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[rootofnewt]

i try not to dwell on this, but today is also the anniversary of the day I got sick. In 1997, the 27th of September was on a Saturday. I was a live-in nanny/mother's aide. We had a slumber party planned as A, my charge, has an early August birthday--she wanted schoolfriends available. Since August is a typical vacation month in DC (and she was in England with her mom), the party was scheduled for late September.

I woke up with what felt like the worst flu of my life. I was hot and cold at once, I was in horrible pain (muscular, headache), and I was overwhelmingly exhausted. explodingcat was supposed to come over for lunch and help me prepare for the party. He was going to stay most of the evening, too, to help out. I don't remember if he came or not. A's mom took one look at me and suggested I go back to bed. There was no sense in infecting a bunch of 11-12 year old girls. She figured I'd be back up to speed by Monday.

I wasn't. In fact, I never got better. That flu never went away. In December, I was diagnosed with fibromyalgia. A few months later, CFIDS was added. I'd been photosensitive since December of 96, but was coping well with it. The first semester of my senior year is a blur--I remember very little of it. I tried to do what I could--I went out dancing as an excuse to exercise, even though I'd end up crashing for the next week. I dated. I would find myself wandering around campus not knowing what day it was, much less whether or not I had class. I showed up to classes I'd dropped and missed classes I was taking. I lost syllabi and missplaced papers. It was awful. Spring wasn't much better, but my doctors found some drugs which made it a little easier for me to cope. Needless to say, I had so many incompletes, I didn't get my diploma in May (I eventually got it in Summer of 1999).

Yes, I got to the point later in 98 where I could function. