled in between and during races. (the energy drinks that are now especially tailored for their needs). When they hit the wall, it isn't like us within seconds or minutes, it is after running for hours.
As ME patients our lungs need rehabilitation and retraining to take in oxygen efficiently, they can only give you so much! Even by breathing calmly and enjoying what you do, with a gentle, willing, happy state of mind, the reserves, lung capacity and even heart muscle isn't there to support what you may want to do.
Reserves have to be built up, rest is needed to encourage healing in the cells after exercise of all kinds; lifting clothes into the washing machine, a short walk over the road to feed the cat when the neighbours are on holiday.
Oxygen is providing our energy, giving the body the energy it needs and letting the reserves build up slowly and gently. As the muscles build and cells are healed with this energy, aerobic breath can move onto anaerobic breath- breath which is not giving enough oxygen to complete the task.
While you are still recovering you will notice that anaerobic breath has been used, maybe through as simple a task as a short brisk walk in cool fresh morning air. Walk more slowly and give your breath enough chance to energise the body, but also environment can be so key; cool air will exhaust the body quicker as the energy is used heating the lungs and won't get much further! Air from a higher altitude, will have less oxygen anyway. For all these reasons the chest can ache, but also nausea, headaches and lightheadedness may result, with muscle pain afterwards indicating that reserves were being tapped, which just weren't there! Rest will help this and everyone will be learning their limits week by week.
As time passes and tasks become easier, energy reserves will build and the need for aerobic breath can be discarded sometimes.
I'm learning to give myself a break, the research in this field is fascinating- not just for ME sufferers but those who are in rehabilitation of all kinds- and it has helped me understand my body much better.
Give yourself a break too, take things slowly, exercise with gentle movements and with lots of rest breaks; find the optimum environment for stretching the body- not too hot, not too cold. Don't go mad and stress the breath with anxiety so the lungs don't have a chance! Just take it easy and be aware. Make your carers aware of this, different days bring different energy amounts, the smallest thing can result in needing more or less help as the days go by- be aware of this too, your body is recovering and it needs love, comfort and a gentle guiding hand.
Friday 20 July 2012
The Tilt Test
This sounds intriguing. And it is. One of the first innovations into ME research that I learned about when I crashed again two years ago. Much research and discovery had happened since my last crash. Even just ten years previously when I had crashed seriously before we could find no help which would give an ounce of positivity towards recovery. A bad time I had experienced between 2006 and 2008 appeared to be so focused on moving house, coping with changes in the family situation that we put it all down to stress and poor control of the Epilepsy- in hindsight it was so definitely part of the ME spiral I feel a fool to have not searched for related support then.
So the Tilt Test is something that has been established at Newcastle University. The idea is to monitor severely affected ME patients- those who are bed bound, possibly with support through intravenous drip and stomach feeding tubes. These patients will be put on a bed, which is tilted daily. Only by increasing the time and angle of the tilt over weeks and months will the body slowly be able to sit upright and eventually stand. The dysfunction of the autonomic nervous system- a physical dysfunction- causes such problems that the essence of this test, slow and monitored pacing, is essential. For patients who have been in these situations for years at a time and whose family are round-the-clock carers this is a revelation. Nutrient intake is carefully monitored as is body temperature and blood pressure and every other possible monitoring test you can imagine. As soon as the body shows signs of stress, the tilt is reversed and clues are noted so the next daily tilt can be finished before stress arises.
How did this help me? At this time I was dizzy from standing and needed head and neck support while sitting. I recognised the tilt concept in myself. If I walked anywhere I would hold onto someone's arm, or use furniture, door frames and walls around the house as an extra support (using a walking stick or frame put pressure on my arms and wrists which just did not have the strength to keep me upright)
By discovering this and realising that the researchers around the world were discovering more and more about the physical reasons behind the illness I found hope and began to believe in recovery. I also found reasons for my illness and began to understand the symptoms which had just happened and confused me for so long. I didn't feel so often that I was flailing in the dark and grabbing at anything that came within reach.
I began to stand up by the bed everyday. I tried to walk through the house without holding onto things- this didn't work, I had too much belief! So I was starting to stand, but that was about it. What I was encouraged to do was investigate further. I found ME Research and discovered how much they had contributed to the world of modern ME treatment. I also found books to read (some of which were still down in the doldrums and insisted I would be ill forever!) and discovered the Optimum Health Clinic and learnt a lot from their FreedomfromME YouTube videos. Freedom from ME is a possibility and I encourage anyone who is connected in any way with this illness to start searching. It took me 18 months from finding Professor Newton in Newcastle University (as energy levels and brain fog dictated my research!) but I found more and more, better and better solutions. The sooner the research starts, the sooner some kind of relief will be felt.
So the Tilt Test is something that has been established at Newcastle University. The idea is to monitor severely affected ME patients- those who are bed bound, possibly with support through intravenous drip and stomach feeding tubes. These patients will be put on a bed, which is tilted daily. Only by increasing the time and angle of the tilt over weeks and months will the body slowly be able to sit upright and eventually stand. The dysfunction of the autonomic nervous system- a physical dysfunction- causes such problems that the essence of this test, slow and monitored pacing, is essential. For patients who have been in these situations for years at a time and whose family are round-the-clock carers this is a revelation. Nutrient intake is carefully monitored as is body temperature and blood pressure and every other possible monitoring test you can imagine. As soon as the body shows signs of stress, the tilt is reversed and clues are noted so the next daily tilt can be finished before stress arises.
How did this help me? At this time I was dizzy from standing and needed head and neck support while sitting. I recognised the tilt concept in myself. If I walked anywhere I would hold onto someone's arm, or use furniture, door frames and walls around the house as an extra support (using a walking stick or frame put pressure on my arms and wrists which just did not have the strength to keep me upright)
By discovering this and realising that the researchers around the world were discovering more and more about the physical reasons behind the illness I found hope and began to believe in recovery. I also found reasons for my illness and began to understand the symptoms which had just happened and confused me for so long. I didn't feel so often that I was flailing in the dark and grabbing at anything that came within reach.
I began to stand up by the bed everyday. I tried to walk through the house without holding onto things- this didn't work, I had too much belief! So I was starting to stand, but that was about it. What I was encouraged to do was investigate further. I found ME Research and discovered how much they had contributed to the world of modern ME treatment. I also found books to read (some of which were still down in the doldrums and insisted I would be ill forever!) and discovered the Optimum Health Clinic and learnt a lot from their FreedomfromME YouTube videos. Freedom from ME is a possibility and I encourage anyone who is connected in any way with this illness to start searching. It took me 18 months from finding Professor Newton in Newcastle University (as energy levels and brain fog dictated my research!) but I found more and more, better and better solutions. The sooner the research starts, the sooner some kind of relief will be felt.
Thursday 19 July 2012
I'm Having a Bad Day
Last week I had a chance encounter which led to a free Qi massage (Korean tradition of harnessing energy, pronounced 'key')
I have since had two more treatments and am planning to continue.
The BAD day is a result of this- so much negative energy is being removed from my body that I am experiencing a major detox. Tears are rolling from my eyes and I'm not sure why- I'm not really sad or upset about anything- I just feel totally helpless. I can't force myself to have a better day, it almost feels like I'm going backwards. But inside I have a different, floating, calm acceptance of this exhausting despair.
The Qi master tells me that my detox is a good thing and that by seeing it happen so soon after the first treatments is an even better thing. My body is in the right place to accept the energy release and I just have to let it happen.
I was crying for about two hours this morning and ended up ringing a friend to come and make me breakfast. I had so little energy, all I had eaten was a banana.
My lunch, three hours later has consisted of a microwaved mug of tomato soup and anti-oxidant rich brazil nuts and dark chocolate (I tell myself that every time I eat dark chocolate and nuts; they're good for me and fill me up quickly) so a non-judgemental quick lunch will keep me going until OH makes me tea later...
I have since had two more treatments and am planning to continue.
The BAD day is a result of this- so much negative energy is being removed from my body that I am experiencing a major detox. Tears are rolling from my eyes and I'm not sure why- I'm not really sad or upset about anything- I just feel totally helpless. I can't force myself to have a better day, it almost feels like I'm going backwards. But inside I have a different, floating, calm acceptance of this exhausting despair.
The Qi master tells me that my detox is a good thing and that by seeing it happen so soon after the first treatments is an even better thing. My body is in the right place to accept the energy release and I just have to let it happen.
I was crying for about two hours this morning and ended up ringing a friend to come and make me breakfast. I had so little energy, all I had eaten was a banana.
