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Chronic Fatigue Syndrome
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<blockquote data-quote="Pam R" data-source="post: 15682" data-attributes="member: 108"><p>I've had this for 30 years. People do NOT understand, mostly because "you look fine". As you said, no broken arm, etc.</p><p></p><p>My son insists there is nothing wrong with me. Mostly because denial is how he copes. But he can be downright cruel at times, as you expressed.</p><p></p><p>Most of my extended family members felt there was nothing wrong with me, also. Because of the stress this caused, I cut off contact. If no support was forthcoming, just stress, I could do without it. I HAD to.</p><p></p><p>Recent UK research has found 5 (I think) genes that are related to both the disease and stress. These genes do not serve well under stress. So now there is a physical link.</p><p></p><p>I know for me, stress is the #1 killer. Reducing stress in my life (with a homeschooled difficult child) has been critical to not becoming bed ridden.</p><p></p><p>I also have had severe depression but it's very different from the disease, though they may share symptoms.</p><p></p><p>I suppose having a diagnosis now validates you. I felt validated for a short while after diagnosis. Now I wish I had a more visible disease, if I must have one. :hammer: (I really must be careful what I wish for!! LOL)</p><p></p><p>My best suggestion would be to make SURE you take care of YOU. As you've discovered, if you do not, you won't be able to care for anyone else.</p><p></p><p>I am very pro-active in self care, doing what I need to and getting what I need. No one else will do it. It's the only way I can remain at all functional.</p><p></p><p>Things that worked for me: eliminating stressful people; ART (agressive rest therapy); seriously cleaning up my diet and working hard to keep it that way; seriously cleaning up my sleep hygiene and maintaining it; finding and practising things I enjoy (music, outside activities like live music and lectures; gardening; reading; working with pictures). Most of these things I enjoy are sedentary, even the gardening. husband and DS do the walking/standing stuff for me.</p><p></p><p>Anything aerobic can cause a serious set back. I use a wheel chair for outside things that require walking/standing of any sizeable amount. </p><p></p><p>But I go to the gym twice a week, and do stretching and then work VERY lightly on the Nautilus machines. When I started, I could do 1 rep (NOT 1 set) on 7 of the 14 machines. Over 4-5 months I worked up VERY slowly to 1/2 set (5 reps) on all the machines. This is the most I've ever been able to do over the winter.</p><p></p><p>I only go during the winter, to try to maintain what ever muscle tone I have, so I can resume gardening in April. Plus I just do not have enough energy to do both.</p><p></p><p>Another thing I'd like to mention is one theory is that things just do not work well at the cellular level. This means, of course, low energy, but for me, it also means the toxins/waste generated in creating energy are not removed properly.</p><p></p><p>Because of this the brain is first affected by this build-up (brainfog). But toxins also cause the aches in muscles and for me, mean weird neurological stuff happens. So I try to avoid anything aerobic involving large muscle masses, as these create huge amounts of toxins quickly.</p><p></p><p>For me, even large amounts of cognitive work cause brainfog. It all takes energy to happen.</p><p></p><p>There are many online support groups out there. Find one that's kind and supportive. Not all of them are.</p><p></p><p>And remember, be kind and caring of YOU. :smile:)</p><p></p><p>Pam R.</p></blockquote><p></p>
[QUOTE="Pam R, post: 15682, member: 108"] I've had this for 30 years. People do NOT understand, mostly because "you look fine". As you said, no broken arm, etc. My son insists there is nothing wrong with me. Mostly because denial is how he copes. But he can be downright cruel at times, as you expressed. Most of my extended family members felt there was nothing wrong with me, also. Because of the stress this caused, I cut off contact. If no support was forthcoming, just stress, I could do without it. I HAD to. Recent UK research has found 5 (I think) genes that are related to both the disease and stress. These genes do not serve well under stress. So now there is a physical link. I know for me, stress is the #1 killer. Reducing stress in my life (with a homeschooled difficult child) has been critical to not becoming bed ridden. I also have had severe depression but it's very different from the disease, though they may share symptoms. I suppose having a diagnosis now validates you. I felt validated for a short while after diagnosis. Now I wish I had a more visible disease, if I must have one. [img]:hammer:[/img] (I really must be careful what I wish for!! LOL) My best suggestion would be to make SURE you take care of YOU. As you've discovered, if you do not, you won't be able to care for anyone else. I am very pro-active in self care, doing what I need to and getting what I need. No one else will do it. It's the only way I can remain at all functional. Things that worked for me: eliminating stressful people; ART (agressive rest therapy); seriously cleaning up my diet and working hard to keep it that way; seriously cleaning up my sleep hygiene and maintaining it; finding and practising things I enjoy (music, outside activities like live music and lectures; gardening; reading; working with pictures). Most of these things I enjoy are sedentary, even the gardening. husband and DS do the walking/standing stuff for me. Anything aerobic can cause a serious set back. I use a wheel chair for outside things that require walking/standing of any sizeable amount. But I go to the gym twice a week, and do stretching and then work VERY lightly on the Nautilus machines. When I started, I could do 1 rep (NOT 1 set) on 7 of the 14 machines. Over 4-5 months I worked up VERY slowly to 1/2 set (5 reps) on all the machines. This is the most I've ever been able to do over the winter. I only go during the winter, to try to maintain what ever muscle tone I have, so I can resume gardening in April. Plus I just do not have enough energy to do both. Another thing I'd like to mention is one theory is that things just do not work well at the cellular level. This means, of course, low energy, but for me, it also means the toxins/waste generated in creating energy are not removed properly. Because of this the brain is first affected by this build-up (brainfog). But toxins also cause the aches in muscles and for me, mean weird neurological stuff happens. So I try to avoid anything aerobic involving large muscle masses, as these create huge amounts of toxins quickly. For me, even large amounts of cognitive work cause brainfog. It all takes energy to happen. There are many online support groups out there. Find one that's kind and supportive. Not all of them are. And remember, be kind and caring of YOU. [img]:smile:[/img]) Pam R. [/QUOTE]
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