Will
Part 1 of 3

Dear Richard,

I’m sorry I haven’t been in touch. I appreciate your calls last fall, and I understand why you stopped calling when I didn’t respond. I miss having you in my life and I hope you’ll accept my apology for being so distant. You might have heard through the grapevine that I’ve been ill. I got what I thought was the flu 18 months ago but I never got over it. Through last summer I tried keeping up a “normal” schedule but barely made it through each day, trying to manage kids, my job and the house. Krista was great, but by the time school started, we were both frustrated with how little I could reliably do. The doctors didn’t have many answers for me. They tested me for infections, MS, cancer and a bunch of other things. Most tests came back normal and while some of the medication helped me sleep better and reduced pain, most treatments had too many side effects or made other things worse. I kept hoping for a “magic bullet” and that all my bizarre symptoms would go away. Now I am beginning to accept that recovery may be a longer process and that I’ll have to make some tradeoffs every day just to do a few things.

You see, I have CFS. It’s a silly name, especially when you compare it to how I feel. In spite of what it’s called, I’ve learned that it affects every system in my body. Research has shown that my body doesn’t respond normally to things like infections, exertion, chemicals (including medications), noise, heat. The worst part of having CFS is that I can’t predict when I will have a “crash.” I’m learning how to adjust my activity to build some reserves for really important things, but often I’m faced with basic choices like whether to shower or to join Krista and the kids at the dinner table. Yes, it’s really that bad.

From all those years we worked and traveled together, you know I am strong and now I’m finding inner strengths I didn’t realize I had, even though my body fails me most of the time. I’m not writing to stir your sympathy, but I feel like I dropped out of civilization and I wanted to let you know why. I also wanted to ask for your help. I could use a call, a text, a note whenever you can manage it. I’m involved in supporting the research and advocacy organization that will find answers for people like me. I would be grateful for your contribution to SolveCFS. In this economy, nonprofits are working even harder to bridge the gaps. You can make a secure donation at www.SolveCFS.org.

I hope you and your family are well. I hope to do better at staying in touch. I’m on Facebook now since I rarely leave the house. Thanks for keeping me in your thoughts.

Best,
Will

 

 

Will is a composite character based on real patients’ stories, allowing us to describe a range of common experiences. Later parts of his 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.