My lunch, three hours later has consisted of a microwaved mug of tomato soup and anti-oxidant rich brazil nuts and dark chocolate (I tell myself that every time I eat dark chocolate and nuts; they're good for me and fill me up quickly) so a non-judgemental quick lunch will keep me going until OH makes me tea later...
Wednesday 18 July 2012
Dream Number One
Every week I am going to tell you a dream I have for the future. Be it near or far only time will tell, if I reach them, only time will tell. They may change with time, but for now, they are what I am clinging to, to drive me towards health and happiness.
My husband and I are living independently. The only benefit I receive from the state is a free prescription for my Epilepsy medication. Life is not about searching for the next commitment and saving for next month's rainy day which always comes three weeks earlier than expected!
I am working. Nothing fancy. I do not want to find a major career. I am 37 and do not intend to spend the first years after I find health stretching myself to the limit and pushing myself under. The intention is to not start my own business as I have done in the past, unless I find someone who will be willing to take the time and effort burden from me. I want to work nine to five and come home, away from the 'office'.
An ideal place to start is working in a charity shop, as a volunteer, with the assistance of the benefit system's back-to-work scheme. By getting this experience, I could then start in a small chain retail outlet, where, maybe over time, I might move through the organisation taking on more shifts and progressing to supervisor or assistant manager.
When I was about thirteen years old The Clothes Show appeared on BBC One, at tea time on Sunday evenings. Selina Scott and Jeff Banks would tell us all about the fashion industry from the inspirations, to the shop floor and then of course, how to recreate the cat walk finery with a tighter budget. This was repeated in the monthly magazine, which I bought and eventually had as a Christmas present subscription every year. It gave more inspiration, more encouragement and most importantly it showed me where my path was going. From being a young child I had been very particular about my clothes, I knew my style and no one was going to tell me any different. From the age of nine and ten I might try on nine or ten outfits (I'm not exaggerating!) from my wardrobe before breakfast at the weekend, before finding the right one to suit my mood (and then change during the day too if my mood changed!) Clothes were my expression of me. Mum didn't realise how she encouraged this by finding some of our clothes in jumble sales. This included one week, finding us black sacks full of handmade clothes from an unknown donator. I was hooked, Jeff Banks only cemented the idea in my head.
So unlike my teenage dream of being a milliner or knitwear designer (I have been designing knitwear for the last few years, it just takes a lot of funds, a lot of time and effort to sell it-even online- and unless I eventually sold a few designs to major designers or knitting pattern publishers on a regular basis, it would not support us) I intend to sell fashion in a store, run by someone else and help customers find the right clothes for them.
I have dreams outside of work which would fulfil my other passions and I will tell you about them another time.
My husband and I are living independently. The only benefit I receive from the state is a free prescription for my Epilepsy medication. Life is not about searching for the next commitment and saving for next month's rainy day which always comes three weeks earlier than expected!
I am working. Nothing fancy. I do not want to find a major career. I am 37 and do not intend to spend the first years after I find health stretching myself to the limit and pushing myself under. The intention is to not start my own business as I have done in the past, unless I find someone who will be willing to take the time and effort burden from me. I want to work nine to five and come home, away from the 'office'.
An ideal place to start is working in a charity shop, as a volunteer, with the assistance of the benefit system's back-to-work scheme. By getting this experience, I could then start in a small chain retail outlet, where, maybe over time, I might move through the organisation taking on more shifts and progressing to supervisor or assistant manager.
When I was about thirteen years old The Clothes Show appeared on BBC One, at tea time on Sunday evenings. Selina Scott and Jeff Banks would tell us all about the fashion industry from the inspirations, to the shop floor and then of course, how to recreate the cat walk finery with a tighter budget. This was repeated in the monthly magazine, which I bought and eventually had as a Christmas present subscription every year. It gave more inspiration, more encouragement and most importantly it showed me where my path was going. From being a young child I had been very particular about my clothes, I knew my style and no one was going to tell me any different. From the age of nine and ten I might try on nine or ten outfits (I'm not exaggerating!) from my wardrobe before breakfast at the weekend, before finding the right one to suit my mood (and then change during the day too if my mood changed!) Clothes were my expression of me. Mum didn't realise how she encouraged this by finding some of our clothes in jumble sales. This included one week, finding us black sacks full of handmade clothes from an unknown donator. I was hooked, Jeff Banks only cemented the idea in my head.
So unlike my teenage dream of being a milliner or knitwear designer (I have been designing knitwear for the last few years, it just takes a lot of funds, a lot of time and effort to sell it-even online- and unless I eventually sold a few designs to major designers or knitting pattern publishers on a regular basis, it would not support us) I intend to sell fashion in a store, run by someone else and help customers find the right clothes for them.
I have dreams outside of work which would fulfil my other passions and I will tell you about them another time.
Tuesday 17 July 2012
All in my Head!?
this is a controversial one!!!
There has been much debate over the years about how to define ME and CFS and every other illness seen in the world without specific easily diagnosed symptoms and definitive recognised similarities between patients.
Anyone who says that ME is all in the mind is mistaken, there are real physical symptoms. Just deciding one day to get out of bed and find a part-time job, to encourage a better awareness and greater strength is NOT going to heal. Choosing to start jogging or start a small business working nine to five from home, is NOT going to heal.
ME has exhaustion, mind, body and the soul too. Cognitive exhaustion, physical exhaustion and spiritual exhaustion.
Finding a new place of strength and reaching for recovery starts with acceptance, pragmatic awareness of your situation and starting to cope with the everyday trials of not having as much energy as those around you. Battling with friends and family who don't understand this is mindfully and spiritually debilitating. So where does this strength come from if the battle continues?
I found it by finding my own personal space and respecting it; by learning about me with as little negative outside energy as possible. Choosing the positivity inside of me and rejecting the negative energy was the first step.
I found the positivity in books, in websites, in specialists and mentors, in carefully chosen friends and family who did understand, who were supportive and who didn't invade my soul with negativity every time they invaded our personal space.
By finding a spiritual and mindful place which encouraged healing I found the right place for physical healing to begin.
Physiologically all ME patients have so many symptoms, all of which can be given names- from Generalised Anxiety Disorder, to Psoriasis; from Pelvic Misalignment, to Repetitive Strain Injury. All of these are symptoms of ME. If I went through my body and found every niggle and gave it a name, I would have a list twice as long as my arm. I refuse to go there. It just causes more anxiety- treatments can cause secondary symptoms and more diagnoses, only causing a cycle of dire proportions, and most definitely encouraging a Generalised Anxiety!
My one symptom which has had a diagnosis, and needed treatment was the seizures- diagnosed as Epilepsy(is this a separate thing, or part of the ME? all I do know is that it is part of me, so they must be connected somehow). I take medication for this. I don't like it, but I take it every day, twice daily and do not miss. Maybe one day we will realise that it was a symptom of the ME, maybe just a foible in my body, caused by a physical injury which will last a lifetime. My GP will tell you that I have more symptoms, he has a whole list of them! I just don't take note of them, am aware of niggles, but by paying them less attention and giving my body general respect and awareness I find a more calm and relaxed attitude, mindfully and physically.
With this calmer, more peaceful mind my body can find a physiological release and physical wellness and whole healing. ME is in the mind and body, every illness is in the mind and body, we are mind and body and we are whole, the two cannot be separated.
There has been much debate over the years about how to define ME and CFS and every other illness seen in the world without specific easily diagnosed symptoms and definitive recognised similarities between patients.
Anyone who says that ME is all in the mind is mistaken, there are real physical symptoms. Just deciding one day to get out of bed and find a part-time job, to encourage a better awareness and greater strength is NOT going to heal. Choosing to start jogging or start a small business working nine to five from home, is NOT going to heal.
ME has exhaustion, mind, body and the soul too. Cognitive exhaustion, physical exhaustion and spiritual exhaustion.
Finding a new place of strength and reaching for recovery starts with acceptance, pragmatic awareness of your situation and starting to cope with the everyday trials of not having as much energy as those around you. Battling with friends and family who don't understand this is mindfully and spiritually debilitating. So where does this strength come from if the battle continues?
I found it by finding my own personal space and respecting it; by learning about me with as little negative outside energy as possible. Choosing the positivity inside of me and rejecting the negative energy was the first step.
I found the positivity in books, in websites, in specialists and mentors, in carefully chosen friends and family who did understand, who were supportive and who didn't invade my soul with negativity every time they invaded our personal space.
By finding a spiritual and mindful place which encouraged healing I found the right place for physical healing to begin.
