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Need advice from those who are chronically ill (long)
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<blockquote data-quote="Marguerite" data-source="post: 259747" data-attributes="member: 1991"><p>Something just touched on by others has reminded me of something I meant to mention - this is important. For her especially, but also for you.</p><p></p><p>Take vitamins, eat a healthy diet, get plenty of sleep but not too much, try to avoid slipping into sleeping during the day but being awake at night. If this means you have to look after your health (and she, hers) like an Olympic athlete, then so be it. But I agree, it is important to not get too self-absorbed into your own illness. it is so very easy to go round in ever diminishing circles and eventually fining going up your own read end, if you focus too much on yourself.</p><p></p><p>I've found being a parent forced me to have to cope. I have had to find other ways to do some tasks - when difficult child 3 was a baby, I had a lot of trouble holding the spoon when feeding him, so I found a way of building up the spoon handle with foam so I could manage to hold it more easily. I had more foam on the handle of my hair brush and on my toothbrush. I eventually got an electric toothbrush as a way of coping. In other words - I found ways to do it.</p><p></p><p>But do it, I had to. </p><p></p><p>And that can be the difference - a sick child often doesn't have to. But with chronic illness, ANY chronic illness, you have to change mindset away from "I'm not well, I'll go to bed until I feel better," which is what we would do for flu or the measles, and change the attitude to "I don't feel well but for me that is normal, I have to get on with life as best I can."</p><p></p><p>To "soldier on" in this way is NOT denial, nor is it pretending nothing is wrong, nor is it "pulling yourslef together". But it IS getting on with your life and not letting the disease steal away even more of your life.</p><p></p><p>Don't let the disease win. Fight back by living within your limits, but living to the full as much as possible.</p><p></p><p>A young girl I knew (classmate of easy child's) was born with spina bifida. She had a low spina bifida and when small was able to walk a little with calipers. However, as she grew and got heavier, she wasn't able to keep walking and increaisngly was in her wheelchair.</p><p>I dropped in to collect my kids from school and happened to arrive during gym class. A kid was on the balance beam and this girl was in her wheelchair right beside the balance beam, talking her friend through. "One more step, now another - you can do it, I know you can!" The girl in the wheelchair had never been able to walk on the balance beam but there was nothing wistful about her, she was urging her classmate on, mentally she was on the beam with her. The spina bifida girl really knew about struggling, about trying hard and really working at something physically, and so at tat level was really able to relate to her able-bodied classmate.</p><p></p><p>In the same way, your daughter now has an understanding of other people's struggles that other girls of her age can't understand. She has a lot about herself and her own journey through this, that is worth valuing. The disease itself - horrible. Her response to it, and her inner growth - never a waste. If nothing else she has learned about her own frailty, and also her own strength. That strength is hwat she needs to continue to learn about so that she can use it to her advantage. If/when she recovers from this, she will always have that advantage, that knowledge of her inner strength, to see her through life.</p><p></p><p>Marg</p></blockquote><p></p>
[QUOTE="Marguerite, post: 259747, member: 1991"] Something just touched on by others has reminded me of something I meant to mention - this is important. For her especially, but also for you. Take vitamins, eat a healthy diet, get plenty of sleep but not too much, try to avoid slipping into sleeping during the day but being awake at night. If this means you have to look after your health (and she, hers) like an Olympic athlete, then so be it. But I agree, it is important to not get too self-absorbed into your own illness. it is so very easy to go round in ever diminishing circles and eventually fining going up your own read end, if you focus too much on yourself. I've found being a parent forced me to have to cope. I have had to find other ways to do some tasks - when difficult child 3 was a baby, I had a lot of trouble holding the spoon when feeding him, so I found a way of building up the spoon handle with foam so I could manage to hold it more easily. I had more foam on the handle of my hair brush and on my toothbrush. I eventually got an electric toothbrush as a way of coping. In other words - I found ways to do it. But do it, I had to. And that can be the difference - a sick child often doesn't have to. But with chronic illness, ANY chronic illness, you have to change mindset away from "I'm not well, I'll go to bed until I feel better," which is what we would do for flu or the measles, and change the attitude to "I don't feel well but for me that is normal, I have to get on with life as best I can." To "soldier on" in this way is NOT denial, nor is it pretending nothing is wrong, nor is it "pulling yourslef together". But it IS getting on with your life and not letting the disease steal away even more of your life. Don't let the disease win. Fight back by living within your limits, but living to the full as much as possible. A young girl I knew (classmate of easy child's) was born with spina bifida. She had a low spina bifida and when small was able to walk a little with calipers. However, as she grew and got heavier, she wasn't able to keep walking and increaisngly was in her wheelchair. I dropped in to collect my kids from school and happened to arrive during gym class. A kid was on the balance beam and this girl was in her wheelchair right beside the balance beam, talking her friend through. "One more step, now another - you can do it, I know you can!" The girl in the wheelchair had never been able to walk on the balance beam but there was nothing wistful about her, she was urging her classmate on, mentally she was on the beam with her. The spina bifida girl really knew about struggling, about trying hard and really working at something physically, and so at tat level was really able to relate to her able-bodied classmate. In the same way, your daughter now has an understanding of other people's struggles that other girls of her age can't understand. She has a lot about herself and her own journey through this, that is worth valuing. The disease itself - horrible. Her response to it, and her inner growth - never a waste. If nothing else she has learned about her own frailty, and also her own strength. That strength is hwat she needs to continue to learn about so that she can use it to her advantage. If/when she recovers from this, she will always have that advantage, that knowledge of her inner strength, to see her through life. Marg [/QUOTE]
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