How simple can that be? I went for a walk this morning. It was freezing cold, literally, about one degree Celsius. My gloves have holes in them (for a knitter that is kind of embarrassing, I should be knitting my own replacements, not waiting until I find them in a shop!) My two pairs of leggings under my jeans kept me cosy, my various tops and jumpers, hat, scarf and cosy coat kept me warm. But how do I walk?
I began walking again last year. With limited distance goals, after just doing laps of the garden, I began going about one hundred and fifty paces, then back again. Which took me about two houses down the road. As the weeks went by I increased the distance, not going two days in a row, and only going when I felt well enough during the day. If I felt dizzy, nauseas or tired I stayed home. By the end of the summer, about six months down the road, I could go round the block two or three times during a good week.
Today I donned my warm layers and headed out, with a rucksack! It was a first time experiment to see if I could manage it and it seemed to work alright. It contained pretty much nothing, but I could carry it. Yeah! I've had things in my pockets before, but never a load on my back. Shopping was my downfall when I tried to walk again four years ago. I failed miserably by taking my purse out with me and thinking I could fill up the fridge with bargains by carrying bag loads home from the local shop. As I said it was a failure. It was one of the things that turned my return to walking into a return to the wheelchair yet again. I am still using the wheelchair, when I'm going a further distance, when I've been using my legs for other things during the day, such as standing in the kitchen or a standing yoga lesson or when I've walked the previous day and am feeling it! It's all about moderation and giving myself time to prepare for any advances.
As far as the process of walking step by step goes, I have a new focus. This came from a walking meditation I learnt last summer. Breathing slowly and feeling each pace. Walking before meant getting somewhere without falling over. It now means finding a view to enjoy, while I decide on my destination. I admire the highest point on the horizon, forget about where I'm going and just enjoy the journey.
Showing posts with label recovery. Show all posts
Showing posts with label recovery. Show all posts
Monday, 25 February 2013
Tuesday, 5 February 2013
Making It Easier
I have read a blog post this morning from The Optimum Health Clinic. It describes the different ways we can approach Discipline in our lives, to help us towards recovery. (See link)
I know I have been all three of the kinds they describe over the last 25 years. I have gone all out and filled my days with lists and rules, managed a timetable, kept charts and diaries for what I do, eat and how much I sleep every day, trying to find clues and answers as to what is going wrong and how I can change. That was me in the early days of this illness. Back then with so little practical help from outside, it seemed the best way to try and understand it for myself. It didn't work. I tried to give myself regular timetables. Forced activity and rest times only ended up giving me what I didn't need when I didn't need it.
I have also been an 'all or nothing' recoverer. In these times, unlike suggested in the blog I have listened to my body on different days. If I wake up feeling great, I go out, enjoy the freedom, party, exercise, socialise. And you know what happens then, I feel awful for the next few days, take it as my illness just being a bit relentless and take another cue from the next morning. Which might suggest lying in bed, asking someone else to make my breakfast, falling asleep in the afternoon. All or nothing has been very close at hand sometimes.
Then, with so much experience and so little progress over the years I have also become one of the ‘I have no self-discipline at all, I can’t make myself do anything ever’ recoverers. This is a difficult one to put into practice as it needs a lot of self-doubt. But when an illness pushes you backwards and backwards, after you've tried so hard to keep going, there is sometimes barely any other route. I would have this approach in between all the others, whenever I felt lousy, it wasn't just the illness anymore, it was my fault, I couldn't follow a timetable, or rules, neither was I self-disciplined enough to get out there and do what I had to do.
So I have had an interesting relationship with discipline over the years!
Making it easier has been for me, finding a way of combining all three. On good days I don't go full out and wear myself to the bone, neither do I follow rules and timetables, I have a few options that I know I can do during the day, I also have a long-term goal setting list, which I can pick from when I'm feeling well enough. So good days give me opportunities to pick from these options and find an easy compromise. On bad days I know I cannot blame the illness, neither can I blame myself. It is usually, very predictable circumstances that have led me to a bad day. For the last ten days it has been my cold and sore throat. An external device, having nothing to do with the ME, just unlucky. Yes I am more debilitated by it than others might be, but I am more debilitated by everyday life than others, so that's hardly surprising. I learn to enjoy my bad days, give myself treats- like favourite films, new DVD box sets, or downloads from LoveFilm! I also let the food slip a bit, and eat a few organic pizzas and puddings with ice creams.
Learning to smile through good days and bad has become my discipline, letting a few tears come if need be, finding strength when I have only enough energy to lie on the sofa during the day and do a legs-up-the-wall yoga pose before bed is my discipline. Don't believe you have to follow rules or scripted health plans to be disciplined, be your very good self!
Tuesday, 18 September 2012
Help Everywhere
I am constantly amazed at how many therapists, doctors, teachers of all kinds are out there offering help to sufferers of ME. All over the internet and in advertisements for massage therapists, yoga teachers, life coaches the helps is there. It is a mind-blowing field of information which can cost a small fortune! Scepticism appears in my mind with so many as ME is a complex illness. Those who have done many supporting studies and have proof of recovery are the ones who catch my interest more.
So many of them are using different approaches towards the same end. The body is in fear, physical confusion and the practitioners help patients find ways of changing these physical patterns. Gentle, kind, loving practitioners offer so much. Some ask a lot of money, some work for donation or offer lower prices for those who can pay only so much, and can run on lower costs due to the charitable foundations attached to the business.
I have just found a book which is titled "Coping with Chronic Fatigue" I must have bought it so many years ago, because it was at the back of a bookcase and I had totally forgotten that I had it! It talks very simply about these familiar methods and puts it all in about 150 pages. (not a bad thing for people who can't read very often and have bad concentration and memory!) The need for personal connection cannot be put into words. So much of my recovery has been in the need for emotional support. My friends, family, specialists, talk to me on a regular basis, suggest new options... but only when I get to those points, not when I have read 3 chapters of a book in 2 weeks. One-to-one help, or methods with videos and information which can be used only when the next stage is reached, is so necessary. I definitely recommend it.
So why is it working for me now and might take longer for someone using the same methods?
Firstly I have been using many of these methods for a long time already, they just never had a name or title and doctor attached to them? I know I had to be in the right place, financially and along my life path to benefit to the extent that I have from working with the specialists I have chosen.
I had worked through so many of my symptoms over so many years and found solutions for these. It took much desperation, determination and a lot of tears! If I hadn't done this I might be taking so much longer to recover to the same point as I am now. I am also in a place with a terrific husband who offers me unconditional support with this journey. I do not work, we are fortunate enough to have family and friends nearby who support me physically and emotionally. Without children or pets I can rest when necessary; I can have a day in bed or a lazy day on the sofa, lie in the garden all afternoon if I choose and have a lift to the surgery whenever I need to go. So many things in my life are going right and it is the years of experience with this illness that has given me the confidence to know what is right and make choices in my life to support that experience.
Wednesday, 22 August 2012
How...
do we recover?
This can be a short or long process, an easy or tough process. Everyone is different and no one will go through the same journey towards recovery. Quite simply the body needs to be retaught how to do things and taught to do things without being afraid. Scream at the top of your voice, like Macaulay Culkin in the film Home Alone "I'm not afraid anymore" and you will notice a new confidence.
From there it is all about patience. I have not recovered yet, but I am well on the way. I feel different inside. My heart doesn't beat like a pig's when an unlikely situation occurs. I don't have so much cognitive exhaustion, as my head is clearing out the stress and worry. By practicing meditation, teaching the body to relax I am on the right path. It is almost like soothing a crying baby; when the symptoms appear, I notice them, ask them why they're here and realise something is needed to soothe those symptoms. It is the ability to step back and see the emotions, feelings, as a message from the body that helps the messages relearn. Yoga has taught me a lot of this, from all sides, meditation, mindfulness, postures.
Yes it is a pain to have to go through this process, yes it doesn't work all the time. I get confused and worried, tired and cross. But the more I notice and change the responses consciously, the more the unconscious is learning to have these responses for me.
