Saturday, June 25, 2005

Frustrations of CFIDS/CFS/ME

Glad to have met Jean (in Canada I think) through the comments at my main blog ME AND OPHELIA. Jean has suffered from CFIDS for two years. I totally identify with her post entitled Frustrations.

UPDATE: I am taking the liberty of copying the post here incase the link to Jean's blog becomes broken or the post gets deleted:


Although I try to maintain a positive outlook, there are times when I am just really pissed off & frustrated. Having this illness has changed my life completely. I am no longer the same person I was. I think the two things that are the hardest to deal with are: the isolation and the feeling of uselessness or not accomplishing anything. These are a struggle every day.

I used to be a very active person. I went out a lot with friends & family, I catered parties for friends and threw fun "do's", I travelled, I worked out regularly and was fit, I lived. Now, I find that I rarely go out, I'm lucky if I can go outside for a short walk, I'm deconditioned and I feel alone.

I have family & friends who care about me but they have lives. And these lives have continued while mine has sort have come to a standstill. Some friends no longer ask me to do things because they automatically assume that I will not be up to it. Maybe I can't do the type of socializing I was able to before, but I still want to interact with people in some way, still want to live some sort of life. I'm not dead.

I had a career, I worked hard & was appreciated for my efforts. Now that I can't work, I sometimes feel like I no longer accomplish anything of value. It has made me realize how much emphasis this society places on work, making money, success. How can an ill person be a success?

Well, I think that I am doing something really important right now. I'm trying to take care of myself the best I can. This is my full-time job. I'm believing that one day I will be better in some way and that these are my circumstances at this point in time. Maybe I will never be the same as before but I think that will be okay because no matter what type of improvement I have in the future, I will be so thankful for it. Having this illness has taught me a lot of things about myself. That I can still have hope no matter what is thrown across my path. That I am useful to those in my life - I can teach them what I'm learning every day. That I am stronger than I ever thought.

experiment in writing... 22/06/2005 21:31 Lady X


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