Physiologically all ME patients have so many symptoms, all of which can be given names- from Generalised Anxiety Disorder, to Psoriasis; from Pelvic Misalignment, to Repetitive Strain Injury. All of these are symptoms of ME. If I went through my body and found every niggle and gave it a name, I would have a list twice as long as my arm. I refuse to go there. It just causes more anxiety- treatments can cause secondary symptoms and more diagnoses, only causing a cycle of dire proportions, and most definitely encouraging a Generalised Anxiety!
My one symptom which has had a diagnosis, and needed treatment was the seizures- diagnosed as Epilepsy(is this a separate thing, or part of the ME? all I do know is that it is part of me, so they must be connected somehow). I take medication for this. I don't like it, but I take it every day, twice daily and do not miss. Maybe one day we will realise that it was a symptom of the ME, maybe just a foible in my body, caused by a physical injury which will last a lifetime. My GP will tell you that I have more symptoms, he has a whole list of them! I just don't take note of them, am aware of niggles, but by paying them less attention and giving my body general respect and awareness I find a more calm and relaxed attitude, mindfully and physically.
With this calmer, more peaceful mind my body can find a physiological release and physical wellness and whole healing. ME is in the mind and body, every illness is in the mind and body, we are mind and body and we are whole, the two cannot be separated.
Monday 16 July 2012
Listening To ME Again
I told you on Saturday about finding clues, cues and listening to me. What I intended to tell you and what, thanks to my cognitive depletion! I did not tell you, was about my breath. My breath has become my foothold, my core being, my ground-control!
Thanks to Yoga, and my daily meditations, I can check in with my breath throughout the day and learn so much from it. My breath is longer, smaller, (who needs a lot of air, when they're sitting in a chair or walking around the house slowly!) and it gives me constant clues.
Connecting with my breath during an unusual task, one which I may not have attempted for months or years is a brilliant way to discover whether I should be continuing with the task, or leaving it for a few weeks before trying again.
Also when I am having a day which feels that little more taxing, I connect with my breath more regularly to help me decide whether an everyday mundane task should be left for someone else or for another day.
I discover the shorter, sharper breaths in the top of the chest appearing when I am pushing too far, which indicates stress in the body finding compensation in hyperventilation. I can stop it, if I know it is there, and find a cooler calmer breath.
Holding the breath is another natural state, to encourage greater strength for shorter periods of time- but it doesn't work, just strains the whole torso, and if continued can cause headache and chest pain, nausea and dizziness. This sort of breath gives less oxygen and then needs extra long breaths to compensate- what is the point in that!
In a healthy person the breath is important, but an occasional change in breath wouldn't be that important. Playing sports is an ideal example of changing the breath, whereas Usain Bolt might run 100 metres and be in a calm, laid back frame of mind with a pretty cool regular breath, he is the exception. The human body was made for the flight and fight responses. The uncanny thing about ME is that these breaths become the norm. Fight and Flight is constant, the body might not respond but the autonomic nervous system, the unconscious responses throughout the body, do. By taking control of my breath I am telling those responses to calm down, to find another host for exhaustion and over-exertion. Aerobic and anaerobic breath can be the difference between post- exertion malaise and a gentle flow to the days and weeks, leading to a slow gentle flow to recovery. I've learnt to take control of my breath, to tell the whole of my system to realise I'm not getting involved.
By simply realising when my breath becomes out of control and either calm it while I am doing an activity or realise the activity is better left for another day I'm doing myself a big favour.
Thanks to Yoga, and my daily meditations, I can check in with my breath throughout the day and learn so much from it. My breath is longer, smaller, (who needs a lot of air, when they're sitting in a chair or walking around the house slowly!) and it gives me constant clues.
Connecting with my breath during an unusual task, one which I may not have attempted for months or years is a brilliant way to discover whether I should be continuing with the task, or leaving it for a few weeks before trying again.
Also when I am having a day which feels that little more taxing, I connect with my breath more regularly to help me decide whether an everyday mundane task should be left for someone else or for another day.
I discover the shorter, sharper breaths in the top of the chest appearing when I am pushing too far, which indicates stress in the body finding compensation in hyperventilation. I can stop it, if I know it is there, and find a cooler calmer breath.
Holding the breath is another natural state, to encourage greater strength for shorter periods of time- but it doesn't work, just strains the whole torso, and if continued can cause headache and chest pain, nausea and dizziness. This sort of breath gives less oxygen and then needs extra long breaths to compensate- what is the point in that!
In a healthy person the breath is important, but an occasional change in breath wouldn't be that important. Playing sports is an ideal example of changing the breath, whereas Usain Bolt might run 100 metres and be in a calm, laid back frame of mind with a pretty cool regular breath, he is the exception. The human body was made for the flight and fight responses. The uncanny thing about ME is that these breaths become the norm. Fight and Flight is constant, the body might not respond but the autonomic nervous system, the unconscious responses throughout the body, do. By taking control of my breath I am telling those responses to calm down, to find another host for exhaustion and over-exertion. Aerobic and anaerobic breath can be the difference between post- exertion malaise and a gentle flow to the days and weeks, leading to a slow gentle flow to recovery. I've learnt to take control of my breath, to tell the whole of my system to realise I'm not getting involved.
By simply realising when my breath becomes out of control and either calm it while I am doing an activity or realise the activity is better left for another day I'm doing myself a big favour.
Sunday 15 July 2012
Stopping Myself In My Tracks
I have done this before. Started walking again when I realise how much I prefer walking to sitting in a wheelchair. Nice idea. Unfortunately with ME patients it doesn't always work like that!
So what has happened before? Over a summer, when the weather has been good I have been out of the house. Maybe starting in April, thinking I would try to start getting a bit more exercise, enjoy the free spirit. By August I am getting on a bus and having a whale of a time. But I am not listening!(see yesterday's post) My body was saying in June, "give me a chance, I know you're anxious to walk again, get some independence, but I'm not ready yet" I might have muscle aches, hip pains, a couple of 'crash' days dotted in and out of the weeks and my life would start to become a full blown wave of booms and busts, with seizures and days in bed, by the end of the summer. By September I'm cursing myself deciding what it could have been that caused all this. With so many symptoms being thrown at me, I am confused to say the least, especially with the last two months of probably hotter weather making it difficult anyway (over 23-24C is too much for me!).
Over the years I have tried more and more strategies to combat this. Just walking three days a week. Not using the bus and staying in the local area, only walking on flat ground. Last year I tried walking 100 yards then resting for a few minutes, taking me 20 minutes or more to go somewhere which would previously take me 6. I found so many walls to lean on and seats and benches around the town, I could lead a guided bus tour of them!
My legs are getting stronger, I don't get dizzy as often when I'm upright. I can stand in the kitchen for longer and have pushed the wheelchair a bit this week when we have been into town, here on holiday. Hindsight and knowledge is giving me a new perspective. If walking, like I have done this week, feels good and I do it every day it will probably lead to another downfall. However, if I walk for 5 minutes every day, or 5 days a week, I may manage quite well. The occasional slightly longer walk or standing will not make a big difference, but as with the meditation and yoga, it is the accumulation of it that makes the impact.
Walking is something I love. It was something I experienced a lot with my parents when I was a child. Going on holiday was about walking, not visiting theme-parks or spending all day by the pool. All it cost was a pair of wellies for everyone, wet-weather coats and a bar of Dutch chocolate for half-time! (my Dad would pick them up when he went over for work!) It is one thing I long for in my future and probably explains why, as soon as I feel the road under my feet, I just want to go, go, go all over again. I'm feeling that again now. It is so hard to restrain myself, but to find the end goal, and I do believe that is a plausible goal now, I have to take it one step at a time.
So what has happened before? Over a summer, when the weather has been good I have been out of the house. Maybe starting in April, thinking I would try to start getting a bit more exercise, enjoy the free spirit. By August I am getting on a bus and having a whale of a time. But I am not listening!(see yesterday's post) My body was saying in June, "give me a chance, I know you're anxious to walk again, get some independence, but I'm not ready yet" I might have muscle aches, hip pains, a couple of 'crash' days dotted in and out of the weeks and my life would start to become a full blown wave of booms and busts, with seizures and days in bed, by the end of the summer. By September I'm cursing myself deciding what it could have been that caused all this. With so many symptoms being thrown at me, I am confused to say the least, especially with the last two months of probably hotter weather making it difficult anyway (over 23-24C is too much for me!).
Over the years I have tried more and more strategies to combat this. Just walking three days a week. Not using the bus and staying in the local area, only walking on flat ground. Last year I tried walking 100 yards then resting for a few minutes, taking me 20 minutes or more to go somewhere which would previously take me 6. I found so many walls to lean on and seats and benches around the town, I could lead a guided bus tour of them!