One example I have for you is the walking meditation I am doing... I have never walked so slowly and so confidently in my life. I take slow steps, feel my legs, my feet stretching into the ground. I feel my spine elongating and rising towards the sky. I notice views and noises that I have not noticed before. It is a short walk, a slow walk and quiet walk (away from traffic and bustle) my body doesn't need to be afraid. This response will be taken, in time, as I walk in other situations and I will be able to walk with steadiness, calmness and confidence further into my life.
So much of what I am writing appears to be about the mind changing the body, but this is about the brain changing the body. Please note that it is the unconscious brain that is making these decisions. Everyone with ME may have to work with the conscious mind on an intellectual level to recover, to change the brain-body. ME is a physical illness, with physical symptoms and it is the physical responses that need to be healed.
This can be a short or long process, an easy or tough process. Everyone is different and no one will go through the same journey towards recovery. Quite simply the body needs to be retaught how to do things and taught to do things without being afraid. Scream at the top of your voice, like Macaulay Culkin in the film Home Alone "I'm not afraid anymore" and you will notice a new confidence.
From there it is all about patience. I have not recovered yet, but I am well on the way. I feel different inside. My heart doesn't beat like a pig's when an unlikely situation occurs. I don't have so much cognitive exhaustion, as my head is clearing out the stress and worry. By practicing meditation, teaching the body to relax I am on the right path. It is almost like soothing a crying baby; when the symptoms appear, I notice them, ask them why they're here and realise something is needed to soothe those symptoms. It is the ability to step back and see the emotions, feelings, as a message from the body that helps the messages relearn. Yoga has taught me a lot of this, from all sides, meditation, mindfulness, postures.
Yes it is a pain to have to go through this process, yes it doesn't work all the time. I get confused and worried, tired and cross. But the more I notice and change the responses consciously, the more the unconscious is learning to have these responses for me.
One example I have for you is the walking meditation I am doing... I have never walked so slowly and so confidently in my life. I take slow steps, feel my legs, my feet stretching into the ground. I feel my spine elongating and rising towards the sky. I notice views and noises that I have not noticed before. It is a short walk, a slow walk and quiet walk (away from traffic and bustle) my body doesn't need to be afraid. This response will be taken, in time, as I walk in other situations and I will be able to walk with steadiness, calmness and confidence further into my life.
So much of what I am writing appears to be about the mind changing the body, but this is about the brain changing the body. Please note that it is the unconscious brain that is making these decisions. Everyone with ME may have to work with the conscious mind on an intellectual level to recover, to change the brain-body. ME is a physical illness, with physical symptoms and it is the physical responses that need to be healed.
Monday, 20 August 2012
What...
is ME?
ME is dysfunction of the autonomic nervous system, the sympathetic and stress responses and the immune system. All come at once.
What we need to recreate is the correct responses by all these unconscious physical systems. The root of the nervous system is held in the brain and the spine. From there it reaches out to every part of the body.
In ME the body's stress responses are not working, it is locked in Fight, Flight or Freeze. The parasympathetic responses control the ability to relax and heal. Without this the body cannot recover and learn to live healthily again.
The immune system, again lives in the spine and can be working on overdrive or in complete denial of any foreign bodies. Both these states causes the body physical stress and of course, when the body is ill, the cognitive stress comes along too!
ME is dysfunction of the autonomic nervous system, the sympathetic and stress responses and the immune system. All come at once.
What we need to recreate is the correct responses by all these unconscious physical systems. The root of the nervous system is held in the brain and the spine. From there it reaches out to every part of the body.
In ME the body's stress responses are not working, it is locked in Fight, Flight or Freeze. The parasympathetic responses control the ability to relax and heal. Without this the body cannot recover and learn to live healthily again.
The immune system, again lives in the spine and can be working on overdrive or in complete denial of any foreign bodies. Both these states causes the body physical stress and of course, when the body is ill, the cognitive stress comes along too!
Wednesday, 15 August 2012
Walking Through Treacle
A friend visited last week. I only met her recently, it was a meeting my husband had first (he does get out of the house more than I do!) he introduced her to my email address and we arranged to meet up for a cuppa. Our meeting was quite a surprise, I had only met one other person- coincidently this year too- who had experienced ME for as long as I. This new friend, I discovered, had been coping with ME for over 20 years too and since she had been at school. We have a lot in common there!
One thing she has introduced me too is her jokes and laughs about the condition. One thing she says is how having ME is like trying to walk through treacle! I suggested when I heard this that we might also try filling a swimming pool with custard instead of water!
It is good to be able to laugh about this. Last week when she visited with her young daughter a small collection of cartoons came along too. It was strange to remember all the jokes that had been thrown at me by the charity magazines when I had been so ill all those years ago.
So many of them show someone trying to cope in a work environment, or cooking at home, with bags under their eyes and eyelids failing to open. Walking with lead weights tied to the ankles (I still feel like this when I'm wearing my heavier trainers or winter boots!) and arms pulled down with bags of heavy shopping- the next picture shows that the person is actually only carrying an empty bag! Others suggest that sitting on the edge of the bed in the morning, going in the bathroom, then eating breakfast is so much effort that the day is achieved by then and bedtime arrives again after only an hour. They are so true! In some ways it is tear-inducing to see some of them. To think that there are pictures showing how we might look after hours of effort to leave the house, followed by pictures of how exhausted and painful we can feel.
Laughing at these cartoons can help sometimes, but most of them help us remember our darkest days and they will be insights of others, not our own interpretation of the illness. We also need to realise that we have to get past these images to find the truth. A lot of psychologists teach that imagining something is the first step to believing it, which then leads on to achieving the imagined and believed goal. Imagining something might be scary, then believing it is possible is actually immensely motivating. To put this into the context of ME, actively pushing and asking for physical therapy (I did small exercises every other day when I was doing nothing but lying in bed and I know they helped remove me from that position), nutritional assistance, pain relief from a regular massage or medication while it lasts, is working towards those goals. As relief begins to show itself, recovery is more believable. I started imagining recovery a long time ago, but it would be with despair. I was told constantly by doctors that recovery wasn't achievable. So where would I go from here!? Now I have a belief in recovery because by doing the things mentioned for myself, the goal of recovery doesn't seem so far away. I'm hoping, and believing, that by building up my energy so slowly and carefully, that this time recovery can become a reality. This is the point I have reached before and just gone headlong into fully energised activity. It wasn't the right thing to do, my body just wasn't ready for such a shock. I have to be aware of any signs my body gives me and listen to them mindfully.
I'm realising that I have to start leaving those cartoons behind and find my own reasons to laugh which are more in tune with a healthy life.
One thing she has introduced me too is her jokes and laughs about the condition. One thing she says is how having ME is like trying to walk through treacle! I suggested when I heard this that we might also try filling a swimming pool with custard instead of water!
It is good to be able to laugh about this. Last week when she visited with her young daughter a small collection of cartoons came along too. It was strange to remember all the jokes that had been thrown at me by the charity magazines when I had been so ill all those years ago.
So many of them show someone trying to cope in a work environment, or cooking at home, with bags under their eyes and eyelids failing to open. Walking with lead weights tied to the ankles (I still feel like this when I'm wearing my heavier trainers or winter boots!) and arms pulled down with bags of heavy shopping- the next picture shows that the person is actually only carrying an empty bag! Others suggest that sitting on the edge of the bed in the morning, going in the bathroom, then eating breakfast is so much effort that the day is achieved by then and bedtime arrives again after only an hour. They are so true! In some ways it is tear-inducing to see some of them. To think that there are pictures showing how we might look after hours of effort to leave the house, followed by pictures of how exhausted and painful we can feel.
Laughing at these cartoons can help sometimes, but most of them help us remember our darkest days and they will be insights of others, not our own interpretation of the illness. We also need to realise that we have to get past these images to find the truth. A lot of psychologists teach that imagining something is the first step to believing it, which then leads on to achieving the imagined and believed goal. Imagining something might be scary, then believing it is possible is actually immensely motivating. To put this into the context of ME, actively pushing and asking for physical therapy (I did small exercises every other day when I was doing nothing but lying in bed and I know they helped remove me from that position), nutritional assistance, pain relief from a regular massage or medication while it lasts, is working towards those goals. As relief begins to show itself, recovery is more believable. I started imagining recovery a long time ago, but it would be with despair. I was told constantly by doctors that recovery wasn't achievable. So where would I go from here!? Now I have a belief in recovery because by doing the things mentioned for myself, the goal of recovery doesn't seem so far away. I'm hoping, and believing, that by building up my energy so slowly and carefully, that this time recovery can become a reality. This is the point I have reached before and just gone headlong into fully energised activity. It wasn't the right thing to do, my body just wasn't ready for such a shock. I have to be aware of any signs my body gives me and listen to them mindfully.
