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Chronic Fatigue Syndrome
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<blockquote data-quote="Marguerite" data-source="post: 15692" data-attributes="member: 1991"><p>I think the trick with exercise is to stay within your own limitations. I'm rare - I don't suffer from after-effects if I over-exercise, I just collapse. My body just won't do it. Of course there are the usual sore muscles for days, but everyone gets that (just maybe from a bit more exercise than I can manage). But I've known others to have a really great day, say, "I can do this," then overdo things badly and put themselves back to bed for a week or more.</p><p></p><p>I've found that the best exercise for me is walking. I walk as far as I can manage on that day, and usually wait until the day is mostly over, so I don't use up energy my family could benefit from. "As far as I can manage" might be 10 yards or 1000 yards. But I do what I can, reaching to JUST BEFORE my limit. I haven't been able to run for years. I only swim short distances, counting strokes. I've barely got to ten this year. Last year I could swim 60 strokes at a time.</p><p>Standing is awful. It's much more tiring than it seems. I've been known to sit on the floor rather than stand. I no longer care if I'm in a shopping centre - if I have to sit, I'll sit. Getting back up is tricky, but I crawl over to a solid object and slowly pull myself up. If a shop assistant gets tetchy about it, I point out that I wouldn't have to sit on the floor if they provided seating.</p><p></p><p>I heard a great analogy once. Where most people have a full jug of energy, we don't. It's like we only have half a jug (or less). The amount we have in our jug will vary from day to day and we can't always see into the jug - we have to judge by how heavy it feels.</p><p>When our jug is empty, we can no longer do anything that day. So we have to ration our energy so we can spend it wisely and put it to good use. But since we will get more energy the next day, it is good practice to have used up almost all the energy by the end of the day.</p><p>Trying to use more than you have - you end up scraping out the jug. This will eventually wear holes in the jug and it will then leak, not even holding your daily ration.</p><p></p><p>So we go carefully. Use up most or all of our ration of energy each day and it makes it easier to be sure we'll get a similar amount next day. Don't do too little, don't do too much.</p><p></p><p>I met one bloke who got CFS and put himself to bed. His wife waited on him constantly. OK, I was jealous, because I had nobody to wait on me. But he commented that I needed more mechanical aid to get around than he did but yet I managed to get things done; after the conference we were both attending, he realised he needed to become more active - he had taken the concept of "rest" a bit TOO far. Meanwhile, I've met others who genuinely can't get out of bed. I coincidentally was talking to one woman this afternoon who needs constant care and has had to use a walking frame since she was 20. She has been described as "the worst case of CFS I've ever seen" by several specialists. She now has severe muscle wasting due to her long-term inability to exercise. We had to cut our phone conversation short because both of us were getting too tired, just holding the phone. I could hardly hear her - she has little power in her voice. But she forces herself to do things like go out with friends for a cup of coffee, even though the effort of even walking a few steps will put her in bed for days. She needs help with basic care and even gets tired just trying to eat.</p><p></p><p>Some people get CFS and mentally put their lives on hold, waiting to get better to resume their lives. This is not a good idea, because meanwhile life is passing you by. You may recover and find you're years older with no life skills. But if you use that intervening time to do something with yourself and for yourself, you have still grown. My friend from this afternoon took up art, working in pastels on her good days. The colours were helping her mood a lot and she would then write a short note in the card and send it to a friend. She listens to the radio (we have a network that reads to people, ideal for the blind as well as those who can't hold a book or newspaper) and keeps herself up to date with news.</p><p></p><p>It all comes down to balance again.</p><p></p><p>Marg</p></blockquote><p></p>
[QUOTE="Marguerite, post: 15692, member: 1991"] I think the trick with exercise is to stay within your own limitations. I'm rare - I don't suffer from after-effects if I over-exercise, I just collapse. My body just won't do it. Of course there are the usual sore muscles for days, but everyone gets that (just maybe from a bit more exercise than I can manage). But I've known others to have a really great day, say, "I can do this," then overdo things badly and put themselves back to bed for a week or more. I've found that the best exercise for me is walking. I walk as far as I can manage on that day, and usually wait until the day is mostly over, so I don't use up energy my family could benefit from. "As far as I can manage" might be 10 yards or 1000 yards. But I do what I can, reaching to JUST BEFORE my limit. I haven't been able to run for years. I only swim short distances, counting strokes. I've barely got to ten this year. Last year I could swim 60 strokes at a time. Standing is awful. It's much more tiring than it seems. I've been known to sit on the floor rather than stand. I no longer care if I'm in a shopping centre - if I have to sit, I'll sit. Getting back up is tricky, but I crawl over to a solid object and slowly pull myself up. If a shop assistant gets tetchy about it, I point out that I wouldn't have to sit on the floor if they provided seating. I heard a great analogy once. Where most people have a full jug of energy, we don't. It's like we only have half a jug (or less). The amount we have in our jug will vary from day to day and we can't always see into the jug - we have to judge by how heavy it feels. When our jug is empty, we can no longer do anything that day. So we have to ration our energy so we can spend it wisely and put it to good use. But since we will get more energy the next day, it is good practice to have used up almost all the energy by the end of the day. Trying to use more than you have - you end up scraping out the jug. This will eventually wear holes in the jug and it will then leak, not even holding your daily ration. So we go carefully. Use up most or all of our ration of energy each day and it makes it easier to be sure we'll get a similar amount next day. Don't do too little, don't do too much. I met one bloke who got CFS and put himself to bed. His wife waited on him constantly. OK, I was jealous, because I had nobody to wait on me. But he commented that I needed more mechanical aid to get around than he did but yet I managed to get things done; after the conference we were both attending, he realised he needed to become more active - he had taken the concept of "rest" a bit TOO far. Meanwhile, I've met others who genuinely can't get out of bed. I coincidentally was talking to one woman this afternoon who needs constant care and has had to use a walking frame since she was 20. She has been described as "the worst case of CFS I've ever seen" by several specialists. She now has severe muscle wasting due to her long-term inability to exercise. We had to cut our phone conversation short because both of us were getting too tired, just holding the phone. I could hardly hear her - she has little power in her voice. But she forces herself to do things like go out with friends for a cup of coffee, even though the effort of even walking a few steps will put her in bed for days. She needs help with basic care and even gets tired just trying to eat. Some people get CFS and mentally put their lives on hold, waiting to get better to resume their lives. This is not a good idea, because meanwhile life is passing you by. You may recover and find you're years older with no life skills. But if you use that intervening time to do something with yourself and for yourself, you have still grown. My friend from this afternoon took up art, working in pastels on her good days. The colours were helping her mood a lot and she would then write a short note in the card and send it to a friend. She listens to the radio (we have a network that reads to people, ideal for the blind as well as those who can't hold a book or newspaper) and keeps herself up to date with news. It all comes down to balance again. Marg [/QUOTE]
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