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Need advice from those who are chronically ill (long)
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<blockquote data-quote="Marguerite" data-source="post: 259695" data-attributes="member: 1991"><p>Some years ago in another lifetime, I had a great deal to do with a medical team that were at the forefront in the world, of treating people, including teens and pre-teens, with Chronic Fatigue Syndrome. At the time some of the treatments were controversial and in some cases were, I feel, a bit too tough. However, they did pull back a little and in the end had great results with a combination of multidisciplinary approach and getting people active instead of allowing them to crawl into a hole.</p><p></p><p>I have also experienced something similar, because my own health issues were sufficiently close, for my doctor to think I might benefit. I not only talked to other patients, I interviewed the doctors and then found out what it was likfe on the receiving end.</p><p></p><p>Results - what you have to do, is keep her involved in life and NOT simply "marking time" while she waits to get better. Especially while still youing, she needs the social interaction with peers, so even when she's bedridden, arrange for friends to drop over on a regular basis. Encourage her to go out for an evening or for a few hours with friends. Even if she spends the next day in bed, if she has a short outing with peers (shopping for jewellery at the mall, for example) it is worth it.</p><p></p><p>The other thing to watch for - STOP ENABLING HER. Let HER work out her own rest needs but also ewncourage her to set time limits on her rest, then get active for a bit, then rest again. Rest when you need to, and ONLY when you need to. As far as activity - she should do as much as she can, push herself somewhat if she can, but stop before she gets too tired. Plan to have rest available after exercise, but also PLAN to exercise.</p><p></p><p>If she is finding headaches a problem, finding it difficult to get out of the house due to the beginnings of agoraphobia, then perhaps going for a walk at night could be an option (depending on where you live, of course). Walk with her to keep her safe if you need to. I also get headaches (not as bad as I used to) and found that wraparound sunglasses were good as preventive. I get the ones that you put over ordinary prescription specs because they block out a lot of light from the side. I learned to avoid strong contrast, I sit with my back to windows or to the view.Even indoors I will wear sunglasses if there is a brightly lit window or doorway in my line of sight.</p><p></p><p>As for school - she needs to get herself there, but also needs to build in a rest opportunity. Partial enrolment can be one solution. Having the option of going to sick bay with schoolwork, so she can rest if she needs to, then go back to class - a good middle-of-the-road choice. Correspondence lessons can be another. Having HER have the call, making the choice - is what is needed. She needs to learn her own limits as well as her own capabilities. Depending on how much she is letting fear control her, you may need to push her hard. This is the painful bit.</p><p></p><p>A multidisciplinary team is really valuable here. If there is a CFIDS multidiscplinary team you can access, they may be able to give you advice which should easily cross over to Lyme Disease.</p><p></p><p>I would also never accept the diagnosis without question. Even if Lyme was confirmed, there is always the possibility that there is something else there too, masked by the original diagnosis. Always keep an open mind, always question, always challenge, always keep pushing her (or encourage her to keep pushing herself) and the more she makes her own decisions to get active at least to a small extent, the better.</p><p></p><p>There is life after this sort of illness. Not just mere existence. But time in the meantime marches on, she mustn't get into the habit of thinking, "I will do X when I get better..." because she needs to be doing it NOW. Life is for living now, not for postponing until she feels stronger.</p><p></p><p>Part of Lyme as well as part of CFIDS can be mental "fogginess" which can interfere with learning, making it phsyically exhausting just to read a book. Help her find ways to reduced the rate of fatigue but also help her recognise that there ARE other ways. Lateral thinking. Getting creative with lifestyle.</p><p></p><p>But she MUST get out and live, now.</p><p></p><p>At all costs. She also needs to take control back, herself. Make her take on some personal responsibilities for herself - maybe don't make her do all the usual chores at the one time, but she needs to be doing chores, even as part of a team. Do not wait on her hand and foot, or even come close. </p><p></p><p>Example - sometimes I've needed husband to help me wash my hair. I also need help to hang out washing. But I fill the washing machine, I empty the washing machine, I organise the chores so the ones I can't do, I have help lined up.</p><p></p><p>I've seen people who are living with someone who CAN care for them, and these people can get into the pattern of "resting until they get better" and not have to lift a finger to do anything, because they desperately fear it will make them worse and so do their family.</p><p></p><p>The best way out of this - she needs to push herself, but steadily, slowly, building up in manageable increments. If she has a bad day or a relapse, she needs to ease back (not too much) and then get back onto the treadmill when she can. Relapses happen for all sorts of reasons, not necessarily because she overdid things. And it doesn't mean being worse off than before, or losing all that ground, or anything so dire. She needs to know that it WILL be OK. </p><p></p><p>I hope this can help. She needs to be in touch with other kids, first and foremost. Invite kids round for a popcorn party or something. If it tires her out - so what? her body can rest. her mind needs to grow.</p><p></p><p>Marg</p></blockquote><p></p>