My legs are getting stronger, I don't get dizzy as often when I'm upright. I can stand in the kitchen for longer and have pushed the wheelchair a bit this week when we have been into town, here on holiday. Hindsight and knowledge is giving me a new perspective. If walking, like I have done this week, feels good and I do it every day it will probably lead to another downfall. However, if I walk for 5 minutes every day, or 5 days a week, I may manage quite well. The occasional slightly longer walk or standing will not make a big difference, but as with the meditation and yoga, it is the accumulation of it that makes the impact.
Walking is something I love. It was something I experienced a lot with my parents when I was a child. Going on holiday was about walking, not visiting theme-parks or spending all day by the pool. All it cost was a pair of wellies for everyone, wet-weather coats and a bar of Dutch chocolate for half-time! (my Dad would pick them up when he went over for work!) It is one thing I long for in my future and probably explains why, as soon as I feel the road under my feet, I just want to go, go, go all over again. I'm feeling that again now. It is so hard to restrain myself, but to find the end goal, and I do believe that is a plausible goal now, I have to take it one step at a time.
Saturday 14 July 2012
Listening To Me
I hear this over and over from yoga teachers and ME specialists. Listen to what your body is telling you and take the right cues.It is so important. It has always been important to me, with my epilepsy and needing to be aware of what's going on around me. However it is not what is happening outside the body, it is inside the body that is important.
Listening, or being aware of my body has become the intrinsic pattern I need to keep and improve every day of my life. I'm sure everyone has lifted some shopping into the car and felt a twinge, only to continue with the day and feel even more of a twinge when finally it is time to cook the evening meal and the idea of standing in the kitchen for an hour is just not something that the back wants to do.
The core of my body, the biggest clue, can be found in my breath. One of the yoga online teachers I use puts breath awareness posts on her Facebook page, for example:
Yoga Empowered (link)
"Check in Break: How does your body feel right now? How about your mind? Does your breath reflect that? Without judgement - begin to smooth & even your breath. Do this at least 2 more times today. ^o^
I now check in with my breath regularly during the day and as a consequence my breath is slower and longer.
If I was constantly scanning my body and getting paranoid about every itch and twinge I would be doing the wrong thing, just causing more anxiety and filling my lungs with short sharp panic stricken breaths. Instead I am aware of how tired I might be, but I don't just say "oh, I'm tired, I'd better just carry on with what I'm doing and still be tired" I actually make choices throughout my day which reflect what I find. I decide whether changing activity might stop the tiredness, whether doing a bit of yoga stretching might stop my back aching, whether a lie on the the bed with an audiobook might be enough of a rest, or whether a meditation or sleep might be even better. By learning what my body is saying I am treating it better and making choices that are right for me, not right for anyone else. I'm listening to me and I'm coming first.
Listening, or being aware of my body has become the intrinsic pattern I need to keep and improve every day of my life. I'm sure everyone has lifted some shopping into the car and felt a twinge, only to continue with the day and feel even more of a twinge when finally it is time to cook the evening meal and the idea of standing in the kitchen for an hour is just not something that the back wants to do.
The core of my body, the biggest clue, can be found in my breath. One of the yoga online teachers I use puts breath awareness posts on her Facebook page, for example:
Yoga Empowered (link)
"Check in Break: How does your body feel right now? How about your mind? Does your breath reflect that? Without judgement - begin to smooth & even your breath. Do this at least 2 more times today. ^o^
I now check in with my breath regularly during the day and as a consequence my breath is slower and longer.
If I was constantly scanning my body and getting paranoid about every itch and twinge I would be doing the wrong thing, just causing more anxiety and filling my lungs with short sharp panic stricken breaths. Instead I am aware of how tired I might be, but I don't just say "oh, I'm tired, I'd better just carry on with what I'm doing and still be tired" I actually make choices throughout my day which reflect what I find. I decide whether changing activity might stop the tiredness, whether doing a bit of yoga stretching might stop my back aching, whether a lie on the the bed with an audiobook might be enough of a rest, or whether a meditation or sleep might be even better. By learning what my body is saying I am treating it better and making choices that are right for me, not right for anyone else. I'm listening to me and I'm coming first.
Friday 13 July 2012
Seeing The Lights
So we have been away. In a familiar place, but a different view from the kitchen window and even more crazy on-street parking. (but that is another tale!)
Lights have come into my line of sight for the last 20-odd years. My Dad always had migraines in the Spring, when he would drive to work with the rising sun facing him, the low blinding light would bring on headaches which would force a shortened day at work and an afternoon and evening in bed. My sister and I both took on this trait, my sister with regular migraines which last for days and myself with seizures and headaches. The medication I take for the epilepsy has helped a great deal but when I find a dark space with fluorescent tubes, low ceilings, "green" natural-light light bulbs or just far too many spotlights in a space with no natural light I can have a reaction pretty quickly. Yesterday I went into a Waterstones book shop. Pretty from the outside, and perfect for wanting to shelter from the rain. It was dark, low shop, in an old building which went a long way back and had a lot of ceiling lights. Most of the front window was taken up with displays and stickers so basically no natural light was getting in. I saw a few children's books and started to flick (through the books, not my hair!). I noticed the books, not the lights at first- I can't start being paranoid about every shop, judging whether I should or shouldn't go in, I would never go anywhere- never leave the house as the sun can give me migraines!
I only realised something was wrong when I felt a choking sensation. My stomach was retching, My head was beginning to spin.
'Now what?' I thought, 'was it the Qi energy massage I had in the morning' surely that was supposed to have the opposite effect!
'Am I too tired, have I over-done it again!'
'LIGHTS'
Get out, find some natural light.
I couldn't see OH, neither could I see anyone who might be able to help.
I moved towards the door and did some heavy breathing. You might be thinking, this can't be an epileptic, if it was, she would have gone down by now and would be convulsing on the floor. All this happened within about 5 seconds and I have the experience now (yucky though that experience has been) to treat the onset of gradual onset seizures differently. With the lights, it takes a while to hit me where it hurts and therefore I have a chance to stop it in it's tracks. My medication also has enough control to serve me well in times like these. After the Qi treatment I found a new inspiration- I had to rid my body of all the negative energy that had built up the the last few minutes. Standing by the door and facing the natural light, I started breathing in through my nose, and taking a long, slow, breath out of my mouth- this wasn't just a long, slow, breath, this was a long, slow, hurricane. I had also learned another Yoga breath the previous evening, which uses only the stomach muscles to control the breath and prevents hyperventilation. It was working. Within about two minutes I was able to speak again and told an assistant that I had epilepsy and needed my husband as I didn't feel well. He was with me in a couple of minutes. I was able to leave the shop, and connect with him by holding his hand, continue the breathing and walking (yes, walking!!!) back to the car.
Looking back, just ten minutes afterwards, I knew I could have collapsed on the floor and just let it happen, but it is the combination of everything I am doing that has helped me deal with this differently. No one was there to panic around me, to say "lie down, let me help you! OMG, what are you doing! I'll call an ambulance!" I had to deal with this myself. And it was the meditation, the yoga, the understanding of how the energy systems work in the body that pulled me through. I used to go into victim mode as I hadn't been given another option. And quite right too. My goodness it was scary and I wouldn't wish it on anyone. It has taken me over 20 years to deal with a seizure like this and from the reaction I was having, if I had decided to let it happen and just fallen on the floor, I could have ended up in a hospital as the seizures would have kept on coming, those lights are invasive and give anyone headaches. I'm just pleased I have found a new confidence from this experience, I'm sure there may well be another full seizure in my life, but I have learned enough now to make them as few and far between as possible!
Lights have come into my line of sight for the last 20-odd years. My Dad always had migraines in the Spring, when he would drive to work with the rising sun facing him, the low blinding light would bring on headaches which would force a shortened day at work and an afternoon and evening in bed. My sister and I both took on this trait, my sister with regular migraines which last for days and myself with seizures and headaches. The medication I take for the epilepsy has helped a great deal but when I find a dark space with fluorescent tubes, low ceilings, "green" natural-light light bulbs or just far too many spotlights in a space with no natural light I can have a reaction pretty quickly. Yesterday I went into a Waterstones book shop. Pretty from the outside, and perfect for wanting to shelter from the rain. It was dark, low shop, in an old building which went a long way back and had a lot of ceiling lights. Most of the front window was taken up with displays and stickers so basically no natural light was getting in. I saw a few children's books and started to flick (through the books, not my hair!). I noticed the books, not the lights at first- I can't start being paranoid about every shop, judging whether I should or shouldn't go in, I would never go anywhere- never leave the house as the sun can give me migraines!
