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Genice Insco - September 18

How do you deal with the guilt of not being able to work or play with your children or be involved with family activities like Vaccations and just around the house activities I feel like such a BIG BURDEN ON MY FAMILY


michaela riley - September 18

Hi I know how you feel. I am 29 and have had symptoms since I was 14. I was finally diagnosed last year and was told by Rhematologist that it seems I have had FM since 14. I have 3 young children 5, 2 and 4 months. I have had to get an aupair because I can not do things like run around or play with kids. I end up needing to sleep all of the time. I have finally managed to get through to my parents and sister about my illness as for years I was called hyperchondriac by them. Today I had massive breakthrough finally with my sister acknowledging my illness after GP telling me she does not know what else to try, pain clinic consultant giving up too. I have been told to claim total and permanent disability for critical illness policy for endownment by GP and Pain consultant. It breaks me to watch others play with my kids. We are about to move to get to better area and my mum called today and asked if I was ok. I said yes, no and she replied no really are u ok and I said no having very bad day and she told me that I had to be honest with them not to give up and do what I can. Even 30 minutes a day spent with kids is better than nothing. Watch tv with them or read a book on the sofa or play computer. I said to my mum that I felt guilty because I could not help husband decorate or tidy as I did not feel physically up to it and she for teh first time told me to accept it and dont worry about it as it will make me worse. What a break through. Someone told me today to ignore what people say and finally accept that what I am feeling is real grieve for my old life and do what I can do. Concentrate on the next hour not the next day. This really meant a lot. Are you family understanding?


Virg - September 18

WOW what a success story. Good for you.
I can imagine how you feel. Yes one two hours at a time is the way to go. Now that
you've got support that will ease soooo much
stress. This giving you the opportunity to accept and be grateful for things you could do.
My own and extended family are good. Actually pretty good. I do things to my own tune, and they just go along. Somedays they
forget and wonder why I'm not doing something they feel I could be doing but noone dwells on it. I am very happy for you
because having your family support is the


Virg - September 18

Hi Genice. I got wrapped up in micaela's story that I didn't acknowledge your question.
First accept you have FMS and get all the info
you can handle. Bit at a time. Start accepting
that you have FMS then start listing things you can do. It doesn't have to be a big list. I
was a single mom and took it all on until I crashed. Along with the family I didn't know what was happening. But once I realized what
my condition and capabilities were I was then
able to state to my children and family what I
was prepared to do. Playing with your children seems so important but just finding
something like a board game while youre lying
down and showing your love is a big thing.
Vacations! Your family needs education on FMS. Then you have to tell them the worst
senerio and the best you can do. It's hard but
getting thier understanding would be a big hurdle and you'll find bit by bit when the stress eases you'll have remmission periods.
Stop feeling guilty. Knowing you're loved and
you love is the key. ALL THE BEST.



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