Tuesday, May 12, 2009

International ME/CFS Awareness Day Today

On July 26, 2006 I was standing at a podium in front of a group of people defending my dissertation. On my committee sat three world renowned scholars in my field. Two of them have published books and have spoken all over the world.

After I was done with my defense there was a flurry of excitement as my committee made comments. Clearly they were impressed. Here are some of the comments: "You have an obligation to write and publish about your topic." "Would you consider teaching here?" "I think we need to consider having your topic as part of the core curriculum." "This dissertation should be published." "I would like you to be part of a book I'm writing." And so on...

It was a day of great joy, a wonderful feeling of accomplishment. I heard things that people who defend their dissertation dream of hearing. After all everyone wants to hear that their dissertation is considered worthy of publishing.

My life got really busy causing me to postpone efforts at getting published. I did a post-doctoral residency program 60 miles away at a large HMO outpatient clinic working 40+ hours, commuting, and managing a growing private practice.

In May of 2007 I was feeling bad physically. I ended up leaving the post-doc 8 weeks early because of this seemingly mysterious illness. I was losing weight. At almost 5'9 my weight dropped below 129. I was too thin, I looked grey and had dark circles under my eyes. I went through a series of medical tests to rule out cancer that runs so prominently in my family. But everything came back normal.

In Sept of 2007 I was leaning against the wall of Dr. Kliman's office. I was so weak that talking was an effort. I said to Dr. Kliman I'm scared something is really wrong and I don't want to end up in the hospital. His response was "we might have to hospitalize you to find out what is wrong." It was my first appointment with him.

On Nov 2, 2007 I was told what this illness was. I'd been referred to a rheumatologist to rule out lupus. I'd prepared a 5 page list which described my symptoms, the onset, family medical history. He read it then came into the office and somberly told me I had a "viral like illness" "a chronic fatigue like illness though the label chronic fatigue is demeaning" "You have a very serious and debilitating illness that is like AIDS but not-that is like Hep C but not."

Like many people I had a complete misunderstanding of this illness so I felt a sense of relief that I *only* had a virus and that it was chronic fatigue syndrome. Thank goodness it was *only* chronic fatigue syndrome. I'd thought I was dying my symptoms were so severe so it was a relief to find out it was *only* CFS. Little did I know that it wasn't I who was dying-only my life as well as my hopes and dreams.

So all I needed was rest right?

The doctor could tell I wasn't getting it. When his enthusiasm didn't match mine, I was confused. I remember thinking it's almost like he's telling me I had cancer. All I have is a virus. A cold is a virus and those last just a few days! What is going on? I said what do I do? He said there is no cure but I suggest you look into the clinical trials occurring at Stanford. I was puzzled. What is going on here I thought to myself. Something must have clicked inside on a deeper level because I asked the doctor: "What will my quality of life be like?" I have no idea why I asked this question but his response sobered me. "I don't know" he replied quietly. It was the quiet somber way he replied that got my attention. I still didn't know what I was in for.

By the end of December I was housebound and unable to drive more than a few miles.

This illness is not about fatigue although that is part of it. This is a case where that little story we would say "sticks and stones may break our bones but names can never hurt me" isn't true. This is where names can hurt. The name chronic fatigue syndrome is misleading because it doesn't even begin to capture the essense of this illness.

ME/CFS is a chronic debilitating multi-systemic illness. It affects the neurological, cardiovascular, immune, endocrine systems. Some people have problems standing upright, other's are completely bedridden.

I've gone from someone who was able to write a dissertation to someone who struggled to puts together to create this blog entry. I can't access words, I couldn't figure out how to get the ME/CFS badge on my blog post, I can't get at the essence of what I want to say. My writing skills are drastically different than what is written in my dissertation.

I have lost my career. I no longer have an income as I have exhausted my state disability benefits. I have been denied twice by the Social Security Administration. I've gone through all of my life savings paying out of pocket medical expenses in order to have a doctor who knows about this illness.

And then there is the emotional component. The grief of losing a life has been intense. The depression almost intolerable at times.

I feel invisible with this illness.

In 1993, Tom Hennessy, a man with ME/CFS created ME/CFS Awareness Day. He chose May 12 in honor of Florence Nightingale who was born on this day. She developed ME/CFS in her thirties and was housebound and bedbound until she died.

There is much work to be done-research is lacking and hugely underfunded. The public is misinformed. Many physicians still believe it's psychosomatic (the jerks).

In the next few weeks I'll be including links on what people can do.

I'm nursing a migraine again (another symptom of this illness) which has made it difficult to blog but I wanted to do at least something in honor of today.

Link to post here

20 comments:

Renee said...

Terri
I must tell you that your posting here is very clear in your description of this illness. I wish I had copied it to send in the email I sent to family and friends today.
I am so sorry you have lost your career but I am hoping and praying it is temporary. That you will recover and be able to use your many gifts to help the world and not just the readers who are privileged to read your blog.
Renee

Shelli said...

I find that when something is important to say, I am magically lucid enough to say it. It seems to work the same for you! Thank you for sharing your story today. There are still important things to be done.

Sue Jackson said...

Terri -

What a moving post. Thank you for sharing your story, as always. I know how much of a struggle it can be to write, but your talent at communication still comes through, in spite of CFS.