I only realised something was wrong when I felt a choking sensation. My stomach was retching, My head was beginning to spin.
'Now what?' I thought, 'was it the Qi energy massage I had in the morning' surely that was supposed to have the opposite effect!
'Am I too tired, have I over-done it again!'
'LIGHTS'
Get out, find some natural light.
I couldn't see OH, neither could I see anyone who might be able to help.
I moved towards the door and did some heavy breathing. You might be thinking, this can't be an epileptic, if it was, she would have gone down by now and would be convulsing on the floor. All this happened within about 5 seconds and I have the experience now (yucky though that experience has been) to treat the onset of gradual onset seizures differently. With the lights, it takes a while to hit me where it hurts and therefore I have a chance to stop it in it's tracks. My medication also has enough control to serve me well in times like these. After the Qi treatment I found a new inspiration- I had to rid my body of all the negative energy that had built up the the last few minutes. Standing by the door and facing the natural light, I started breathing in through my nose, and taking a long, slow, breath out of my mouth- this wasn't just a long, slow, breath, this was a long, slow, hurricane. I had also learned another Yoga breath the previous evening, which uses only the stomach muscles to control the breath and prevents hyperventilation. It was working. Within about two minutes I was able to speak again and told an assistant that I had epilepsy and needed my husband as I didn't feel well. He was with me in a couple of minutes. I was able to leave the shop, and connect with him by holding his hand, continue the breathing and walking (yes, walking!!!) back to the car.
Looking back, just ten minutes afterwards, I knew I could have collapsed on the floor and just let it happen, but it is the combination of everything I am doing that has helped me deal with this differently. No one was there to panic around me, to say "lie down, let me help you! OMG, what are you doing! I'll call an ambulance!" I had to deal with this myself. And it was the meditation, the yoga, the understanding of how the energy systems work in the body that pulled me through. I used to go into victim mode as I hadn't been given another option. And quite right too. My goodness it was scary and I wouldn't wish it on anyone. It has taken me over 20 years to deal with a seizure like this and from the reaction I was having, if I had decided to let it happen and just fallen on the floor, I could have ended up in a hospital as the seizures would have kept on coming, those lights are invasive and give anyone headaches. I'm just pleased I have found a new confidence from this experience, I'm sure there may well be another full seizure in my life, but I have learned enough now to make them as few and far between as possible!
Michelangelo:
Faith in one's self... is the best and safest course.
Now this one I have to remember.
And he wasn't a bad painter either...
Now imagine the Sistine chapel
(If anyone has any ideas on how to get photos on this thing using the iPad, I would be extremely grateful for the advice!)
Thursday 12 July 2012
Helen Keller:
Dreams are renewable. No matter what our age or condition, there are still untapped possibilities within us and new beauty waiting to be born.
Well, I am already beautiful! And I am still dreaming...
Wednesday 11 July 2012
Tuesday 10 July 2012
Hecato, Greek philosopher:
What progress, you ask, have I made? I have begun to be a friend to myself.
That's the spirit!
Monday 9 July 2012
Faith Comes With Adversity and Diversity
Or does it?
My goodness what a day, what a weekend! Full of adversity so my strategy has had to be diversion.
We decided to go to my sister's for my husband's break from work after all the to-ing and fro-ing about what to do with his time off. My sister is away and as we have been here before it seemed like a good option. I ordered a week's worth of food to be collected at the local Waitrose and we were all set.
Friday afternoon before we left I noticed a fault on the screen of my iPad- my passport to the world was out of date! Well what could I do, sort it now, or wait until we had been away and then returned? I rang Apple technical support to find out what my options were and as we were within our first year of ownership and it was a fault rather than my fault, they would replace the iPad at our nearest convenience. All good. There is Apple store near my sister's place so all was organised with an appointment the next morning. However when we arrived at her place that evening we realised that the password to her router was not the original one printed on the back of the marvellous box and so the iPad, even though it would connect with a dodgy looking screen, could not connect. OK I thought we'll sort everything out with a simple text and hey-presto!
Not so.
Saturday morning's appointment was as we expected to some degree, the iPad was replaced and they agreed to upload everything to the "cloud" so I wouldn't loose any data and they would allow us to wait for the data to completely restore on the new iPad as we were without wi-fi, or broadband of any kind. So the story continues. When we collected later on in the day they helped me set up the passwords to a lot of the apps and find any apps which hadn't reloaded. This included setting up the mail accounts again- crazy mindless nonsense from Google so I can't access the blogger account neither can I receive my blog emails!!!! However my other email addresses are working. No matter how many "change Password" attempts we tried the account just would not set itself up without failing!
Later in the day I realised that all the data actually needed prompting to reload, we spent another 30 minutes in Apple store, using their wi-fi, suggesting to the iPad that I wanted to open apps and use books and podcasts so that they would reload. This just went on and on for the next 24 hours as we still hadn't found the router password, my sister was obviously not receiving the messages; by this time we had sent text and email.
So by Sunday evening I had prepared myself to go to bed and enjoy a well-loved calming 35 minute yoga nidra meditation only to discover that my iPad had of course lost it- if I had access to the iMac at home I could reload it through iTunes but I didn't! I was without my regular meditations, stored audios and videos of recovery advice and as we didn't have wi-fi I couldn't access the website and forums or even hope to find our iMac at home to link up over time and space (well space, but time and space just sounds better!)
So here I sit, Sunday evening wondering what will happen in the next few days, will we find wi-fi? Will we go home because I just can't live without my towers of strength? Is this a lesson to find myself and give myself strength through adversity? I need to find faith in myself and believe that technology can only take me so far- until I have the physical power to take long walks for calming meditation and enjoy the rain by squelching through mud-filled puddles, I will find it difficult in these times so I must find an inner energy and pull myself through.
My goodness what a day, what a weekend! Full of adversity so my strategy has had to be diversion.
We decided to go to my sister's for my husband's break from work after all the to-ing and fro-ing about what to do with his time off. My sister is away and as we have been here before it seemed like a good option. I ordered a week's worth of food to be collected at the local Waitrose and we were all set.
Friday afternoon before we left I noticed a fault on the screen of my iPad- my passport to the world was out of date! Well what could I do, sort it now, or wait until we had been away and then returned? I rang Apple technical support to find out what my options were and as we were within our first year of ownership and it was a fault rather than my fault, they would replace the iPad at our nearest convenience. All good. There is Apple store near my sister's place so all was organised with an appointment the next morning. However when we arrived at her place that evening we realised that the password to her router was not the original one printed on the back of the marvellous box and so the iPad, even though it would connect with a dodgy looking screen, could not connect. OK I thought we'll sort everything out with a simple text and hey-presto!
Not so.
Saturday morning's appointment was as we expected to some degree, the iPad was replaced and they agreed to upload everything to the "cloud" so I wouldn't loose any data and they would allow us to wait for the data to completely restore on the new iPad as we were without wi-fi, or broadband of any kind. So the story continues. When we collected later on in the day they helped me set up the passwords to a lot of the apps and find any apps which hadn't reloaded. This included setting up the mail accounts again- crazy mindless nonsense from Google so I can't access the blogger account neither can I receive my blog emails!!!! However my other email addresses are working. No matter how many "change Password" attempts we tried the account just would not set itself up without failing!
Later in the day I realised that all the data actually needed prompting to reload, we spent another 30 minutes in Apple store, using their wi-fi, suggesting to the iPad that I wanted to open apps and use books and podcasts so that they would reload. This just went on and on for the next 24 hours as we still hadn't found the router password, my sister was obviously not receiving the messages; by this time we had sent text and email.
So by Sunday evening I had prepared myself to go to bed and enjoy a well-loved calming 35 minute yoga nidra meditation only to discover that my iPad had of course lost it- if I had access to the iMac at home I could reload it through iTunes but I didn't! I was without my regular meditations, stored audios and videos of recovery advice and as we didn't have wi-fi I couldn't access the website and forums or even hope to find our iMac at home to link up over time and space (well space, but time and space just sounds better!)
So here I sit, Sunday evening wondering what will happen in the next few days, will we find wi-fi? Will we go home because I just can't live without my towers of strength? Is this a lesson to find myself and give myself strength through adversity? I need to find faith in myself and believe that technology can only take me so far- until I have the physical power to take long walks for calming meditation and enjoy the rain by squelching through mud-filled puddles, I will find it difficult in these times so I must find an inner energy and pull myself through.
Chinese Proverb:
Be not afraid of growing slowly; be afraid only of standing still.
