13 October, 2009

It's funny what will bring me to tears.

People who are interested in "Chronic Fatigue Syndrome" (or, in the UK, Myalgic Encephalitis) and Fibromyalgia might be aware of the article published last week in Science, reporting findings that a large percentage of people with CFS were infected with a retrovirus (67% in the initial sample, compared to about 3% of healthy controls. Later research showed closer to 95% of people with CFS/ME had the virus or antibodies to it.)

I've had this information rattling around in my brain ever since. It's a vindication--all of these years I've insisted to doctors that yes, this is a real, physical, biological illness, that no, the antidepressants aren't making it go away. I hope that the test becomes widely available, and that I can take it. And then I will at least take it to my current doctor and insist that she accept that the fibromyalgia I'm asking for help with is a real disorder.

At the same time, the news is worrisome. W and I practice safer sex, in the sense that we know our sexual histories, know we didn't have any STDs, and don't have sex with anyone but each other. It's not that we engage in any especially risky behaviors, but DAMN. If I'd thought I had a retrovirus, something that could be passed on to a partner by contact with bodily fluids, I would have been a damn sight more careful. So there's that. I'm worried that I've passed this on to someone I love. I'm terrified of what it would mean for us, if she comes down with it, since right now, her ability to work full time is how we have a roof over our heads. (Yes, I do get SSI. But two times $460 a month doesn't even cover our rent.)

And there's the worry about having kids. See, when I wasn't sure whether or not it was communicable, I might have made choices like not donating blood (just in case, because the last thing someone getting a blood transfusion needs is this!). But I was still willing to risk giving birth. Because who knows, maybe it *is* triggered in part by child abuse, and that's preventable. But if it's a virus, it's a whole 'nother thing. I'm not completely ruling out having my own biological kids, but it's one more concern.

Then there's the hope, which I am more fighting against than embracing. I just don't have the energy to be disappointed, so I'm not telling myself "if they can find the cause, then they can find the cure!" Instead, I'm remembering that they discovered HIV in the early '80s, and there is still neither a cure nor a vaccine for AIDS.

So, with all of that as background, I come to the point of my post. I was reading an article about the virus in the New York Times. It's not that the article had any new information--I've been reading and re-reading the articles all weekend. But in a discussion over the controversy around whether CFS/ME is biological or psychological, they had this quotation in defense of a biological origin:
“There is a group who are young, healthy, active and engaged, and all of a sudden they are laid low by something,” Dr. Schaffner said. “Everyone tells the physicians these are people who are functional and productive, and this is totally out of character. They are frustrated and often quite disheartened. You feel that medical science hasn’t caught up with their illness yet.”
As I read it, it was like being smacked. All of a sudden, for maybe 3 seconds, I could remember. I could remember how my body felt twelve, thirteen, fifteen, twenty years ago. I could remember that strength, the activity. I could remember deciding to bike 5 miles out of my way, on a whim, because I felt like it. I could remember volunteering, and building fences, and hiking. I could remember standing up on a moving bus, without clinging to a pole in the hope of not falling down. I could remember going out dancing, spending time with friends, just doing things because they are fun, without worrying that the fun I have today will lead to intense pain and fatigue tomorrow.

Just for a few seconds, I remembered who I used to be. I could only handle it for a few seconds. One of the basic realities of my life is that some things are just too much to handle, and I can either live the life I have, or I can spend time thinking about the one I used to have.

But for those few seconds, I realized once again that this is not a disorder caused by a desire to be sick. I really liked my life a whole lot better when I was well. I haven't gained anything that comes close to making up for what has been lost.


Anonymous said...

JA, it is hard reading this. I was diagnosed with CFS when I was 25. I went through all of the tests and scepticism from others. I was treated for depresion (of course I was depressed I had lost the ability to even walk to my kitchen without collapsing!). I was in pain all the time and suffered with constant vertigo. I also developed IBS. The fatigue was so bad I felt nauseous everytime I tried to do the most basic tasks.

I'm 40 now. I had a daughter when I was 37. She is fit and healthy thank God and has more energy than you can believe. I have had unprotected sex with my partner for 15 years and she is fine too (apart from exhaustion caused by
having a toddler to deal with ). Since the birth many of my symptoms have either gone or reduced greatly. I can swim and ride my bike again! I still get a lot of pain but a new doctor has helped diagnose that as a form of arthritis which is affected by hormonal changes and immune system problems. Sometimes it lays me low but knowing it isn't psychological and having it acknowledged has helped.

