Thursday, May 28, 2009

My First Blog Post

I live a double life. By day I work full-time at a great job and appear young and healthy. By night I am someone who suffers from chronic illness, has trouble walking up a flight of stairs, and is usually too tired to do anything other than watch TV and go to bed. I know I am one of the "lucky" ones with Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) because I am able to work...though I haven't always been this functional.

I have been sick with CFIDS (also called Chronic Fatigue Syndrome) for my entire adult life. My health started to deteriorate slowly when I was 18 and got much worse from 22 to 24. When I was at my sickest, at ages 24 to 26, I was pretty much housebound. I slept 16 to 20 hours a day and could not hold a full time job. I had constant sore throats and low-grade fevers, caught everyone's cold/flu/bacterial infections regularly, was exhausted all the time and felt even worse after exercising, and just could not live a normal life. I'll talk about all my symptoms and health problems in greater detail in future posts.

Now that I am better off (though far from being completely well) I do what I can to be an advocate for all the CFS patients who are still too sick to leave their homes. For the past few years I have participated in the CFIDS Association's Lobby Days, which involved traveling to Capitol Hill in Washington, DC to meet with senators and congressmen and/or their health liaisons.

In April 2009 my husband and I traveled to the Centers for Disease Control and Prevention (CDC) in Atlanta, GA to give public testimony and comment on the CDC's 5-year strategic research plan proposal. Most recently (this week, in fact), I traveled to Washington, DC to speak at the CFS Advisory Committee's meeting at the Department of Health and Human Services (DHHS).

I've included my (slightly edited) comments from yesterday's meeting below (each person was given a maximum of five minutes to speak):
Thank you for having me.

My name is Alyson, and I flew in to be here. I am also happy to have my parents and cousin here to support me.

I am a CFS advocate and patient, and I do what I can to give a face and voice to the many CFS patients who are too ill to leave their homes. I'm 30 years old and have had CFS for my entire adult life; though I've only been officially diagnosed since 2005 because it took more than four years and four doctors to finally get diagnosed.

My original plan for today was to come and sit in on the entire advisory committee meeting, but my plans were foiled by my disease. This morning I woke up, ate breakfast, then took a five hour nap. My disease is a great frustration. This weekend my husband and I celebrated our fourth anniversary at Disneyland. The ONLY reason I survived the weekend is because my husband pushed me around in a wheelchair. I'm not going to explain how this disease has affected my marriage or quality of life right now because it will take more than five minutes.

I am here today to give you a sense of urgency. Not enough progress has been made in the education of physicians and other health care workers. The doctors I went to before finding my current one were skeptical at best and completely dismissive at worst when I proposed the possibility of my having CFS.

More needs to be done more quickly on all fronts -- educating health care professionals and the public, research on the disease including diagnosis and treatment. I've already lost my 20's; I don't want to lose my 30's. Please use your power and influence to help us move forward.

Thank you.
I'm too tired to write anything more, but I plan to write again soon (probably tomorrow)! Thanks for reading.


Fran said...

Dear Alyson: I am very proud of you for your enormous courage and finding the strength to fight for yourself and others to find a cure for CFIDS. I know how much it takes out of you just to survive from day to day. ---Love and blessings, Mom

Anonymous said...

Dear Akson, I have Fibromyalgia, and it is something like CFIDS, and I am sick all the time also. I am a little better for right now, but I have spells, and it comes back at least three or four times a year. I have been so sick, there is no word for it. I had to stop working, because I just could not stand the pain. I wish there was more people get interested in these sickness and do something about it. We need help, I can not hardly do my housework, and if I do anything it gets alot worse. I can not excise either, because the next day I am down in bed, I have had this for 26 years now. I went to doctor and doctors before they found what I had. It is very hard on my family, and my husband. People do not know how you feel. Everybody says you sure look good, but they do not know how sick we are. And I go to bed sick, and get up sick in the mornings. Nobody knows what it is like. Hang in Aktson, we got to keep trying.

krista1229 said...

Dear Alyson,
Thank you so much for being strong and being a voice and sharing. I am 31 yrs old with CFS and Fibromyalgia. I have an eight year old and 5 yr old. My husband is in the Navy and gone for months at a time. It is so hard sometimes. Hard to get anything done. Hard to get people to understand. And sometimes the hardest part is there is no real answer why we are like this and how we can fix it. I am so tired of telling my kids that mommy is too tired to do things with them. And my husband sometimes just does not understand.
I have been trying to get disability for 5 yrs now. Still waiting for another court date.
I have been dealing with this for about 10 yrs now and I was diagnosed 5 yrs ago. I also have anxiety, depression, interstitial cystitis, headaches, and allergies. I have been on all the medications and have had numerous medical tests. I am to a point now I try to go to the dr as little as possible. Sometimes dealing with and trying to feel better is exhausting.
Stay srong and keep your voice loud and well heard. You are needed.
Thank you

alyson said...

Thank you for sharing your stories with me. Stay strong!