Something to keep me going on these oh so... Sslll..o...wwww D..aaaaa.aaa...yyy.ssss!
Sunday 8 July 2012
What Do NICE and WHO say about ME?
Well, well, well. As I mentioned in a recent blog, the guidelines and classifications for ME have been controversial to say the least.
In the last twenty years (I do not have the resources to define exactly when!) there were rumours afoot that the WHO (World Health Organisation) was to classify ME as a psychological disorder. By using various words and phrases to describe the "disease" rather than simply Myalgic Encephalomyelitis and/or Chronic Fatigue Syndrome it appeared to be in both the Nervous Disease and Psychological Disease classifications simultaneously. This confused charities, media, and patients worldwide not to mention stirred the idea that ME was "all in your head". The title "yuppie flu" was rife at this time too so the reclassification suggestions didn't help matters at all. Post-viral fatigue, Malaise, Encephalopathy, are all classified somewhere and under different headings.
The most difficult time for UK sufferers was when the UK version of the WHO Guide to mental health in primary care was published, with editing to follow UK Psychiatry classification, suggesting that ME was in fact a mental disorder.
As far as NICE (National Institute for health and Clinical Excellence) goes, the UK continues to slowly improve the guidelines. However, Graded Exercise Therapy is still suggested for mild to moderate sufferers. GET suggests strict exercise programmes everyday, which does not take note that if a rest day is needed, exercise is likely to set the patient backwards, rather than forwards on the recovery path. The slightest thing can cause the need for a rest day, from a cold or hay-fever, to family or financial worries. There was a debate in Westminster in February of last year, to iron out the wrinkles so as I say it has improved from the previous guidelines but could be improved further. It would also be good to see more NHS specialist clinics working with proven methods of treatment. Most of the clinics which currently give the best results are funded by private health options and the methods have researched and trialled by charitable giving and lone soldiers out to prove that recovery can be found for the most difficult of cases.
In the last twenty years (I do not have the resources to define exactly when!) there were rumours afoot that the WHO (World Health Organisation) was to classify ME as a psychological disorder. By using various words and phrases to describe the "disease" rather than simply Myalgic Encephalomyelitis and/or Chronic Fatigue Syndrome it appeared to be in both the Nervous Disease and Psychological Disease classifications simultaneously. This confused charities, media, and patients worldwide not to mention stirred the idea that ME was "all in your head". The title "yuppie flu" was rife at this time too so the reclassification suggestions didn't help matters at all. Post-viral fatigue, Malaise, Encephalopathy, are all classified somewhere and under different headings.
The most difficult time for UK sufferers was when the UK version of the WHO Guide to mental health in primary care was published, with editing to follow UK Psychiatry classification, suggesting that ME was in fact a mental disorder.
As far as NICE (National Institute for health and Clinical Excellence) goes, the UK continues to slowly improve the guidelines. However, Graded Exercise Therapy is still suggested for mild to moderate sufferers. GET suggests strict exercise programmes everyday, which does not take note that if a rest day is needed, exercise is likely to set the patient backwards, rather than forwards on the recovery path. The slightest thing can cause the need for a rest day, from a cold or hay-fever, to family or financial worries. There was a debate in Westminster in February of last year, to iron out the wrinkles so as I say it has improved from the previous guidelines but could be improved further. It would also be good to see more NHS specialist clinics working with proven methods of treatment. Most of the clinics which currently give the best results are funded by private health options and the methods have researched and trialled by charitable giving and lone soldiers out to prove that recovery can be found for the most difficult of cases.
Saturday 7 July 2012
My Friends Are Leaving Me In Their Droves!
Yes, find me the tissue box, I am in a sorry state.
All my friends are leaving and I see it as a personal slight.
Only kidding! It is odd though. Two of my most supportive friends are moving away this summer with families in tow- one immediately, one when they can find a house to buy or rent near the new job. It is another lesson to rely on myself first. I have to do that every day; by pacing carefully, saying "no" when my body sends me a symptom as a warning sign, resting regularly and using all the tools consistently to aid my recovery. Support will be there on the end of the phone, in emails and Skype chats, it is just rather difficult to know I can't have a hug or morning in the Coffee shop with them when I need it.
This affliction, illness, condition, is difficult to understand and for years not even the highest medical authorities have understood it (even NICE and WHO continue to create controversy over its classification and guidelines for treatment), so to just find a couple of longterm understanding friends, who could theoretically turn up on the doorstep whenever I needed them and have them suddenly not there, is quite a blow.
The good side to this is how liberating it is. To see people think of themselves first. Just how life should be; you can't help other people out of a burning building if you're personally careless and get stuck without breathing apparatus. So what could I do in my future by taking their motivational lead? Go and live in Canada for 3 years? spend six months on an Indian hillside discovering myself in Zen meditation? become self-sufficient with chickens and a goat in the garden? or even spend the rest of my life writing endless unpublished books and blogs about food, travel, knitting, gardening, yoga and playing piano?
I have to take a joy from what they are achieving; by doing what is right for themselves and their families they are living their life as they choose. With the advantages of modern technology we can have friends across the world and grow from their experiences. For the moment they do seem farther away than I would like, but with my recovery will come the sustained ability to keep in touch, visit regularly and of course we will continue to support and love each other as much as we do now.
All my friends are leaving and I see it as a personal slight.
Only kidding! It is odd though. Two of my most supportive friends are moving away this summer with families in tow- one immediately, one when they can find a house to buy or rent near the new job. It is another lesson to rely on myself first. I have to do that every day; by pacing carefully, saying "no" when my body sends me a symptom as a warning sign, resting regularly and using all the tools consistently to aid my recovery. Support will be there on the end of the phone, in emails and Skype chats, it is just rather difficult to know I can't have a hug or morning in the Coffee shop with them when I need it.
This affliction, illness, condition, is difficult to understand and for years not even the highest medical authorities have understood it (even NICE and WHO continue to create controversy over its classification and guidelines for treatment), so to just find a couple of longterm understanding friends, who could theoretically turn up on the doorstep whenever I needed them and have them suddenly not there, is quite a blow.
The good side to this is how liberating it is. To see people think of themselves first. Just how life should be; you can't help other people out of a burning building if you're personally careless and get stuck without breathing apparatus. So what could I do in my future by taking their motivational lead? Go and live in Canada for 3 years? spend six months on an Indian hillside discovering myself in Zen meditation? become self-sufficient with chickens and a goat in the garden? or even spend the rest of my life writing endless unpublished books and blogs about food, travel, knitting, gardening, yoga and playing piano?
I have to take a joy from what they are achieving; by doing what is right for themselves and their families they are living their life as they choose. With the advantages of modern technology we can have friends across the world and grow from their experiences. For the moment they do seem farther away than I would like, but with my recovery will come the sustained ability to keep in touch, visit regularly and of course we will continue to support and love each other as much as we do now.
Friday 6 July 2012
Holiday?
Do we or don't we? For the last year we have avoided going away. Two nights away from home for a family wedding in April has been it for 2012. Last summer we went to stay at my sister's. Familiarity is so necessary when you're ill. Knowing where things are, being able to get in the car and find a familiar place to eat when the energy to cook escapes you, or even knowing where the nearest shop is for a healthy microwave meal and loaf of bread when desperation kicks in.
Moving around our home is so easy. We are in a bungalow with all the rooms coming off a main hallway, the garden is sheltered and the area is quiet. I need that so much. The rooms are no more that twenty shuffling paces from one to the other. And apart from one step to the front door and three steps to the back garden we have no issues with long sloping paths or steep staircases. I know my space and for every other holiday in the last year my husband has taken time off work, we have gone shopping for one day, he has enjoyed some time for himself another day, and we have had lunch out at the local pub and maybe visited a local coffee shop in the peace and quiet of non-weekend mayhem.
Staying with friends includes more conversations (link) maybe not eating comfortable foods (I'm sure all of you will have stayed with someone who eats far too much sugary breakfast cereal, processed meat, white bread and has practically no fruit or vegetables in the house!- which can also be the case in some B&Bs!) So what is our better option?
Self catering involves catering for ourselves- not much of a break unless we eat out all the time and unless we have been to the place before the results may not be as nice as the brochure suggests. Two years ago we stayed in a place where the owner refused to believe the oven wasn't working- "look the light goes off when it's up to temperature" yes but that didn't mean the thermostat was calibrated so actually the oven was probably 100 degrees lower than suggested! We've also stayed in a "bungalow" with five steep steps to the front door... Nice touch! Another interesting flat was within walking distance of a local shop. That walking distance was actually a steep twenty minutes away-not sure I would really fancy that with the wheelchair!
