A Personal Story

I just finished reading the CFIDS Link and wanted to respond to the question of how CFIDS impacts family members.

My name is Taffy Todd, and I’ve had CFIDS since the May of 1995. I’m one of those people who knows exactly when the illness started (with a virus), and I’ve never fully recovered. In 1994 I was able to redecorate my home and do much of the work myself. But by 1995 I was pretty useless. I’ve had some good periods when, with careful planning, I could travel with other family members, and I’m even working 12 to 15 hours a week now at a job sponsored by a vocational rehab program. My supervisor understands my illness and gives me flexibility so I never have to start work before 11:00 a.m.

This question of how CFIDS affects family members couldn’t be more timely for me. In July I went to couple’s counseling with my significant other, who has been with me for 14 years. During our first visit he said he’d had all he could take, that he couldn’t bear the thought of another 30 years of caretaking me. This man has been with me through good times and bad. We’ve been together since before I became ill, through the death of two of my children and all through my illness, and it was crushing to hear him say he could no longer deal with what CFIDS requires of him.

Bill is a wonderful man, and I hate the idea of losing him. And if we separate, I’ll have to leave my home. I live in northern Vermont and won’t be able to shovel snow in winter, and I don’t have enough money from disability and my few hours of work a week to manage alone. I’ve lost two of my children to death, and although my third is very supportive, she’s lives far away in England. My mother is turning 90 and is supportive to the best of her ability; my sister is so wrapped up in her own family problems and her fibromyalgia that she can do next to nothing to help me.

My most recent relapse lasted three years, and I spent another year climbing out of it to the point where I could consider a part-time job, But I still need to rest on the days I don’t work, so I accomplish very little at home, and Bill has to do more than his fair share. I’m on Modafinil, which I take every morning at six o’clock, improving my physical functionality enough to go to work at 11:00. Even with the medication, which helps immensely, I’ve never been able to get back to the level where I could have a normal life. I keep hoping each relapse is the last.

Since our first session of counseling, things have improved with Bill. Just communicating honestly about the toll the illness is taking on both of us helped. We’re still together two months later.

I have rambled about my situation, but I needed to tell someone that CFIDS may yet destroy a fine relationship, even though we are working to prevent that. There are many reasons to hate this illness, but having friends and loved ones turn their backs on you has to be one of the most devastating effects of CFIDS. Thanks for listening.