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.
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!
Wednesday, 30 January 2013
Plague and Pestilence
Well not quite!
I have a good old winter sore throat and down in the doldrums yuckiness. You may remember that I wrote in the Autumn about being pleased to have a virus, (heavy cold, good sign or bad) knowing that I could rely on my immune system better to rid it from my body. So now I am astonished again. I have all the symptoms, not just a bit of a runny nose. The average adult in the UK gets 5-6 colds or other viruses every year so once every couple of months is about right. I'm doing OK especially considering the number of times I have left the house in the vicinity of coughing, hacking, children and shopping centres!
For the first time in a while I've experienced insomnia this weekend. It is a problem a lot of ME patients battle with constantly. Except when I was first ill, I never had this problem continually, only if, like now, something else came along to interrupt my sleep. I took steps every day as I knew it might become an issue again if I let it take hold. The steps included and early evening meal. I still eat at about 5.30pm with a small snack, an apple, or a fruit yoghurt for example between 8pm and 9pm. Then I encourage my body to relax with no real activity after 9 pm. I will watch TV after this time as my tolerance for this has changed in the last year. I used to be wary of what I was watching- it had to be relaxing or mildly relaxing, like a cookery show or TV comedy or period drama.
Finally helping me sleep would be an audio book or as is now, my husband reading to me. I can read myself to sleep now sometimes too.
The biggest thing I learnt years ago was to not let myself sleep during the day. I would allow myself two hours in the afternoon at the most and make sure I woke up by 5pm. I still do that now and it prevents me from not sleeping at night, as the total hours sleep during the day ends up being around 12-14 hours. The other option during the day is to choose a Yoga Nidra meditation (Yoga Nidra and Introduction to Yoga Nidra?) or self hypnosis as these can recharge the body as much as sleep. Taking the body into deep relaxation helps me recover much faster.
As it still feels that my bones are actually aching with this yuckiness, whatever it is, my wrists have had enough typing, so I'll leave it there. Hope you're feeling well!
Saturday, 12 January 2013
Winter Yoga
Those of you who know me personally will realise how important yoga has been to my growth so far in the last year. I cannot emphasise enough how much it has helped me. My yoga has changed in the last four months...you may remember I was doing a yoga class everyday, loving every minute. There was aching sometimes and also some days when I was wishing I hadn't. But the fundamental yoga practices are already locked in my brain. I find myself recognising them in my day-to-day life now, without thinking.
Breath is such an important point. I come back to my breath, notice it, meditate on it, so many times every day I would lose count if I tried to keep a tally. If I find myself tensing up or worrying, if my body is uncomfortable or in pain, I come back to my breath so automatically it is a great comfort. It gives me the consciousness to realise any discomfort and release the tension. That release is a cleansing of my body, mind and spirit.
Mountain pose, dancer, down-facing dog, cat, so many poses come into my life. I may not be attending a full class, but I just get down on the floor and release like that too.
Chinese medicine recognises winter as a time to slow down, to regenerate, to rest and heal. I was freaked out by what my body started doing in the Autumn as the nights started drawing in. I stopped doing a yoga class every morning, I was sleeping for an extra two hours most days and I was more tired during the day. Nothing but concern hit my mind "what is happening?", "am I going backwards?", "have all my efforts failed". I knew it wasn't SAD, Seasonal Affected Disorder, as I actually felt quite high in spirit, happy and content. But someone pointed out this phenomenon to me and it seemed so natural and true. By body might be more tired, working more slowly, but my mind is learning lessons every day, I feel stronger, more healthy inside than I have in a long time. My digestion, my lungs (I can actually walk outside in the cold, without stopping to catch my breath every few paces), my desire to socialise, to try and help in the home more; its all signs of improvement and I'm grateful for them.
A fantastic book I have, The Chocolate Cake Sutra, by Geri Larkin offers an autobiographical tale showing how the yogic lifestyle can become part of everyday life, no matter what worries or hurdles may come your way. I feel like a true yogi (or yogini!) knowing I can live this winter to the best of my ability and be happy in that. I breathe, move, live with my sutras. With breath, meditation, poses, gratefulness, trust, and belief. I am getting better and yoga has helped me find that path.
Tuesday, 8 January 2013
New Year, New Me
This isnt so much a resolution blog post, just a gathering of thoughts. So don't expect any diets or revolutionary new treatments ( I refuse to have mud baths three times a week!!!- my sense of humour will keep me going though!)
2012 has been an amazing year for me. Just remembering the state of my body, the things I couldn't do this time last year is all I need to spur me on to achieve the similar bounds in 2013.