So we are undecided. We will try to find a use for OH's holiday from work. Maybe it will be a couple of days at my sister's again or it might just be sitting on the sofa and listening to the rain falling down the chimney in the middle of the British summer!
Moving around our home is so easy. We are in a bungalow with all the rooms coming off a main hallway, the garden is sheltered and the area is quiet. I need that so much. The rooms are no more that twenty shuffling paces from one to the other. And apart from one step to the front door and three steps to the back garden we have no issues with long sloping paths or steep staircases. I know my space and for every other holiday in the last year my husband has taken time off work, we have gone shopping for one day, he has enjoyed some time for himself another day, and we have had lunch out at the local pub and maybe visited a local coffee shop in the peace and quiet of non-weekend mayhem.
Staying with friends includes more conversations (link) maybe not eating comfortable foods (I'm sure all of you will have stayed with someone who eats far too much sugary breakfast cereal, processed meat, white bread and has practically no fruit or vegetables in the house!- which can also be the case in some B&Bs!) So what is our better option?
Self catering involves catering for ourselves- not much of a break unless we eat out all the time and unless we have been to the place before the results may not be as nice as the brochure suggests. Two years ago we stayed in a place where the owner refused to believe the oven wasn't working- "look the light goes off when it's up to temperature" yes but that didn't mean the thermostat was calibrated so actually the oven was probably 100 degrees lower than suggested! We've also stayed in a "bungalow" with five steep steps to the front door... Nice touch! Another interesting flat was within walking distance of a local shop. That walking distance was actually a steep twenty minutes away-not sure I would really fancy that with the wheelchair!
So we are undecided. We will try to find a use for OH's holiday from work. Maybe it will be a couple of days at my sister's again or it might just be sitting on the sofa and listening to the rain falling down the chimney in the middle of the British summer!
Tennis
Martina Navratilova:
I have watched a little of it this week, so this is aimed at Andy as well as myself.
Just go out there and do what you've got to do.
I have watched a little of it this week, so this is aimed at Andy as well as myself.
Thursday 5 July 2012
Conversations Are Difficult
OK, we all have awkward conversations occasionally- maybe the need to tell someone something is there so the topic might carefully be avoided; it is a lot easier than getting a fist in your face!
Apart from a very few people, all my conversations are difficult. Thinking, speaking, being aware of body language and social rules, maybe being in an unfamiliar situation or on an uncomfortable sofa, it all takes so much out of me that I can flake after 30 minutes.
Simply mentioning the fact that I use a wheelchair or that I finally had a breakthrough with the disability benefit, can bring up a whole plethora of difficulty; in some conversations it would just pass on by, but with others it becomes a whole new issue. Explaining, defending, becoming personally disbelieved or degraded. These conversations are few and far between but they happen none the less and when they do I can be put down energy-wise for days at a time.
More recently just socialising more than two or three days in a week has been my problem. Oh, an hour for a cup of tea will be fine, but when it lasts longer because we need to see each other and want to catch up it can also become exhausting. I attempted this a few weeks ago. I loved seeing them and wanted to catch up so desperately that I let the time go by, continued talking and I'm shot for the next few hours.
I also have a husband to converse with every day; peace and quiet doesn't enter the house for more than a few hours at a time. Having him there is so much more of a blessing, but some days I have to stick metaphorical gaffer tape over his mouth as I just can't concentrate on another conversation.
Just a knock on the door out of the blue, as simple as the gas network needing to service the meter, adds to the confusion. Something being delivered which takes more than five minutes of conversation to sign the right pieces of paper and get whatever it is actually off the van and in the house. All these things add up and yet again my conversation has been and gone for the day.
Another thing which needs more monitoring. I have to do it so carefully though as more monitoring can lead to more worry, confusion and anxiety- the very things I am trying to eliminate from my life. Re-integration into the big wide world of health is all very well, I just wish sometimes it could happen overnight!
Apart from a very few people, all my conversations are difficult. Thinking, speaking, being aware of body language and social rules, maybe being in an unfamiliar situation or on an uncomfortable sofa, it all takes so much out of me that I can flake after 30 minutes.
Simply mentioning the fact that I use a wheelchair or that I finally had a breakthrough with the disability benefit, can bring up a whole plethora of difficulty; in some conversations it would just pass on by, but with others it becomes a whole new issue. Explaining, defending, becoming personally disbelieved or degraded. These conversations are few and far between but they happen none the less and when they do I can be put down energy-wise for days at a time.
More recently just socialising more than two or three days in a week has been my problem. Oh, an hour for a cup of tea will be fine, but when it lasts longer because we need to see each other and want to catch up it can also become exhausting. I attempted this a few weeks ago. I loved seeing them and wanted to catch up so desperately that I let the time go by, continued talking and I'm shot for the next few hours.
I also have a husband to converse with every day; peace and quiet doesn't enter the house for more than a few hours at a time. Having him there is so much more of a blessing, but some days I have to stick metaphorical gaffer tape over his mouth as I just can't concentrate on another conversation.
Just a knock on the door out of the blue, as simple as the gas network needing to service the meter, adds to the confusion. Something being delivered which takes more than five minutes of conversation to sign the right pieces of paper and get whatever it is actually off the van and in the house. All these things add up and yet again my conversation has been and gone for the day.
Another thing which needs more monitoring. I have to do it so carefully though as more monitoring can lead to more worry, confusion and anxiety- the very things I am trying to eliminate from my life. Re-integration into the big wide world of health is all very well, I just wish sometimes it could happen overnight!
Wednesday 4 July 2012
From Sufferer to Patient
Watch out, this one gets deep!
This time last year and for the previous 23 years I was an ME sufferer. I had symptoms, I had good days and bad days, I slept 12-14 hours some days, with naps in-between. I let myself do too much; I didn't have any choice; I had to continue living and be happy as I was. Some days were more of a struggle than others, but I was a sufferer.
Even in January this year I called myself a sufferer. Why? because any illness is something to suffer, something to detest, battle and solve ASAP. Flu, hay-fever, sore throat, headache. They are by rights awful, we suffer, as human beings are not supposed to have health obstacles along the way. We have been trained to expect miracle cures for the worst problems and paracetamol, ibuprofen, creams and operations to solve them when miracles aren't quick in coming. Humans are healthy are strong. Those who are unhealthy are pitied at best, told to "get on with it and stop moaning" at worst. So ME is something to suffer, pretend it is not there and "get over it"
I suffered.
I now am an ME patient and more importantly I am a recovering ME patient. I am Me, not ME. Armed with scientific reading and knowledge, of research, proven methods of assailing this beast, I can fight the good fight with confidence. Knowing my body inside and out, gives me insights. I will treat Me with respect and discover that the respect will be reciprocated.
So I am an ME patient, I am Me. I do not suffer, I Be.
This time last year and for the previous 23 years I was an ME sufferer. I had symptoms, I had good days and bad days, I slept 12-14 hours some days, with naps in-between. I let myself do too much; I didn't have any choice; I had to continue living and be happy as I was. Some days were more of a struggle than others, but I was a sufferer.
Even in January this year I called myself a sufferer. Why? because any illness is something to suffer, something to detest, battle and solve ASAP. Flu, hay-fever, sore throat, headache. They are by rights awful, we suffer, as human beings are not supposed to have health obstacles along the way. We have been trained to expect miracle cures for the worst problems and paracetamol, ibuprofen, creams and operations to solve them when miracles aren't quick in coming. Humans are healthy are strong. Those who are unhealthy are pitied at best, told to "get on with it and stop moaning" at worst. So ME is something to suffer, pretend it is not there and "get over it"
I suffered.
I now am an ME patient and more importantly I am a recovering ME patient. I am Me, not ME. Armed with scientific reading and knowledge, of research, proven methods of assailing this beast, I can fight the good fight with confidence. Knowing my body inside and out, gives me insights. I will treat Me with respect and discover that the respect will be reciprocated.
So I am an ME patient, I am Me. I do not suffer, I Be.
Tuesday 3 July 2012
Unreal
I heard someone say this word the other day. Some of you will know exactly where I am coming from when I say I have so much familiarity with 'unrealness'
For years I had bouts of being unreal. It might last for hours, days at a time. Sometimes weeks of unrealness would encompass my whole being.
The lightheadedness, dizzy spells, lack of focus in the eyes and weird feelings in my mouth. Like the saliva had taken on a new form of being; disappeared and comeback from an alien's mouth. The unreal feeling is something that a lot of ME patients will connect with. It is a state of not knowing where to turn, who to ask questions of or whether or not, if the mouth is opened, the words will actually move through the nervous system from the head to the mouth. For me, when it went this far I was in a scary place.