After years of visiting different doctors, pills, therapy and alternative medicines my life is getting much easier. I accept that my body isn't as robust as others. What is just a bad cold for some may mean weeks of recovery for me. BUT I can walk down the street without the senior citizens seeming to sprint past me.

I remember how hard it is. But it can get better. Having children IS a possibility and something I highly recommend.

Thank you for sharing. Stay strong and be glad of the good days. I wish so much for you that one day you will look back and like me be able to think 'hey look what I can do' and shrug your shoulders about the stuff that just isn't part of your life.

My partner is a huge believer in everything happening for a reason. If there was a reason for any of this I would have to say that what you have achieved is reaching out to so many of us round the world with your writing, advice and friendship. You have an important place in the lives of people you have never even met and that is pretty special. I hope that is of some comfort.

Best wishes

Nick (HAL)

AngieNC said...

Wow, did I cry reading this! I've always differentiated FMA from CFS, because what I understand about CFS is that it involves extreme exhaustion -- but not pain. I may be wrong there. But when I tell people, "There is literally not a moment where I don't have pain *somewhere* in my body" they look at me like I'm insane, or like they pity me, or like I must be world's biggest hypochondriac.

Thankfully, I have a doctor who ALSO has FMA, so she's never questioned the things I bring to her -- the symptoms that come out of the blue, the "this med is NOT working" rants, the "this med has INSANE side-effects" rants. (In fact, she told me that people with FMA are much more chemically sensitive than others, and so what might be mildly annoying as a side effect to a normal person, is INSANE to me.) I'm blessed to have found her, I know, because there are *so many* doctors out there who are so different.

Having kids ... it's never crossed my mind that I wouldn't, but I've thought sometimes that maybe I shouldn't. My mom has this disease (or, condition, whatever); her sister does, as does one of her sister's daughters; and there's a LOT to suggest that maybe my grandma had it. So, could I pass it down? It's pretty damn likely, I think. But there's also a chance that I WON'T. I have 4 brothers - NONE of them have this. My cousin who has it? She has FIVE siblings -- 4 of them sisters - and NONE of them have it. Her daughter? Showing no signs yet. And someone asked me once that if my mom KNEW she was going to give it to me, should she have aborted me? While I have moments of not wanting to go on, the truth is that I'm glad to be alive. And I *don't* know that my daughter or son would get it. (I do, however, often find myself hoping that I'll have a boy when I get pregnant -- because the odds of him having it would be much smaller.)

I cried, too, at the part about the life you used to have. Sometimes I forget that there was a time before I was constantly in pain. I know I always got sick as a kid -- sinus infections, flu, strep throat, if it was going around, it landed on me. But I was dancer - and I was good. I wanted to be a ballerina so badly. And I was a theater-geek, and the one who choreographed all the musical numbers for our school. And twice a week for about two years I went out and line-danced with my BEST friend, and would stay on that floor till I was drenched in sweat -- and it was AMAZING. Now, I have to rest after getting groceries. And I miss work -- a job that I LOVE - probably once every two weeks, if not more. I'm pretty sure they will fire me for it eventually, at which point I don't know what I'll do.

Anyway ... you're so not alone. This disease is SHIT -- and I'm with you on the keeping myself from hoping thing.


Jigsaw Analogy said...

@Ang--given Natty's experience, I think there's pain with CFS too. When I was reading up on the retrovirus, I happened to read a list of the symptoms of CFS, and I've got most of 'em. But I still call what I have fibromyalgia, because people are more respectful of that.

When I was younger, I didn't get sick all that often. I think really, that's what helped me to stave off full fibro for so long. I can still remember my senior year of college, this feeling that I was dragging the strength out of my bones to keep functioning at the level I needed to. And I suspect that's part of why the fibro started to become unavoidable over the next years.

As for kids, I guess a big part of it is that if I knew ahead of time that there was a chance of passing this on, and had the option of not, it seems somehow wrong to pass it on. It doesn't mean I can't adopt, and it doesn't completely mean W can't just have two kids.... but I'm sad about it.

@Nick: I'm so glad that you got better after your daughter was born. I've heard that from quite a few people, that their symptoms improved after giving birth (what I've seen has been about 1/3 improve, 1/3 get worse, and 1/3 stay the same--better odds than any other treatment, though).

Kinda spacey and out of it, so that's all i'll write for now.

Anonymous said...

I can confirm that there is a lot of pain with cfs along with other physical illness and vulnerability to catch anything that may be around. In the UK at least all the various term for this illness are used interchangably. I used CFS and PVFS as those were most commonly used by the medics treating me.

Feeling for you both so much. Hugs and good thoughts.