I would like to be able to walk every day if I choose to, or have to. I would like to walk and carry something at the same time. I struggle with the obligatory handbag I carry at the moment if I am in town. Most of the time I have it wedged under my armpit so I notice the weight least. When I go for a therapeutic walk I just have my keys and phone- I'm unlikely to do a weekly shop or need a paracetamol or teabag while I'm sitting watching the ducks by the river!
I also dream about managing some gardening on a larger scale, this year I put some potatoes in two pots, tided the patio a couple of times and you may remember I also cleared the landscaping bark from the gravel! The tasks in our garden have to be divided up, we have so many flowerbeds and so much grass and scrub. I know we are lucky and it was one of the reasons we chose this bungalow to be ours but I have a gardener's mind...once I get started there's very little stopping me and my ideas keep flowing. Maybe I will make this a goal for this year, to choose one gardening job at a time and manage it in small bursts. A friend of mine knows an ME patient who managed his recovery by building a shed. He promised himself he would go out and build on the days when he was able and work for 5 minutes or 2 hours, the days would dictate, not a strict timetable (not the way most bosses would prefer it, but I don't think my garden will complain that much!).
I also hope 2013 brings me the opportunity to visit my friends.The last time I did this was 2007 and it was a disaster. Sleeping on the sofa bed, travelling on the train, too much noise and activity, too many people in one house during the weekend for my body to cope with and I came home to have seizures during the next week. I have started this dream already. This week, for five days I am staying with a friend while her parents are on holiday. As she also has ME we are great company for each other. The understanding of "not today", and "can I have some peace and quiet for an hour?" is perfect. Over the next 12 months we have already agreed to repeat this experiment, as it has obviously worked and I will try and visit at least one other person too. It has been slightly gut-retching as it has been the first night my husband and I have slept in separate beds, in separate houses. Almost eight years of marriage and we have been inseparable! (I quite like it actually- having a whole double bed to myself!)
So 2013 involves walking, carrying, gardening and visiting... oh and playing the piano. I'm desperate to do that again, to play with full abandon; I used to play for hours at a time, just loving every moment. As with walking and gardening I probably need to let myself go occasionally, then draw in the stays most days and find some discipline! Happy New Year!
2012 has been an amazing year for me. Just remembering the state of my body, the things I couldn't do this time last year is all I need to spur me on to achieve the similar bounds in 2013.
I would like to be able to walk every day if I choose to, or have to. I would like to walk and carry something at the same time. I struggle with the obligatory handbag I carry at the moment if I am in town. Most of the time I have it wedged under my armpit so I notice the weight least. When I go for a therapeutic walk I just have my keys and phone- I'm unlikely to do a weekly shop or need a paracetamol or teabag while I'm sitting watching the ducks by the river!
I also dream about managing some gardening on a larger scale, this year I put some potatoes in two pots, tided the patio a couple of times and you may remember I also cleared the landscaping bark from the gravel! The tasks in our garden have to be divided up, we have so many flowerbeds and so much grass and scrub. I know we are lucky and it was one of the reasons we chose this bungalow to be ours but I have a gardener's mind...once I get started there's very little stopping me and my ideas keep flowing. Maybe I will make this a goal for this year, to choose one gardening job at a time and manage it in small bursts. A friend of mine knows an ME patient who managed his recovery by building a shed. He promised himself he would go out and build on the days when he was able and work for 5 minutes or 2 hours, the days would dictate, not a strict timetable (not the way most bosses would prefer it, but I don't think my garden will complain that much!).
I also hope 2013 brings me the opportunity to visit my friends.The last time I did this was 2007 and it was a disaster. Sleeping on the sofa bed, travelling on the train, too much noise and activity, too many people in one house during the weekend for my body to cope with and I came home to have seizures during the next week. I have started this dream already. This week, for five days I am staying with a friend while her parents are on holiday. As she also has ME we are great company for each other. The understanding of "not today", and "can I have some peace and quiet for an hour?" is perfect. Over the next 12 months we have already agreed to repeat this experiment, as it has obviously worked and I will try and visit at least one other person too. It has been slightly gut-retching as it has been the first night my husband and I have slept in separate beds, in separate houses. Almost eight years of marriage and we have been inseparable! (I quite like it actually- having a whole double bed to myself!)
So 2013 involves walking, carrying, gardening and visiting... oh and playing the piano. I'm desperate to do that again, to play with full abandon; I used to play for hours at a time, just loving every moment. As with walking and gardening I probably need to let myself go occasionally, then draw in the stays most days and find some discipline! Happy New Year!