I did too much last week. talking to too many people, or attempting too many exciting things in my life, too much of things one after the other. Twice I sat in bed with the TV on and DVD player ready to play a familiar film- Sleepless In Seattle- to give me a focus, a centre, a place of comfort. I know the words off by heart. I can find an easy road back to speaking and understanding language and laughter just by hearing the same words whenever I am in this state. Unreal-ness has come to me over the years and I have used different films to find the focus- When Harry Met Sally was one of the first, also Steel Magnolias, Pride and Prejudice with Jennifer Ehle. I even used to watch the snooker and cricket for hours at a time. Really starting to understand the game more than ever, to find a focus and a way back to cognitive awareness.
So I need to continue at my pace, realise how much little things can influence my day to day existence. It isn't just a case of 'over-doing it' it is realising how many little things too close together can make such a big difference. Every little thing has different consequences- I can do daily beginner yoga classes in my living room, alone, quiet; but I can not do large amounts of socialising, visual stimulation, noise and emotion. As ever it is not pushing too far, too fast. Having patience and taking one step, or even half a step, at a time. Assessing each day as it comes and not being afraid to say "no".
For years I had bouts of being unreal. It might last for hours, days at a time. Sometimes weeks of unrealness would encompass my whole being.
The lightheadedness, dizzy spells, lack of focus in the eyes and weird feelings in my mouth. Like the saliva had taken on a new form of being; disappeared and comeback from an alien's mouth. The unreal feeling is something that a lot of ME patients will connect with. It is a state of not knowing where to turn, who to ask questions of or whether or not, if the mouth is opened, the words will actually move through the nervous system from the head to the mouth. For me, when it went this far I was in a scary place.
I did too much last week. talking to too many people, or attempting too many exciting things in my life, too much of things one after the other. Twice I sat in bed with the TV on and DVD player ready to play a familiar film- Sleepless In Seattle- to give me a focus, a centre, a place of comfort. I know the words off by heart. I can find an easy road back to speaking and understanding language and laughter just by hearing the same words whenever I am in this state. Unreal-ness has come to me over the years and I have used different films to find the focus- When Harry Met Sally was one of the first, also Steel Magnolias, Pride and Prejudice with Jennifer Ehle. I even used to watch the snooker and cricket for hours at a time. Really starting to understand the game more than ever, to find a focus and a way back to cognitive awareness.
So I need to continue at my pace, realise how much little things can influence my day to day existence. It isn't just a case of 'over-doing it' it is realising how many little things too close together can make such a big difference. Every little thing has different consequences- I can do daily beginner yoga classes in my living room, alone, quiet; but I can not do large amounts of socialising, visual stimulation, noise and emotion. As ever it is not pushing too far, too fast. Having patience and taking one step, or even half a step, at a time. Assessing each day as it comes and not being afraid to say "no".
Monday 2 July 2012
Out of Breath
Walking up a few steps, bending down and trying to pick something up, walking and carrying something. Why, oh, Why?
I have to be patient but it is so difficult. All the discipline in the world can't help my disappointment. A hug and reassurance helps and I have to just give into the fact that I just can't do some of the smallest things yet.
I was standing at the hob yesterday, turning over chicken breasts as they sizzled away in garlic butter (a great find in the supermarket making the simplest food that little more interesting with very little effort!). Did I stand happily? Did I need help? was my breath calm and unconcerned. Ummm. I was happy, I didn't ask for help, but my breath was here and there. I noticed how difficult it was at times, finding undizziness(interesting word!) and focus.
I put myself through it to find comfort and normality in life. To achieve little things through the day.
Oh boy.
What will I be when I attempt some stairs?(we live in a bungalow) Currently stairs are impossible. A few steps or a slope have me slowing down and out of breath. I need to practice the yoga, do more around the house, but only when I can. Being unable to do such things without loosing the breath is a sign that I need to slow down, give myself time and be patient.
When the breath speeds up and shows me that I need to step back and find focus in doing less or slowing down a little, I have to accept that- just as I accept any symptoms as par for the course. Symptoms as simple as an uneasy breath are there to show me that my body is uneasy, I have to take note and answer without question. To question takes too long and too much anxiety. I am recovering, I am finding a different way of being and I have to accept how long it takes; no matter how long it takes.
I have to be patient but it is so difficult. All the discipline in the world can't help my disappointment. A hug and reassurance helps and I have to just give into the fact that I just can't do some of the smallest things yet.
I was standing at the hob yesterday, turning over chicken breasts as they sizzled away in garlic butter (a great find in the supermarket making the simplest food that little more interesting with very little effort!). Did I stand happily? Did I need help? was my breath calm and unconcerned. Ummm. I was happy, I didn't ask for help, but my breath was here and there. I noticed how difficult it was at times, finding undizziness(interesting word!) and focus.
I put myself through it to find comfort and normality in life. To achieve little things through the day.
Oh boy.
What will I be when I attempt some stairs?(we live in a bungalow) Currently stairs are impossible. A few steps or a slope have me slowing down and out of breath. I need to practice the yoga, do more around the house, but only when I can. Being unable to do such things without loosing the breath is a sign that I need to slow down, give myself time and be patient.
When the breath speeds up and shows me that I need to step back and find focus in doing less or slowing down a little, I have to accept that- just as I accept any symptoms as par for the course. Symptoms as simple as an uneasy breath are there to show me that my body is uneasy, I have to take note and answer without question. To question takes too long and too much anxiety. I am recovering, I am finding a different way of being and I have to accept how long it takes; no matter how long it takes.
Sunday 1 July 2012
Comfort Food
Who doesn't need comfort food? Own up if you don't, you will be put on a pedestal and displayed in Trafalgar Square. We all have something we love. Be it a glass of wine, a creamy latte, a bar of chocolate, a large packet of crisps or even a bowl of fruit. My brother, the healthiest eater I know, loves his After Eights, my husband goes for maltesers or a Caffe Nero Hot Chocolate and mine is...
Carob banana with all the trimmings...
You what?
Yes, for the last few years we have been perfecting this. For many years I could not eat sugar, if I did I had the worst indigestion ever imagined- sometimes the physical stress was bad enough to bring on a seizure. As this improved and I began to eat fruit again banana became my fruit of choice.
The Carob became my love as soon as I was given this restricted diet at the age of 18. It was the only alternative to chocolate available. I had to eat the sugar-free kind and only occasionally as it too could become addictive.
It soon became apparent that by melting this it was even yummier and spreading it on oatcakes was (and still is) divine. Eating them warm or saving them until later has been my main-stay for most of our married life- we perfected it with our microwave.
Over the BBQ my Mum used to wrap bananas in foil having filled them with various types of chocolate drops, nuts, raisins. As we were eating the main course the bananas would warm up and all the additions would mix in together. This was the inspiration for my ultimate sugar-free comfort:
Flakes of Carob poked into a peeled banana and microwaved for 10-20 seconds at a time, until it begins to melt.
Then place in bowl and spoon lashings of natural yoghurt around the sides and break up two or three oatcakes into small pieces as a final flourish to add a crunch.
So there is heat and coolness, crunch and smoothness, tart and sweetness all in one bowl. Comfort all round.
Finish it off with a mug of red-bush tea with a little milk and I'm all set for an evening on the sofa.
Carob banana with all the trimmings...
You what?
Yes, for the last few years we have been perfecting this. For many years I could not eat sugar, if I did I had the worst indigestion ever imagined- sometimes the physical stress was bad enough to bring on a seizure. As this improved and I began to eat fruit again banana became my fruit of choice.
The Carob became my love as soon as I was given this restricted diet at the age of 18. It was the only alternative to chocolate available. I had to eat the sugar-free kind and only occasionally as it too could become addictive.
It soon became apparent that by melting this it was even yummier and spreading it on oatcakes was (and still is) divine. Eating them warm or saving them until later has been my main-stay for most of our married life- we perfected it with our microwave.
Over the BBQ my Mum used to wrap bananas in foil having filled them with various types of chocolate drops, nuts, raisins. As we were eating the main course the bananas would warm up and all the additions would mix in together. This was the inspiration for my ultimate sugar-free comfort:
Flakes of Carob poked into a peeled banana and microwaved for 10-20 seconds at a time, until it begins to melt.
Then place in bowl and spoon lashings of natural yoghurt around the sides and break up two or three oatcakes into small pieces as a final flourish to add a crunch.
So there is heat and coolness, crunch and smoothness, tart and sweetness all in one bowl. Comfort all round.
Finish it off with a mug of red-bush tea with a little milk and I'm all set for an evening on the sofa.
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