Living with Chronic Fatigue Syndrome

Hi- I have had CFIDS/ME for the past decade, along with Fibromyalgia and many other health problems. I was always someone who ran instead of walked, and who rode my stationary bike at least 20 miles @ day. I love movement and when my father had a stroke that took away all his mental faculties, I thought about which thing I couldn’t live without. And my answer was…. movement!

I finally had to quit teaching when I went in to school one morning and became completely non-functional. All systems shut down and I knew that I had gone as long as I could. Oh, gosh, did I ever cry over leaving my kids. Somehow, I made it home and that was the beginning of ten years with these dds.

After all this time, you’d think that I’d be used to having such limitations on my movement, but I still grieve for
that part of me that is no longer functional. I have a very severe case of both CFIDS and FMS and have really had to work hard(don’t we always??) to deal with this new reality that still exists in my ilfe.

I watch ice skating and have to turn it off after several skaters, because I used to love to ice skate. A friend mentions how we used to ski and it kills my heart not to be able to zip up to the mtns. and ski. I was always so very athletic and now, there are many, many days that I am basically bedridden.

I know that my story’s not unique. I am so glad to find this forum, because I know that folks here understand what I’m talking about and that’s so important to me. Most of my family still doesn’t “get it.” Thankfully, my dh does, but I grieve that I can’t just hop in the car and go places with him, even for errands. This is truly grief and I haven’t been able to move past it.

I can’t handle anyone telling me that “I’m just feeling sorry for myself”, because that’s not it. I feel great sorrow for very many things happening in the world today and try as best as I can to be an “activist” online and via phone calls and mail, so that I feel like at least I’m contributing what I can. I do have major clinical depression and anxiety/panic disorder, in addition to the CFIDS/FMS. When I’ve gone off my medicines for those, I have gotten into a very, very dark, deep depression that is very different from the grief I experience over the losses from these dds.

I repeatedly disappoint my family, like when my sister was just here from LA and I couldn’t go anywhere with her. She came over and we had some good “talk” visits, but even that wears me completely out and usually puts me in bed for the next day or two or three.

Our mom has been getting progressively debilitated physically and mentally, and has fallen four times in the past month or so. She is now unable to function without hospice and/or nursing agency help. I call her, but very rarely am able to go over to visit in person, as I generally feel so much pain and “wiped out” fatigue. She tries to understand, but doesn’t really. So,I work at not taking on any guilt for my inability to go see her more often.

Well, I’m sure that I’ve said way more than you probably wanted to read. I truly need emotional support from folks who understand. I get to the point where I feel like I am unable to continue on and that’s scary.

Thanks so much for “listening.”