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I've had M.E for years. I've always slept. I've never had much energy. But the doctors just weren't interested. I used to have a normal life,I just slept every available moment I had and then suddenly(after 30years)last September everything changed. I became Bedbound most of the time, I had to give up work,I started having pains and numbness in my arms and legs. I find it dibilitating to do anything and my husband doesn't understand. How can I convince him, any advice please?
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I'm sorry you have this, but your not alone, we're here and understand. You sound just like me. I always slept a lot. As a teenager I'd come home from school and lay down and sleep til dinner was ready. When I was 35 it started to hit me but I didn't crash for 3 more years. I tried to continue working but couldn't and I was bedridden for 3 yrs. I did everything to tell my family and husband what this was but they laughed at me. I got books, CFIDS magazines, tapes, before CD, from the association for them to listen to so experts could explain it. Nothing I did helped. They didn't read or listen to anything. I found out the more I try to explain, the less they believed me. I even asked my husband to come with me to the Dr office so he could understand, he wouldn't go. For a few years I was always telling them and they'd laugh at me. I realized the stress from trying to convince them was affecting me and keeping me in a flare up. So, I told them, I'm physically sick, its not in my head, but even if it was, I need the help and support from my family either way. Then I said, your with me or not, I can't be around you. I cut off my family and tried to at least get his help. I wound up divorcing him, it wasn't a good marriage before I got sick. I found out I can offer them ways to understand, if they choose not to, its not my problem. I have to come first and take care of myself. I also got a counselor familiar with this and saw her once a week for yrs. I was able to accept my illness and family.
Dear boni333 Thank you for your reply I'm glad to know I'm not the only one who has trouble with the family.ive come to the point now that I can't be bothered convincing them anymore, I just need to concentrate on myself now. I'm glad someone else understands. Thankyou
I'm so sorry you are bed bound now. I've had this for 28 years and the last 2 ive been house bound with having to lay down alot, in between everything i do. I take midodrine for POTS, 6 months, valacyclovir for EBV, 4 months and lots of supplements, multivitamins, probiotic, calcium/mag/d , cocunut oil in my green tea, hemp seeds. Im hoping to prevent getting worse. Have you tried any of these? Or do think yours was caused by a virus?
So sorry to hear all this. It isn't that unusual alas for loved ones to have difficulties understanding. I read it time and time again. I am luckier and have a supportive partner. He could help a bit more than he does , but in general he tries his best to understand. He has diabetes type one so does have understanding how it feels to feel shattered and unwell at times . Of course is not the same as ME, but at least he doesn't dismiss my issues and disabilities .
It is certainly not helpful when people you live with can't see you have debilitating issues you have little or no control over. It is difficult for a person to understand how another person feels when they don't have the same health issues. But they can be informed and advised to some degree. Plus surely he can see how you have suddenly deteriorated. I hope sooner rather than later, your husband can be encouraged to support you better.
Dear Janet71271. Thanks for understanding I know I read that too, that slot of marriages break up. I think he just finds it hard because it has changed so quickly. I'm trying hard to give him the time to come round.
I have had the same problems as boni and tracey
Family do not want to accept my illness even though they know what has caused it!
Marriage ended. Very rarely see any family.
I have been housebound 100% 18months and 95% bed bound.
Unless he is prepared to read up and educate himself about your condition then
it's going to be really difficult for you.
I am very fortunate that I 2 very good friends who accept me as I am.
Had many who have dropped me over the years so were not really friends.
I have learnt one thing though and it took many years... that is put yourself first...always x
Dear Maureen65552.I'm so sorry to hear that,it's so sad that people we love and who love us unconditionally,cannot look after us regardless if they understand our condition. It's very frightening this illness and it's outcome. Thank you for your reply.
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