I'm realising that I have to start leaving those cartoons behind and find my own reasons to laugh which are more in tune with a healthy life.
Sunday, 12 August 2012
Detox
What is happening those few days when exercise just doesn't come and digestion is corrupt. It can feel like a flu, a stomach bug, a total confusion. Without the muscle aches from before it has been suggested to me that it could be detox.
My body has been keeping toxins like its hoarding for an Armageddon. Where do they go? As far as my logic takes me the 'dark side' is sitting in the crevices, the shadows, waiting for an opportunity to attack.
My body hasn't gone so far as some. I'm not ready for that yet. In the final stages of recovery. where nearer normal activity is achieved, I know some patients who have had a ridiculous number of cod and flu bugs within a matter of months. The ME patient is likely to have either an over active immune system or an under active immune system. In an over active immune system- like mine- my friends will have colds, flus, my husband will complain about hacking coughs and the dreadful bugs that 'go round' at work, he brings the germs home and I catch nothing. Or so I think. I noticed last year when it was pointed out to me that an immune system in dysfunction could go into overdrive, that my colds and flus were actually present but were very mild. I had only thought that a sore throat was a symptom of ME. But that I realised that I would have this for a while and then it would go away, I might have blocked sinuses for a couple of days and then nothing. It was the over active immune system that sent me to bed for the following two weeks that gave me the clues. It was fighting so hard I had no energy to do anything else. My colds had so few symptoms other than extreme exhaustion.
A friend of mine who also has ME must have an under-active immune system- she has colds and flus like they are ganging up and persecuting her for some unknown reason.
As I have been so exhausted and unable to move when these viruses and bacterial infections hit me they sit and wait, in the muscles, body fluids- in some ME research, proteins have been found in the spinal fluid which distinguish ME patients from Lymes disease and healthy controls.(link)
All these cold and flu bugs are waiting for the body to deal with them in the proper way. For now it is the smaller every day toxins that the body has found it hard to eliminate. I am no doctor or cellular biologist, so wont attempt to explain it, but I do know that as my energy channels open up, for example the ability for the arms and hands, the legs and feet to have a more regulated temperature and a more normal blood pressure, then I will be clearing out these spaces and will notice the muscles feeling less tense as I take a day's rest.
I mustn't be so afraid of a little exhaustion as I have been before. My legs don't collapse beneath me, I just fancy a sleep on the sofa during the day, or a quieter day in general. As long as I continue to be aware of what my body needs I will be progressing well.
My body has been keeping toxins like its hoarding for an Armageddon. Where do they go? As far as my logic takes me the 'dark side' is sitting in the crevices, the shadows, waiting for an opportunity to attack.
My body hasn't gone so far as some. I'm not ready for that yet. In the final stages of recovery. where nearer normal activity is achieved, I know some patients who have had a ridiculous number of cod and flu bugs within a matter of months. The ME patient is likely to have either an over active immune system or an under active immune system. In an over active immune system- like mine- my friends will have colds, flus, my husband will complain about hacking coughs and the dreadful bugs that 'go round' at work, he brings the germs home and I catch nothing. Or so I think. I noticed last year when it was pointed out to me that an immune system in dysfunction could go into overdrive, that my colds and flus were actually present but were very mild. I had only thought that a sore throat was a symptom of ME. But that I realised that I would have this for a while and then it would go away, I might have blocked sinuses for a couple of days and then nothing. It was the over active immune system that sent me to bed for the following two weeks that gave me the clues. It was fighting so hard I had no energy to do anything else. My colds had so few symptoms other than extreme exhaustion.
A friend of mine who also has ME must have an under-active immune system- she has colds and flus like they are ganging up and persecuting her for some unknown reason.
As I have been so exhausted and unable to move when these viruses and bacterial infections hit me they sit and wait, in the muscles, body fluids- in some ME research, proteins have been found in the spinal fluid which distinguish ME patients from Lymes disease and healthy controls.(link)
All these cold and flu bugs are waiting for the body to deal with them in the proper way. For now it is the smaller every day toxins that the body has found it hard to eliminate. I am no doctor or cellular biologist, so wont attempt to explain it, but I do know that as my energy channels open up, for example the ability for the arms and hands, the legs and feet to have a more regulated temperature and a more normal blood pressure, then I will be clearing out these spaces and will notice the muscles feeling less tense as I take a day's rest.
I mustn't be so afraid of a little exhaustion as I have been before. My legs don't collapse beneath me, I just fancy a sleep on the sofa during the day, or a quieter day in general. As long as I continue to be aware of what my body needs I will be progressing well.
Saturday, 11 August 2012
The ME Community
I joined a couple of ME groups after I'd been ill for a few years. They gave me some information, a few jokes and cartoons about having ME and also offered a few contacts which might help; a video rental and audio books by post company, for example.
Overall I found them, in those days, to wallow more in the fact of being ill. Not particularly helpful on trying to get better.
I want to suggest a few metaphors to you...
Imagine you are building a house. First job is to clear the land, maybe demolish a previous building or clear an area of vegetation. This would represent the beginning of the illness, the original crash, taking away the body's health and realising the life you had before has to be cleared of unnecessary activities.
Secondly you talk to an architect, check the designs and build the foundations. So talk to the doctor, find a diagnosis and try some options through the doctor's recommended treatments. Join an ME group or read some charity websites and relevant books and realise the vast quantities of options that are out there. So utilise their resouces withou t clingin to them, this is your recovery with your body.
Third job is to begin the process of the exterior and load-bearing walls.You need a planning officer, a project manager to guide your progress and the job starts quite well. You follow your doctor's advice, or begin with an ME specialist, maybe also pain therapists and nutritionists, so the first steps to understanding the condition and initiating recovery have started.
Fourth job will include the roof and windows, also interior walls. The design can be changed at this point with inside walls maybe taken out or added. Weather might come along which prevent the roof going on for a few weeks or months. Little set backs can be disappointing and will lengthen the build time. You probably get the idea from here that treatment strategies might be working brilliantly and the more expertise you have guiding you the more likely you are to be able to choose the best options from the beginning. However no matter what is predicted little things, like a sudden virus, a family crisis, anything which will take away your energy from the treatment process, can delay the recovery. Just know that the building will be built and recovery will happen. At this point you might dip in and out of the ME charities still looking for advice sometimes, but realise that you have to choose your pages wisely- you're not at the onset of the illness anymore. The stages of illness are paramount. If you have had a storm come along and needed to rebuild, the charities and local groups might be helpful, but also your doctor and ME specialists who know you best (and most importantly you!) will guide any rebuild that needs to happen.
During the fifth stage, once the roof and windows are in and the interior walls are set in place the exterior builders can go home. The same project manager will continue the process, guided by your opinions and new experts are brought in to choose interior designs. Wallpaper, carpets, plastering, kitchen and bathroom fittings and any permanent features in the house like electrics and heating which haven't been set inside the interior walls. So the process continues. In some ways this is the most important. Having prepared the canvas by removing as much pain as possible and any more of the more rigorous symptoms more energy will have been achieved. So confidence is built, maybe advice is taken from yoga teachers or general life coaches who help people through the transition from chronic illness to better health and re-entering day-to-day life. Habits and activities need to be set in place so the illness doesn't relapse as the recovery is continued.
Finally the furniture is chosen and garden is planted up to create a home rather than a house for many years pleasure. This takes time and will be changed as the months and years go by. In recovery new ways of life are chosen. Meditation and yoga might be continued for a lifetime, a more conscious way of living, in tune with the body and aware of its fitting in with the world.