A perfect post for Awareness Day.

Sue

P.S. I had no idea Florence Nightengale had CFS!

Tammie said...

this is beautiful and moving.
thank you so much for sharing.

Toni said...

Terri,

You captured the pain and suffering of CFS in this moving piece of writing. If only the world could see it. Thank you.

linda said...

terrific post...you forgot to mention the debilitating psychological effects of CFS as well-20% commit suicide and if that's not serious, i don't know what is!!!

you wrote this post well, i would say your acceptance of this illness is very difficult for you and i speak from experience as i did the same damned thing....acceptance is the only answer in the short run and then, research research research...i tell my doc what to do, what to think, what i need, he helps....that's they way it is and yes, it makes me irritated but that rational doesn't help me any...stress makes me worse so anything that causes it, i avoid...

fascinating about florence...and i didn't even know it was me/cfs day and i belong to newsgroups...sheesh... that goes to show you what's really up with this illness and those who want to "help"... oh well, i mainly wanted to tell you that your ability to write a succinct and rational post has not flown out the window but i also know it feels like it and that's all that matters....

are you still taking valcyte?

blessings...

Jozephine said...

I'm with everyone else, your communication skills still shine through. I know that doesn't help - I don't think I'll ever come to terms with the loss of my potential - it's all still in there, but I now have not the means to make it happen.

Maybe CFS is like a thief in the night quietly robbing human society of its riches? There is much that can be done to improve an individual's situation with CFS, but until attitudes change and the stigma lifted the disease will continue to loot freely.

I'm an avid follower of your blog - don't stop.

At Home on the Rock... said...

I echo all the others, Terri.

I'm not sure exactly what your area was before you were stricken with this but I must tell you in the short time I've been following your blog, you have helped me immensely! You sum up my thoughts and put them into words, exactly as I would like to say but am unable to to do for myself since this has happened to me.

With your blog, I believe, you are helping many people all over the place. Thanks, for all that you write and pass on through here. I know what I feel like when I'm going through the CFS experiences and that you take the time to share with us, well....we all appreciate it.


The links you have provided (like the Dr. in the UK....the name escapes me but the Dr. who has been treating CFS sufferers since the early 80s) has helped me so much. I have been implementing things from her book and have noticed some improvement in my condition....I am once again hopeful.


I would like to link to your post on my blog, but was wondering if I could also post/quote your post on my blog too (giving credit to you of course). I've been working on a CFS post for my blog for days now and just can't seem to get it to come out sounding like I want to. You just sum up so beautifully and I'd like to better help some of my readers/family understand this CFS better than what I've been able to explain it to them. Thanks, Terri.

Anonymous said...

hello. you have a wonderful blog. i am wrting to urge you not to stop antivirals. improvement is excrutiatingly slow but it does happen. it can take several years.

i assume you are aware of dr. a. martin lerner's work. the cognitive function is the first to improve and it means you are on the right track. even dr. montoya at stanford is now using dr. lerner's protocols. if your illness began with a viral infectioN, you must stay on the antivirals. my email: suebackagain123@yahoo.ca

rachelcreative said...

Wonderful post. So beautifully written, so moving.

cinderkeys said...

Thanks for spelling out what having this disease means for somebody's life. The one encouraging thing about your story is that you hooked up with a doctor who actually knew something. Here's hoping that effective treatment will happen sooner than later (though it's already later).

Nicola Ries Taggart said...

Terri,
Very moving post. As someone who is NOT living with this, I can only imagine what you are going through...but you have done a beautiful job of communicating what it has meant in your life. I think of you often...when I am feeling too tired to cook or play with the kids and all I want to do is crawl in bed. And I know that I feel this way from being pregnant, which obviously has an end in sight.
I hear you are using my birth as an end-point for your current treatment. Do what you feel in your heart is right, but please make sure that your decision is not giveing up potential long-term gain for the shorter term "benefits" (whatever that may be).
Thinking of you. Praying for you. Trusting for you that all is well...and KNOWING that miracles happen everyday. May you be one of those miracles. I know it's possible.

Lara Starr said...

I gave you a shout-out here

http://cakestarr.blogspot.com/2009/05/id-like-to-thank.html

Xo,

Lara

Miss D. said...

I nominated you for a blog award!
http://never-travelled.blogspot.com/2009/05/im-wiener.html

Renee said...

Terri
I am really sorry you delteted the post you wrote yesterday. I found it informative on what your wrote about managed care and the drug companies...and I also found it very honest and heartfelt. Some days are diamonds and some days are stones...as John Denver used to say.
Please know that I am thinking of you concerning what you wrote about.

ninacolors said...

Terri,

I'm new here, but I hope you can continue your fight for SSD. It's hard, but sometimes, just for their own sick amusement, they put you thru it up until the very end. They did that to me, and there was a class action lawsuit agnst my judge

Also, hire a lawyer; it's really worth it.

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meaware said...

It would be great to see you blogging for ME/CFS Awareness again in May 2010.

Remember to sign up to the list at http://meaware.wordpress.com so we can collate a list of those who are blogging for ME/CFS Awareness this year.

Thanks

Rachel

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