[QUOTE="Marguerite, post: 259695, member: 1991"] Some years ago in another lifetime, I had a great deal to do with a medical team that were at the forefront in the world, of treating people, including teens and pre-teens, with Chronic Fatigue Syndrome. At the time some of the treatments were controversial and in some cases were, I feel, a bit too tough. However, they did pull back a little and in the end had great results with a combination of multidisciplinary approach and getting people active instead of allowing them to crawl into a hole. I have also experienced something similar, because my own health issues were sufficiently close, for my doctor to think I might benefit. I not only talked to other patients, I interviewed the doctors and then found out what it was likfe on the receiving end. Results - what you have to do, is keep her involved in life and NOT simply "marking time" while she waits to get better. Especially while still youing, she needs the social interaction with peers, so even when she's bedridden, arrange for friends to drop over on a regular basis. Encourage her to go out for an evening or for a few hours with friends. Even if she spends the next day in bed, if she has a short outing with peers (shopping for jewellery at the mall, for example) it is worth it. The other thing to watch for - STOP ENABLING HER. Let HER work out her own rest needs but also ewncourage her to set time limits on her rest, then get active for a bit, then rest again. Rest when you need to, and ONLY when you need to. As far as activity - she should do as much as she can, push herself somewhat if she can, but stop before she gets too tired. Plan to have rest available after exercise, but also PLAN to exercise. If she is finding headaches a problem, finding it difficult to get out of the house due to the beginnings of agoraphobia, then perhaps going for a walk at night could be an option (depending on where you live, of course). Walk with her to keep her safe if you need to. I also get headaches (not as bad as I used to) and found that wraparound sunglasses were good as preventive. I get the ones that you put over ordinary prescription specs because they block out a lot of light from the side. I learned to avoid strong contrast, I sit with my back to windows or to the view.Even indoors I will wear sunglasses if there is a brightly lit window or doorway in my line of sight. As for school - she needs to get herself there, but also needs to build in a rest opportunity. Partial enrolment can be one solution. Having the option of going to sick bay with schoolwork, so she can rest if she needs to, then go back to class - a good middle-of-the-road choice. Correspondence lessons can be another. Having HER have the call, making the choice - is what is needed. She needs to learn her own limits as well as her own capabilities. Depending on how much she is letting fear control her, you may need to push her hard. This is the painful bit. A multidisciplinary team is really valuable here. If there is a CFIDS multidiscplinary team you can access, they may be able to give you advice which should easily cross over to Lyme Disease. I would also never accept the diagnosis without question. Even if Lyme was confirmed, there is always the possibility that there is something else there too, masked by the original diagnosis. Always keep an open mind, always question, always challenge, always keep pushing her (or encourage her to keep pushing herself) and the more she makes her own decisions to get active at least to a small extent, the better. There is life after this sort of illness. Not just mere existence. But time in the meantime marches on, she mustn't get into the habit of thinking, "I will do X when I get better..." because she needs to be doing it NOW. Life is for living now, not for postponing until she feels stronger. Part of Lyme as well as part of CFIDS can be mental "fogginess" which can interfere with learning, making it phsyically exhausting just to read a book. Help her find ways to reduced the rate of fatigue but also help her recognise that there ARE other ways. Lateral thinking. Getting creative with lifestyle. But she MUST get out and live, now. At all costs. She also needs to take control back, herself. Make her take on some personal responsibilities for herself - maybe don't make her do all the usual chores at the one time, but she needs to be doing chores, even as part of a team. Do not wait on her hand and foot, or even come close. Example - sometimes I've needed husband to help me wash my hair. I also need help to hang out washing. But I fill the washing machine, I empty the washing machine, I organise the chores so the ones I can't do, I have help lined up. I've seen people who are living with someone who CAN care for them, and these people can get into the pattern of "resting until they get better" and not have to lift a finger to do anything, because they desperately fear it will make them worse and so do their family. The best way out of this - she needs to push herself, but steadily, slowly, building up in manageable increments. If she has a bad day or a relapse, she needs to ease back (not too much) and then get back onto the treadmill when she can. Relapses happen for all sorts of reasons, not necessarily because she overdid things. And it doesn't mean being worse off than before, or losing all that ground, or anything so dire. She needs to know that it WILL be OK. I hope this can help. She needs to be in touch with other kids, first and foremost. Invite kids round for a popcorn party or something. If it tires her out - so what? her body can rest. her mind needs to grow. Marg [/QUOTE]
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