The length of time this whole process will take is not set in stone, but as with house building the more firm the foundations, even if they have to be rebuilt a couple of times, the stronger and more secure the future of the final build.
Overall I found them, in those days, to wallow more in the fact of being ill. Not particularly helpful on trying to get better.
I want to suggest a few metaphors to you...
Imagine you are building a house. First job is to clear the land, maybe demolish a previous building or clear an area of vegetation. This would represent the beginning of the illness, the original crash, taking away the body's health and realising the life you had before has to be cleared of unnecessary activities.
Secondly you talk to an architect, check the designs and build the foundations. So talk to the doctor, find a diagnosis and try some options through the doctor's recommended treatments. Join an ME group or read some charity websites and relevant books and realise the vast quantities of options that are out there. So utilise their resouces withou t clingin to them, this is your recovery with your body.
Third job is to begin the process of the exterior and load-bearing walls.You need a planning officer, a project manager to guide your progress and the job starts quite well. You follow your doctor's advice, or begin with an ME specialist, maybe also pain therapists and nutritionists, so the first steps to understanding the condition and initiating recovery have started.
Fourth job will include the roof and windows, also interior walls. The design can be changed at this point with inside walls maybe taken out or added. Weather might come along which prevent the roof going on for a few weeks or months. Little set backs can be disappointing and will lengthen the build time. You probably get the idea from here that treatment strategies might be working brilliantly and the more expertise you have guiding you the more likely you are to be able to choose the best options from the beginning. However no matter what is predicted little things, like a sudden virus, a family crisis, anything which will take away your energy from the treatment process, can delay the recovery. Just know that the building will be built and recovery will happen. At this point you might dip in and out of the ME charities still looking for advice sometimes, but realise that you have to choose your pages wisely- you're not at the onset of the illness anymore. The stages of illness are paramount. If you have had a storm come along and needed to rebuild, the charities and local groups might be helpful, but also your doctor and ME specialists who know you best (and most importantly you!) will guide any rebuild that needs to happen.
During the fifth stage, once the roof and windows are in and the interior walls are set in place the exterior builders can go home. The same project manager will continue the process, guided by your opinions and new experts are brought in to choose interior designs. Wallpaper, carpets, plastering, kitchen and bathroom fittings and any permanent features in the house like electrics and heating which haven't been set inside the interior walls. So the process continues. In some ways this is the most important. Having prepared the canvas by removing as much pain as possible and any more of the more rigorous symptoms more energy will have been achieved. So confidence is built, maybe advice is taken from yoga teachers or general life coaches who help people through the transition from chronic illness to better health and re-entering day-to-day life. Habits and activities need to be set in place so the illness doesn't relapse as the recovery is continued.
Finally the furniture is chosen and garden is planted up to create a home rather than a house for many years pleasure. This takes time and will be changed as the months and years go by. In recovery new ways of life are chosen. Meditation and yoga might be continued for a lifetime, a more conscious way of living, in tune with the body and aware of its fitting in with the world.
The length of time this whole process will take is not set in stone, but as with house building the more firm the foundations, even if they have to be rebuilt a couple of times, the stronger and more secure the future of the final build.
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!
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.
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!
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.
Thursday, 28 June 2012
The Ladder of Health
Yes, a ladder.
I started using this analogy last year and it has grown into something quite profound. I want to share it with you.
I crashed two years ago. I went to bed. I had no choice. I could barely move some days. My body gave up, but I didn't!
I listened and said, "OK, you win" I'll give you a few weeks, check some blood tests and see what happens. It had been starting to flail in January, I had actually gone to my doctor and complained of feeling more tired! Not just tired, more tired! There is a difference, as I am sure many of you will know.
So at this point if I had the ladder I would have said to myself,
"do you need to sit on your current step for a while or go down a step?"
I didn't realise that I needed to go down a step, off-load some of my responsibilities and give myself a break.
By the summer I had been falling down the steps, without realising it. Not really listening... pushing, doing what I expected myself to do; keep going, strive and you will succeed. I wanted to have a slightly interesting life. I accepted I was ill, just wanted a little piece of the social cake- a slice of life outside the home. I was careful, made sacrifices left, right and centre, but did not purposefully take that step back by my own choosing.
So by doing all this, my body made the decision. It pushed me off the ladder and told me to sit on the floor for a while. I kept getting up and it kept pushing me back off, for about 18 months in cycles of 3-6 months, I was constantly doing and flailing, doing and flailing. Stepping up the ladder too soon, only to fall back onto the floor.
Last November something happened. OH and I decided that we had to come first. Our needs above everyone else's and for the time being most of my needs over his.
I stepped back onto the floor and happily sat down. What a relief that was. To make the decision myself!
Christmas was the best we had ever had. I was ill- yes I was ill. We were smiling to jaw-breaking standards. Family and friends who didn't understand were laughably annoying. But friends and family who did understand suddenly came out of the wood-work and switched on the light. We had support we didn't know was there.
Even Olympic athletes have to step back occasionally; a ham-string injury or twisted ankle might take them out of full capacity training for a couple of weeks and who is likely to ever reach the top of the ladder? The idea is not to aim for the top, but to reach your comfortable step, sit down happily and be yourself. I reckon I'm on the first step, I've tested the second step a few times in the last couple of months and know it's not quite strong enough for me yet. I will wait until it is, as the last thing I want is to be pushed back to the floor and have to do time there again.
I started using this analogy last year and it has grown into something quite profound. I want to share it with you.
I crashed two years ago. I went to bed. I had no choice. I could barely move some days. My body gave up, but I didn't!
I listened and said, "OK, you win" I'll give you a few weeks, check some blood tests and see what happens. It had been starting to flail in January, I had actually gone to my doctor and complained of feeling more tired! Not just tired, more tired! There is a difference, as I am sure many of you will know.
So at this point if I had the ladder I would have said to myself,
"do you need to sit on your current step for a while or go down a step?"
I didn't realise that I needed to go down a step, off-load some of my responsibilities and give myself a break.
By the summer I had been falling down the steps, without realising it. Not really listening... pushing, doing what I expected myself to do; keep going, strive and you will succeed. I wanted to have a slightly interesting life. I accepted I was ill, just wanted a little piece of the social cake- a slice of life outside the home. I was careful, made sacrifices left, right and centre, but did not purposefully take that step back by my own choosing.
So by doing all this, my body made the decision. It pushed me off the ladder and told me to sit on the floor for a while. I kept getting up and it kept pushing me back off, for about 18 months in cycles of 3-6 months, I was constantly doing and flailing, doing and flailing. Stepping up the ladder too soon, only to fall back onto the floor.
Last November something happened. OH and I decided that we had to come first. Our needs above everyone else's and for the time being most of my needs over his.
I stepped back onto the floor and happily sat down. What a relief that was. To make the decision myself!
Christmas was the best we had ever had. I was ill- yes I was ill. We were smiling to jaw-breaking standards. Family and friends who didn't understand were laughably annoying. But friends and family who did understand suddenly came out of the wood-work and switched on the light. We had support we didn't know was there.
Even Olympic athletes have to step back occasionally; a ham-string injury or twisted ankle might take them out of full capacity training for a couple of weeks and who is likely to ever reach the top of the ladder? The idea is not to aim for the top, but to reach your comfortable step, sit down happily and be yourself. I reckon I'm on the first step, I've tested the second step a few times in the last couple of months and know it's not quite strong enough for me yet. I will wait until it is, as the last thing I want is to be pushed back to the floor and have to do time there again.
Thursday, 21 June 2012
Webinar News
Last night's webinar was, in part, about anxiety. It didn't all fit in with my ideas but was useful in some ways. I take notes through it when something might be helpful to remember, but I have my own take on this subject:
Anxiety in ME patients can be a big thing. Just the tiredness; never ending lethargy, malaise, jelly-like legs, all over physical weakness and cognitive exhaustion from the smallest stimulation, is scary enough. Who on Earth would ever imagine the body would be prepared to act like this? We're humans, prepared to fight, flight or freeze with intention at any threat. Could an ME patient do any of that? No. Being Scared, Frightened, Confused and Anxious is the obvious result. When I had so many symptoms, I needed toes and fingers to count them, it was mind-boggling. My seizures were especially stress-inducing as so many things could set them off, I was on the look out for triggers and how to avoid them constantly. The idea of coping with it calmly is practical: taking a methodical approach and dealing with each flare-up as and when it happens is fine, when two or three appear at once, it's difficult. When you have so many it's confusing and therefore causing headaches and anxiety, the idea goes 'out-the-window'! That's when a deep breath and a listening ear is necessary. And the big thing about this illness is realising when you need help. Be that from friends, family members or even a paid carer or counsellor. The faster you can offload symptoms and worries by talking about them or finding solutions the better your chances of less anxiety.
