Tuesday, August 18, 2009

Hoping to be a Human Guinea Pig

Disclaimer: My brain fog is acting up today, so I can't remember what I've already said about the following topic (and I'm mentally too tired to read through my blog to find out).

I'm really excited because I'm getting closer to being able to participate in worthwhile CFS research. I use the term "worthwhile" because there is so much junk CFS research out there. The more scientists know about this disease, the more likely they will be able to come up with some answers.

I've received the informed consent documents from both the Georgetown study and the University of Illinois at Chicago study.

I spoke with the Georgetown representative today and the next step is to schedule my visit to Washington, DC. The rep is supposed to email or call me later this week with available dates.

My next step in the UIChicago study is to have a phone interview. They'll call me after they receive my signed informed consent documents.

Lately I've found myself wishing more often that I were well. I've also been feeling a bit resentful toward my disease. This weekend in North Dakota was particularly bittersweet. I was able to see my family (and especially my nieces), but I spent so much time sleeping or restricting my activities that I felt left out. And that's another thing. I've been feeling left out an awful lot lately.

I think I so badly want to participate in CFS research is because I want to do my part to find a cure (or at least a treatment) for CFIDS. My reasons are selfish; I am getting desperate for some relief.

I've been sick for my entire adult life. Can't a girl get a break?!

Today's Activities: work. Today's Most Annoying Symptoms: exhaustion, headache, low fever, sore throat, achy body, brain fog.

Mood (10 is best): 6
Energy (10 is best): 4
Physical Discomfort (10 is worst): 6


cinderkeys said...

Ah, very cool. So you know for sure they're not going to try to make you think good thoughts and exercise more?

Jo said...

Chronic illness is very isolating. I think it's one of the worst features of CFS. I often feel like a child that's been sent to bed early.

perpetualspiral said...

Hey, I'm so happy for you that you got into the studies! Looking forward to reading how that goes for you. (It would also make interesting reading for our newsletter if you are still interested in writing articles :D) Good luck to you, and I really really really hope one or both trials make you feel a whole lot better!

cfswarrior said...

I love your disclaimer!

I'll be interested in hearing how the studies go for you. It's wonderful you are going to participate.

alyson said...

cinderkeys - Ha! I love your comment. That kind of research might actually inspire me to run (away as fast I could).

I hear you, Jo.

perpetualspiral - Thanks, but I'm not officially in the study yet...I'll consider it official when they actually schedule me. Cross your figers for me! Unfortunately, neither study is a drug trial. They pretty much just involve giving bodily fluids. By the way, I haven't forgotten about writing the article about my new treatment plan. It's just taking a lot more mental energy than I thought it would...

cfswarrior - I give you all the credit! If you hadn't posted it on your blog, I wouldn't have known about it. Thank you.