Wednesday, 12 December 2012
Selfish Escapism
You've guessed it! We're running away this Christmas. Finding some peace and quiet to escape the exhausting round of family get-togethers that can dictate Christmas. We see family throughout the year so there is no need to definitely choose Christmas as the one time we see everyone from all sides of the family within one week!
I have to be selfish and put my needs first. I did it last year and had a wonderful time. We had meals delivered by the supermarket, all ready to go in the oven. More expensive than ready-meals, but cheaper than going out or eating takeaways. And it was lovely. I saw my parents and siblings for a couple of hours, spending much of that time lying on the sofa. I then enjoyed quiet time, with my husband, watching DVDs, sleeping when I needed to and we also continued researching ME and began my routine of meditation and yoga.
I have come a long way in the last 12 months. I can dress myself. I can leave the house without fear of collapse. I can talk to someone on the 'phone for more than 10 minutes. I can be in a room with group of people and work out cognitively what is happening in the conversation! I can knit again. I can eat my husband's chocolate birthday cake next week and enjoy a pudding when we go out for a meal once a month, apple crumble after a main course or a chocolate muffin in a coffee shop-I'm not fussy, but the fact that my body doesn't react with dire consequences is amazing.
So much of this is down to yoga, meditation, the research in ME that helps me understand my different symptoms and how to cope with and stop them. I have also removed myself from positions that didnt help me, from people and places, objects and situations that gave me the worst symptoms. Saying "no" a lot more (and believe me I said it a lot anyway!) but also realising that people respect me for being able to make "no" decisions. I'm doing what is right for me and it is helping me recover.
Happy Christmas Everyone!
I have to be selfish and put my needs first. I did it last year and had a wonderful time. We had meals delivered by the supermarket, all ready to go in the oven. More expensive than ready-meals, but cheaper than going out or eating takeaways. And it was lovely. I saw my parents and siblings for a couple of hours, spending much of that time lying on the sofa. I then enjoyed quiet time, with my husband, watching DVDs, sleeping when I needed to and we also continued researching ME and began my routine of meditation and yoga.
I have come a long way in the last 12 months. I can dress myself. I can leave the house without fear of collapse. I can talk to someone on the 'phone for more than 10 minutes. I can be in a room with group of people and work out cognitively what is happening in the conversation! I can knit again. I can eat my husband's chocolate birthday cake next week and enjoy a pudding when we go out for a meal once a month, apple crumble after a main course or a chocolate muffin in a coffee shop-I'm not fussy, but the fact that my body doesn't react with dire consequences is amazing.
So much of this is down to yoga, meditation, the research in ME that helps me understand my different symptoms and how to cope with and stop them. I have also removed myself from positions that didnt help me, from people and places, objects and situations that gave me the worst symptoms. Saying "no" a lot more (and believe me I said it a lot anyway!) but also realising that people respect me for being able to make "no" decisions. I'm doing what is right for me and it is helping me recover.
Happy Christmas Everyone!
Tuesday, 6 November 2012
Yuck and Yum!
I've been given Antibiotics for an infection in my skin, glands and ear on the right side of my face. Yuck! Nice and puffy, red and sore, ear keeps popping, Yuck!
I've been "coping" for the last few days (the place is a mess!) and have just sorted hubbie's lunch for tomorrow. I managed to break up two thirds of a cauliflower and two mushrooms and added them to a frying pan which had two chopped up rashers of streaky bacon sizzling in garlic butter (I love that I can buy ready-prepared garlic butter in the supermarket!)
Once browned I added a couple of tablespoons of water and steamed with a lid on for 5 minutes, then it went into the oven, without the lid, for 15 minutes. Yum!
We cooked four jacket potatoes yesterday, so the last of them with cheese and some fruit to finish should suffice.
I really want to try this idea with walnuts instead of the bacon as walnuts are supposedly a great option to eat with cauliflower, but as nuts aren't allowed at OHs place of work, that will have to wait for another day.
Yum!
I've been "coping" for the last few days (the place is a mess!) and have just sorted hubbie's lunch for tomorrow. I managed to break up two thirds of a cauliflower and two mushrooms and added them to a frying pan which had two chopped up rashers of streaky bacon sizzling in garlic butter (I love that I can buy ready-prepared garlic butter in the supermarket!)
Once browned I added a couple of tablespoons of water and steamed with a lid on for 5 minutes, then it went into the oven, without the lid, for 15 minutes. Yum!
We cooked four jacket potatoes yesterday, so the last of them with cheese and some fruit to finish should suffice.
I really want to try this idea with walnuts instead of the bacon as walnuts are supposedly a great option to eat with cauliflower, but as nuts aren't allowed at OHs place of work, that will have to wait for another day.
Yum!
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