My anxiety is mainly about what I do when and where and also about a day when I wake up with a feeling of exhaustion before I have even lifted my head from the pillow. I have very little anxiety now, mostly just on bad days as my unconscious brain seems to think it is back in the old days- I have to keep reminding it that actually it is just an off day and it won't last.
When recovery begins it can be really scary to find yourself physically tired from activity. Tiredness has always been a bad thing. I have been getting used to physical tiredness; realising how lovely it is to put my head on the pillow at night and fall asleep because I am tired at the right time! Yesterday I was cautious as I was still lacking in energy, feeling listless, and spent the afternoon in the garden resting with music playing quietly next to me. When I fell into bed last night it took longer to fall asleep, I also woke up at about 5am and was tossing and turning for an hour.
Friends can be so useful in this scenario- distraction is a great way to reduce the stress. Items through the post can be distracting, not because it's a birthday or special occasion, but because you can't be there on the doorstep and want to make an effort. It can be as small as a joke on a postcard or as big as an audio book or DVD set from Amazon as a gift, or from your own collection on loan. Perfumed bath foam or soap is a nice idea but usually not practical as the skin can become so sensitive. Just a phone call, or message left on the answer phone, a text or an email with a funny YouTube link is a distraction and something that can distract over and over again.
One of the best books I ever found to help deal with the stress is How To Be Sick by Toni Bernhard. It helps the mind and body come to terms with the situation and the reality becomes more peaceful. A half-way-house has to be found at the beginning of ME (or for longterm sufferers like myself in the middle of nowhere when the right tools are in situ.). Sitting on the bottom rung of the ladder for a few months to find firm ground is a great stance to take. Once symptoms have abated, which might take a long time, the climbing can slowly begin more securely. But if the heart and head are starting from the right place and peace has been made with the situation, then sickness can become recovery.
Anxiety in ME patients can be a big thing. Just the tiredness; never ending lethargy, malaise, jelly-like legs, all over physical weakness and cognitive exhaustion from the smallest stimulation, is scary enough. Who on Earth would ever imagine the body would be prepared to act like this? We're humans, prepared to fight, flight or freeze with intention at any threat. Could an ME patient do any of that? No. Being Scared, Frightened, Confused and Anxious is the obvious result. When I had so many symptoms, I needed toes and fingers to count them, it was mind-boggling. My seizures were especially stress-inducing as so many things could set them off, I was on the look out for triggers and how to avoid them constantly. The idea of coping with it calmly is practical: taking a methodical approach and dealing with each flare-up as and when it happens is fine, when two or three appear at once, it's difficult. When you have so many it's confusing and therefore causing headaches and anxiety, the idea goes 'out-the-window'! That's when a deep breath and a listening ear is necessary. And the big thing about this illness is realising when you need help. Be that from friends, family members or even a paid carer or counsellor. The faster you can offload symptoms and worries by talking about them or finding solutions the better your chances of less anxiety.
My anxiety is mainly about what I do when and where and also about a day when I wake up with a feeling of exhaustion before I have even lifted my head from the pillow. I have very little anxiety now, mostly just on bad days as my unconscious brain seems to think it is back in the old days- I have to keep reminding it that actually it is just an off day and it won't last.
When recovery begins it can be really scary to find yourself physically tired from activity. Tiredness has always been a bad thing. I have been getting used to physical tiredness; realising how lovely it is to put my head on the pillow at night and fall asleep because I am tired at the right time! Yesterday I was cautious as I was still lacking in energy, feeling listless, and spent the afternoon in the garden resting with music playing quietly next to me. When I fell into bed last night it took longer to fall asleep, I also woke up at about 5am and was tossing and turning for an hour.
Friends can be so useful in this scenario- distraction is a great way to reduce the stress. Items through the post can be distracting, not because it's a birthday or special occasion, but because you can't be there on the doorstep and want to make an effort. It can be as small as a joke on a postcard or as big as an audio book or DVD set from Amazon as a gift, or from your own collection on loan. Perfumed bath foam or soap is a nice idea but usually not practical as the skin can become so sensitive. Just a phone call, or message left on the answer phone, a text or an email with a funny YouTube link is a distraction and something that can distract over and over again.
One of the best books I ever found to help deal with the stress is How To Be Sick by Toni Bernhard. It helps the mind and body come to terms with the situation and the reality becomes more peaceful. A half-way-house has to be found at the beginning of ME (or for longterm sufferers like myself in the middle of nowhere when the right tools are in situ.). Sitting on the bottom rung of the ladder for a few months to find firm ground is a great stance to take. Once symptoms have abated, which might take a long time, the climbing can slowly begin more securely. But if the heart and head are starting from the right place and peace has been made with the situation, then sickness can become recovery.
Thursday, 14 June 2012
My Day Continued
5pm woke five minutes ago from a dozy, sleepy afternoon, drifting in and out of unconsciousness with The Chamber Of Secrets continuing beside me, keeping me sane.
8.30pm woke at 8pm after more drifting in and out of The Chamber Of Secrets. At 5.30pm I began feeling very strange, mixture of dizziness-without the vertigo, nausea and foggy head syndrome(yes, I just made that one up!) still not feeling great, so sitting in bed, continuing to listen to Stephen Fry and obviously typing! I try not to sleep after 6pm unless something is desperately wrong as I will usually wake by 10pm and then loose my sleep routine for the night. So bed it was and shall be for this evening. Unlike usual I am not watching TV while sitting/lying here or trying to do any reading or knitting.
Next Day
So had a good night's sleep, only punctuated by one of my hot water bottles bursting at about 9.30pm. I was saturated, as was the main sheet and mattress cover. Action stations worked quite well and the bed was half-changed, as was I, within about 10 minutes. I then quickly went online and ordered three new ones from Amazon. They are particularly budget friendly! at this time of year and we always need a stash of spare ones for incidents such as these. (failed last night!)
It is interesting to document a day such as this. In the week of an ME patient, even one who is recovering, there are days of calmness and days of confusion. Yesterday was unusual in that I slept in the evening, but not unheard of. I usually have an afternoon sleep 4-5 days a week, of an hour or up to three hours. Otherwise have an inactive resting morning or afternoon; I'm lucky in that sometimes I can choose if a friend or appointment requires the day to be flipped.
Asking why days like yesterday happen is usually not a good idea. Analysing and questioning such things can be overly exhausting. Maybe I ate something that didn't agree, maybe I slept in an odd position in the afternoon, maybe a yoga pose was too much, maybe I lifted something at the weekend that is just starting to show itself as an unwise move. It could even be something completely beyond my control- likely candidate hay fever, as my eyes are sensitive and my sinuses have been aching too- washing my hair might help and changing the bed clothes again. I am unlikely to know. If I keep listening to my body and follow my best options as well as learning a little bit every week if it feels right, then I will be doing my best. "do your best, leave the rest!"
8.30pm woke at 8pm after more drifting in and out of The Chamber Of Secrets. At 5.30pm I began feeling very strange, mixture of dizziness-without the vertigo, nausea and foggy head syndrome(yes, I just made that one up!) still not feeling great, so sitting in bed, continuing to listen to Stephen Fry and obviously typing! I try not to sleep after 6pm unless something is desperately wrong as I will usually wake by 10pm and then loose my sleep routine for the night. So bed it was and shall be for this evening. Unlike usual I am not watching TV while sitting/lying here or trying to do any reading or knitting.
