Merritt
Part 1 of 3

I missed another friend’s bridal shower this weekend. It’s been eight days since I’ve left the second floor of my parents’ house, and it’s been three days since I’ve had a shower myself. Every time I stand up, the room spins and I instantly feel lightheaded and sweaty. A quick trip to the bathroom or the bookshelf across the room leaves me wiped out for hours. This is the worst I’ve been this year, but it’s not the worst I’ve been since getting sick nine years ago. I don’t think I’d survive feeling that bad again.

Most of my life, my real life, is lived outside the walls of my bedroom, online. I’ve made friends with cool people all over the world. We message at all hours of the day and night, which is good for me because I only sleep a couple hours at a time, in spite of how exhausted I always feel. We debate about how to stop the atrocities in Congo and the politics of drinkable water in developing countries. We share reviews of independent world music artists and follow bloggers on the front lines in Pakistan and Myanmar. I thank God for the ability to live beyond my own pain and isolation. Strange enough, sometimes I feel blessed, in spite of my narrowed circumstances.

My parents take care of me. They didn’t expect to have a 26-year-old invalid occupying the second floor, and most times I think they don’t know what to do to make up for things I have missed. My younger brother left home 6 years ago for college, then moved overseas to work for an AIDS relief organization in India. My parents would like to visit him there, but they don’t want to leave me for more than a day or two. They both work during the day which gives us all a little space. I feel guilty for the social invitations and trips they give up to take care of me. They never complain, but honestly, sometimes I wish they would.

I get very few visitors now that most of my high school friends have finished school and are working, traveling, even getting married. I still enjoy hearing from them about what they’re doing, but it’s awkward for them. I don’t think they think of me as having any real interests because I’m stuck up here in a room that looks like a shrine to my high school soccer glory days. My parents have talked about making renovations to the house and moving me downstairs, but I’m not sure I could tolerate the noise of the construction and all the odors from new paint and carpet. Sometimes Mom brings home swatches of paint and fabric that would give my room a more “adult” look, but some health problem always derails our fantasy redecorating plans. I collect world maps to hang on my walls. The borders and names of some countries seem to change faster than a lot of other things in my life.

I don’t tell my online friends I have CFS. I don’t know how they would respond. Chances are good they wouldn’t care. I have a few friends who are bipolar, one who just got diagnosed with M.S. and one who is recovered from non-Hodgkin’s lymphoma. I bet they would understand. Because they’re so spread out, it’s easy to avoid explaining why I didn’t go to college and don’t have a job. I post photos taken on my good days, when I post any at all. Luckily my cognitive problems are manageable and I can keep up with news about shared areas of interest. But I think about what it would be like to have more than my parents’ support on my really bad days. I wonder if I described what it’s like to live with CFS if other people might understand it better.

For now, I’m going to conserve my energy so I can take a real shower, hopefully tomorrow when my mother gets home from the office. Cool water running over me and clean, wet hair will feel so good.

 

 

Merritt is a composite character based on real patients’ stories, allowing us to describe a range of common experiences. Later parts of her story will be posted in the coming weeks. Please visit our site often for additions to this and other characters’ stories. We also regularly publish first-person accounts of living with CFS in our monthly enewsletter, CFIDSLink.