Next Day
So had a good night's sleep, only punctuated by one of my hot water bottles bursting at about 9.30pm. I was saturated, as was the main sheet and mattress cover. Action stations worked quite well and the bed was half-changed, as was I, within about 10 minutes. I then quickly went online and ordered three new ones from Amazon. They are particularly budget friendly! at this time of year and we always need a stash of spare ones for incidents such as these. (failed last night!)
It is interesting to document a day such as this. In the week of an ME patient, even one who is recovering, there are days of calmness and days of confusion. Yesterday was unusual in that I slept in the evening, but not unheard of. I usually have an afternoon sleep 4-5 days a week, of an hour or up to three hours. Otherwise have an inactive resting morning or afternoon; I'm lucky in that sometimes I can choose if a friend or appointment requires the day to be flipped.
Asking why days like yesterday happen is usually not a good idea. Analysing and questioning such things can be overly exhausting. Maybe I ate something that didn't agree, maybe I slept in an odd position in the afternoon, maybe a yoga pose was too much, maybe I lifted something at the weekend that is just starting to show itself as an unwise move. It could even be something completely beyond my control- likely candidate hay fever, as my eyes are sensitive and my sinuses have been aching too- washing my hair might help and changing the bed clothes again. I am unlikely to know. If I keep listening to my body and follow my best options as well as learning a little bit every week if it feels right, then I will be doing my best. "do your best, leave the rest!"
Tuesday, 12 June 2012
Yoga Marathon
I mentioned that it was my intention on Friday morning to attempt a yoga mini-retreat. Yes I intended and I succeeded.
Don't get me wrong. I am not talking about 3 hours of American-style aerobic non-stop yoga, without pause for breath and sweat dripping off me in bucket-loads. This was calm, focused, easy, beginners yoga, with poses and counter-poses, meditations and breathing exercises. As I wrote to my husband in an email at lunchtime Friday; "Completed a three hour yoga marathon! Without one breathless, ouch or creaking moment!"
What really helped me in this was something I learned during the week from a study I was reading, by Dr Nancy Klimas. Dr Klimas runs an ME/CFS treatment clinic in Miami and has completed a lot of research on the subject, at the University of Miami. Her studies have found that the crucial thing about doing activity, and doing too much activity in ME patients is the way that the breathing and heartbeat are working together. As soon as aerobic activity becomes anaerobic activity (which can be in as few as 2-3 minutes) the cells in an ME patient need to search for more energy and start using reserves which simply aren't there. Only by limiting aerobic activity, to that short amount of time and interspersing it with equal amounts of time spent resting, can the cells regenerate energy, without seeing the desperate daily or hourly crashes and exhaustion. Until I see a vast improvement in my energy levels, which will suggest I can last longer in aerobic activity before moving into anaerobic activity, will I let myself get breathless without checking in and slowing down or resting.
This is probably the main reason that so many patients have recovered from ME by practising Yoga and slowly increasing their stability. If you can breathe you can practise Yoga. On a bad day, I know I can lie in bed and practise breathing and also meditate.(that sounds daft-I do know how to breathe!) On better days I can hold poses and stretch my limbs out to encourage flexibility and slowly iron out all those creaks and aching joints that still haunt me. I enjoyed Friday's mini-retreat and until I can make it to a regular class with a hands on instructor to guide me through some of the more complicated poses, I intend to continue as I am with my new accessible technology-wise classes and a friendly Yoga website to answer any questions should I have them.
I have been using these two wonderful websites, with YouTube and iTunes podcast links, and both have answered any questions whenever I have asked
Yogaempowered (link)
And Namaste Yoga (link)
Don't get me wrong. I am not talking about 3 hours of American-style aerobic non-stop yoga, without pause for breath and sweat dripping off me in bucket-loads. This was calm, focused, easy, beginners yoga, with poses and counter-poses, meditations and breathing exercises. As I wrote to my husband in an email at lunchtime Friday; "Completed a three hour yoga marathon! Without one breathless, ouch or creaking moment!"
What really helped me in this was something I learned during the week from a study I was reading, by Dr Nancy Klimas. Dr Klimas runs an ME/CFS treatment clinic in Miami and has completed a lot of research on the subject, at the University of Miami. Her studies have found that the crucial thing about doing activity, and doing too much activity in ME patients is the way that the breathing and heartbeat are working together. As soon as aerobic activity becomes anaerobic activity (which can be in as few as 2-3 minutes) the cells in an ME patient need to search for more energy and start using reserves which simply aren't there. Only by limiting aerobic activity, to that short amount of time and interspersing it with equal amounts of time spent resting, can the cells regenerate energy, without seeing the desperate daily or hourly crashes and exhaustion. Until I see a vast improvement in my energy levels, which will suggest I can last longer in aerobic activity before moving into anaerobic activity, will I let myself get breathless without checking in and slowing down or resting.
This is probably the main reason that so many patients have recovered from ME by practising Yoga and slowly increasing their stability. If you can breathe you can practise Yoga. On a bad day, I know I can lie in bed and practise breathing and also meditate.(that sounds daft-I do know how to breathe!) On better days I can hold poses and stretch my limbs out to encourage flexibility and slowly iron out all those creaks and aching joints that still haunt me. I enjoyed Friday's mini-retreat and until I can make it to a regular class with a hands on instructor to guide me through some of the more complicated poses, I intend to continue as I am with my new accessible technology-wise classes and a friendly Yoga website to answer any questions should I have them.
I have been using these two wonderful websites, with YouTube and iTunes podcast links, and both have answered any questions whenever I have asked
Yogaempowered (link)
And Namaste Yoga (link)
Monday, 11 June 2012
Time Shift
Three Months ago...
I have been diagnosed with ME since I was 12 and Epilepsy since I was 25 (had seizures since age of 15)
Why am I finding it so difficult, even now, to be tired? I seem to have motivation to do stuff but get so frustrated when I can't do what I want to do. Did too much last weekend, went out with my husband, with wheelchair, and on Thursday, Friday saw a couple of friends....and made up for it this week.
To give you an idea, I do tick charts(some might know them as daily spoons) and used 24, 23,23,22 Thursday to Sunday. Then Monday to Wednesday only managed 13,11, 15 but boy was I ill; my legs were like jelly just moving around the house, I was asleep in the afternoons and became confused when I was hungry. I find it so difficult to say no, to decide against leaving the house. Why does such a small shift in activity mean so much?
I do so little, use an iPad instead of sitting at computer desk, sit in bed most of the day with hot water bottles, see a friend for an hour or so once or twice a week and my husband takes me out a couple of times over Friday-Sunday when he is home, so I can have a change of view and get a nice coffee!
I feel so useless. Even my hobby, knitting, has been cut back to almost nothing in the last couple of months as I can't manage the concentration and physical energy. Why is it so difficult? Is there anything I can do to help keep myself on the straight and narrow
Anyone with some wise words out there?
Today...
It seems so strange that such a big shift can happen in such a short time. I still have days when I am tired, when the ground appears to be dragging me down. I think the difference now is that I understand the physiological reasons for it all happening. The theory behind the illness and the research and proof behind the illness. When the gravitational pull of the Earth seems stronger than usual I know my body is saying "I need extra time to heal today, help me find it" and I do. Frustration can taken over sometimes, but I feel confident that most of the groundwork is in place and compensations can be made on a daily basis. I know now that recovery is a true possibility and I must have the courage and strength to find it when it wants to be found.
I have been diagnosed with ME since I was 12 and Epilepsy since I was 25 (had seizures since age of 15)
Why am I finding it so difficult, even now, to be tired? I seem to have motivation to do stuff but get so frustrated when I can't do what I want to do. Did too much last weekend, went out with my husband, with wheelchair, and on Thursday, Friday saw a couple of friends....and made up for it this week.
To give you an idea, I do tick charts(some might know them as daily spoons) and used 24, 23,23,22 Thursday to Sunday. Then Monday to Wednesday only managed 13,11, 15 but boy was I ill; my legs were like jelly just moving around the house, I was asleep in the afternoons and became confused when I was hungry. I find it so difficult to say no, to decide against leaving the house. Why does such a small shift in activity mean so much?
I do so little, use an iPad instead of sitting at computer desk, sit in bed most of the day with hot water bottles, see a friend for an hour or so once or twice a week and my husband takes me out a couple of times over Friday-Sunday when he is home, so I can have a change of view and get a nice coffee!
I feel so useless. Even my hobby, knitting, has been cut back to almost nothing in the last couple of months as I can't manage the concentration and physical energy. Why is it so difficult? Is there anything I can do to help keep myself on the straight and narrow
Anyone with some wise words out there?
Today...
It seems so strange that such a big shift can happen in such a short time. I still have days when I am tired, when the ground appears to be dragging me down. I think the difference now is that I understand the physiological reasons for it all happening. The theory behind the illness and the research and proof behind the illness. When the gravitational pull of the Earth seems stronger than usual I know my body is saying "I need extra time to heal today, help me find it" and I do. Frustration can taken over sometimes, but I feel confident that most of the groundwork is in place and compensations can be made on a daily basis. I know now that recovery is a true possibility and I must have the courage and strength to find it when it wants to be found.
Sunday, 10 June 2012
The Daily Experiment
It has been a strange week. Good week. Feeling like walking on egg shells constantly. Every day has brought something new, I have been tentative and brave accordingly. A new rule with my husband is that he will never ask me if I want the wheelchair he will always presume that I do; I can make the decision without any pressure. I did a bit of walking last weekend, again no traffic and very few people so I did quite well and judged it well with rests.
I was still feeling, last weekend, the impact from the previous week's hot weather and took a lot of rest time to manage that. My nights were pretty bad, with vivid, running from a tiger, dreams. So waking up for most of the last week has been a relief, but not really akin to a good start to the day. In that respect I have struggled with routines too; barely in the mood to drag myself out of bed, let alone think about following any kind of plan for the day. The Bank Holidays (and whenever OH is at home on a week day) seemed to totally mess me up. It was a struggle everyday, but I managed to convince myself to just float along, enjoying my extra support over that longer weekend and then a chance to have my own space Wednesday and Thursday.
I achieved that 10 minutes in the garden on Wednesday, then made myself a sugar-free cake with carob chips. On Thursday I made biscuits for my husband to take to work, really sugary so will avoid them myself. Both days I slept in the afternoon and managed a short yoga routine and meditations.
On a weekly basis I have been attending live 'webinars' with the founder of the recovery programme I have been using. This week's was about meditation and it really encouraged what I had been finding in the previous days. When I had woken with so little focus and motivation all I could find in meditation was a crazy thought-filled head, going nowhere fast. All I had to do was lie on and let it be busy, prove to the head that the body wasn't going to get involved. We also touched on yoga as an exercise as well as a meditation option. I was very much encouraged to investigate this even more and did a bit of searching for some more DVDs or websites to help me. Finding and getting to a quiet, gentle, beginners class with laying down encouraged is not something I desperately want to attempt. I want something aimed at the fatigued, those in recuperation, who don't do much standing or walking and creak when lifting a tray of biscuits from the oven!
So I found something. A great company in Canada, which has sponsorship and takes donations to put free classes online. They are on iTunes and YouTube, under the umbrella of Namaste Yoga and Dr Melissa West. Three new videos have come out in the last week aimed at absolute beginners and in the back catalogue I have found various breathing and meditation based lessons too. Each session is about an hour, so having done lessons with a teacher and practised a lot more by myself, I was sure they would suit me and I could cope without a personal instructor. Realising how difficult I had found it on previous mornings, I set myself a challenge on Thursday evening; to wake up Friday morning and have a smoothie for breakfast, followed by a morning mini yoga retreat in my living room. I did it. With lying, breathing exercises, meditations and about two half-hours of gentle poses, I did almost three hours with the help of two of these new videos and felt much better as a result.
So each day is a challenge, I just have to keep finding new ways of creatively dealing with them as they try to bite me right back!
I was still feeling, last weekend, the impact from the previous week's hot weather and took a lot of rest time to manage that. My nights were pretty bad, with vivid, running from a tiger, dreams. So waking up for most of the last week has been a relief, but not really akin to a good start to the day. In that respect I have struggled with routines too; barely in the mood to drag myself out of bed, let alone think about following any kind of plan for the day. The Bank Holidays (and whenever OH is at home on a week day) seemed to totally mess me up. It was a struggle everyday, but I managed to convince myself to just float along, enjoying my extra support over that longer weekend and then a chance to have my own space Wednesday and Thursday.
I achieved that 10 minutes in the garden on Wednesday, then made myself a sugar-free cake with carob chips. On Thursday I made biscuits for my husband to take to work, really sugary so will avoid them myself. Both days I slept in the afternoon and managed a short yoga routine and meditations.
On a weekly basis I have been attending live 'webinars' with the founder of the recovery programme I have been using. This week's was about meditation and it really encouraged what I had been finding in the previous days. When I had woken with so little focus and motivation all I could find in meditation was a crazy thought-filled head, going nowhere fast. All I had to do was lie on and let it be busy, prove to the head that the body wasn't going to get involved. We also touched on yoga as an exercise as well as a meditation option. I was very much encouraged to investigate this even more and did a bit of searching for some more DVDs or websites to help me. Finding and getting to a quiet, gentle, beginners class with laying down encouraged is not something I desperately want to attempt. I want something aimed at the fatigued, those in recuperation, who don't do much standing or walking and creak when lifting a tray of biscuits from the oven!
So I found something. A great company in Canada, which has sponsorship and takes donations to put free classes online. They are on iTunes and YouTube, under the umbrella of Namaste Yoga and Dr Melissa West. Three new videos have come out in the last week aimed at absolute beginners and in the back catalogue I have found various breathing and meditation based lessons too. Each session is about an hour, so having done lessons with a teacher and practised a lot more by myself, I was sure they would suit me and I could cope without a personal instructor. Realising how difficult I had found it on previous mornings, I set myself a challenge on Thursday evening; to wake up Friday morning and have a smoothie for breakfast, followed by a morning mini yoga retreat in my living room. I did it. With lying, breathing exercises, meditations and about two half-hours of gentle poses, I did almost three hours with the help of two of these new videos and felt much better as a result.
So each day is a challenge, I just have to keep finding new ways of creatively dealing with them as they try to bite me right back!
Monday, 4 June 2012
What Is ME?
This is a question that can have a very simple answer or a very long winded answer. The simple answer is that ME, Myalgic Encephalomyelitis, it is a chronic neurological illness. Before I boggle your mind with the long winded symptom answer I would like to boggle your mind with an explanation about the title of the illness. Myalgic Encephalomyelitis came about in 1956. It had been recognised as an illness for many years, possibly even centuries, but this was the first time it had a name. Two UK doctors performed examinations and post-mortems and found inflammation of the neck, brain and spinal column; Encephalomyelitis. This name was paired with Myalgic to describe the muscular pain. Some patients may also have different titles for the illness. CFS, or Chronic Fatigue Syndrome, is a title coined in the 1980s by insurance companies in the United States of America. ME was costing too much money and a solution was sought to solve the expense. By coming up with a new title, more people could be described as having the illness and the view could be introduced that psychological causes and treatments could be the only path to take. The expense was therefore handed to another authority and the burden of physiological tests and trials were no longer the first instinct of medical practitioners. Chronic Fatigue is a symptom of so many other illnesses, cancer or liver failure for example and this created a great deal of misunderstanding about the original ME. Many people with CFS have these underlying illnesses that need addressing which can be dismissed; so by being given this title it is thought to be 'all in your head'. Others with CFS should be given the diagnosis of ME and will then, by some doctors, have a fuller and more rounded treatment programme. Of course all of us with ME will still come across doctors, friends, family and complete strangers (even complete health authorities) who will decide that for us it is still 'all in your head'! Other titles for ME include CFIDS, Chronic Fatigue Immune Dysfunction Syndrome and less frequently PVFS, Post Viral Fatigue Syndrome.
So the long winded symptom answer... I will now attempt to explain in depth how varied and wide ranging the symptoms and consequences of this illness can be. It is very misunderstood. As when someone who is undergoing chemotherapy may wear a wig and take great time and effort on their appearance when leaving the house, a patient of ME will only ever leave the house at their best. This may be a few times a week, once a week, once a month, or only ever to visit their doctor for a 6-monthly appointment. To leave the house takes preparation for many days in advance. A wash with a sponge and towel while sitting in bed may happen on the morning of the event. Hair wash may have happened two days before. A very light routine will have been needed for many days, almost as if saving all the energy in advance to be used for this two hours when leaving the house. Many options of clothes will have been thought through for days and maybe weeks, as temperature, weather patterns, comfort and ease of dressing are all part of the process. For this reason the outside world does not see the true consequences of ME. So much of the illness is hidden. What is hidden is how when entering the house there maybe a collapse in a chair, 3hours sleep with hot water bottles, blinding migraines, pain killers taken 4times every day to lighten the joint and muscle pain, with skin sensitivity close to having an annual flu bug on a continuous cycle. Indigestion can be chronic and leaky gut is common. Muscle weakness, including the cardiac muscle, limits activity beyond that which would be restricted by any consequential pain. A lack of sunlight can send some patients into depression as can the lack of contact with the outside world. This only causes more confusion and misunderstanding from those who are around you, as surely depression causes tiredness too, in that case 'you just need to snap out of it!' ME is so different. Anti depressants may give you a better view on life, may help you see things from a glass-half-full perspective, but it will not take away the other symptoms to any great degree. Other symptoms can include seizures, paralysis, low blood pressure, poor blood sugar regulation, hair loss, the list is endless and different for every sufferer. Each one of the symptoms can cause separate secondary symptoms and illnesses causing even more confusion. After such a mind boggling explanation all I can add is that in some ways I see ME as my body screaming at the top of it's lungs in an "I can't cope anymore!" gesture. I just have to learn how to scream right back "I'm not afraid anymore!". Over the years I have found this easier at some times than others and with having had ME for so long I am starting to say it more often and my symptoms are becoming less. It has been a long hard struggle with one thing attacking me from one side while my mind has been occupied with another alien invasion on the other. I have decided to let these invasions float on by and the aliens are starting to find that they need to search for a host who would be more inclined to have a battle.
So the long winded symptom answer... I will now attempt to explain in depth how varied and wide ranging the symptoms and consequences of this illness can be. It is very misunderstood. As when someone who is undergoing chemotherapy may wear a wig and take great time and effort on their appearance when leaving the house, a patient of ME will only ever leave the house at their best. This may be a few times a week, once a week, once a month, or only ever to visit their doctor for a 6-monthly appointment. To leave the house takes preparation for many days in advance. A wash with a sponge and towel while sitting in bed may happen on the morning of the event. Hair wash may have happened two days before. A very light routine will have been needed for many days, almost as if saving all the energy in advance to be used for this two hours when leaving the house. Many options of clothes will have been thought through for days and maybe weeks, as temperature, weather patterns, comfort and ease of dressing are all part of the process. For this reason the outside world does not see the true consequences of ME. So much of the illness is hidden. What is hidden is how when entering the house there maybe a collapse in a chair, 3hours sleep with hot water bottles, blinding migraines, pain killers taken 4times every day to lighten the joint and muscle pain, with skin sensitivity close to having an annual flu bug on a continuous cycle. Indigestion can be chronic and leaky gut is common. Muscle weakness, including the cardiac muscle, limits activity beyond that which would be restricted by any consequential pain. A lack of sunlight can send some patients into depression as can the lack of contact with the outside world. This only causes more confusion and misunderstanding from those who are around you, as surely depression causes tiredness too, in that case 'you just need to snap out of it!' ME is so different. Anti depressants may give you a better view on life, may help you see things from a glass-half-full perspective, but it will not take away the other symptoms to any great degree. Other symptoms can include seizures, paralysis, low blood pressure, poor blood sugar regulation, hair loss, the list is endless and different for every sufferer. Each one of the symptoms can cause separate secondary symptoms and illnesses causing even more confusion. After such a mind boggling explanation all I can add is that in some ways I see ME as my body screaming at the top of it's lungs in an "I can't cope anymore!" gesture. I just have to learn how to scream right back "I'm not afraid anymore!". Over the years I have found this easier at some times than others and with having had ME for so long I am starting to say it more often and my symptoms are becoming less. It has been a long hard struggle with one thing attacking me from one side while my mind has been occupied with another alien invasion on the other. I have decided to let these invasions float on by and the aliens are starting to find that they need to search for a host who would be more inclined to have a battle.
Tuesday, 29 May 2012
When Will I Be Walking Again?
A friend asked me this question recently and I was kind of flummoxed as I don't see it as a priority. The one thing that might push that part of my recovery is that it is my husband who pushes the wheelchair when we go shopping, or even for a short 'walk'(!). I would like to stop using the wheelchair and have more control when I leave the house, but as I say it is not a priority.
I am using my legs around the house, but if I use a pedometer to count my steps during the day, I am still only doing 800-1400 over 24 hours. This needs to increase and I need to lengthen my standing times between rests, before I can walk for anything more than a couple of minutes outside.
My physical energy is used in so many ways. If I was to still ask someone else to continue the cooking, someone to carry me into the garden if I wanted to sit in the shade on a sunny day, maybe also fetch and carry items around the house at my beck and call, then I might be walking 500 yards every day. I use energy in so many ways; when eating, getting dressed, making scrambled egg or a frozen, pre-chopped vegetable based curry! Also when filling my day with time passing activities; knitting, playing patience, doing jigsaws, reading, writing. The one thing I must mention is that energy is needed in this time to heal the body too. De-conditioned muscle needs time and energy to heal, more than a daily night's sleep will give.
Also my legs need practice walking. I am stretching my hamstrings in yoga, in putting a couple of plates in the dishwasher. My hip joints stiffen at the slightest weight bearing and more than a couple of minutes standing still. My yoga exercises are important, by sitting cross-legged, bearing my own body weight and stretching the spine.
Moving around the house will increase as the days, weeks and months go by. When this is nearer normal, or acceptable levels I will start to move about outside. I have had too many experiences over the years of walking around outside only to come home and collapse in an exhausted heap. During these times I have relied so much on others for day-to-day living needs. I am searching for a life where I can function inside and out of the house. Showing others that I can use my legs is not a priority; my priority is feeding myself, washing myself, dressing myself, enjoying hobbies and daily life. Once I have achieved that, I will encourage the outside world to enter into my life again and I will start to explore the one hobby I do still crave; going for quiet, peaceful, adventure-filled walks. (Oxymoron intended!)
I am using my legs around the house, but if I use a pedometer to count my steps during the day, I am still only doing 800-1400 over 24 hours. This needs to increase and I need to lengthen my standing times between rests, before I can walk for anything more than a couple of minutes outside.
My physical energy is used in so many ways. If I was to still ask someone else to continue the cooking, someone to carry me into the garden if I wanted to sit in the shade on a sunny day, maybe also fetch and carry items around the house at my beck and call, then I might be walking 500 yards every day. I use energy in so many ways; when eating, getting dressed, making scrambled egg or a frozen, pre-chopped vegetable based curry! Also when filling my day with time passing activities; knitting, playing patience, doing jigsaws, reading, writing. The one thing I must mention is that energy is needed in this time to heal the body too. De-conditioned muscle needs time and energy to heal, more than a daily night's sleep will give.
Also my legs need practice walking. I am stretching my hamstrings in yoga, in putting a couple of plates in the dishwasher. My hip joints stiffen at the slightest weight bearing and more than a couple of minutes standing still. My yoga exercises are important, by sitting cross-legged, bearing my own body weight and stretching the spine.
Moving around the house will increase as the days, weeks and months go by. When this is nearer normal, or acceptable levels I will start to move about outside. I have had too many experiences over the years of walking around outside only to come home and collapse in an exhausted heap. During these times I have relied so much on others for day-to-day living needs. I am searching for a life where I can function inside and out of the house. Showing others that I can use my legs is not a priority; my priority is feeding myself, washing myself, dressing myself, enjoying hobbies and daily life. Once I have achieved that, I will encourage the outside world to enter into my life again and I will start to explore the one hobby I do still crave; going for quiet, peaceful, adventure-filled walks. (Oxymoron intended!)
Subscribe to:
Posts (Atom)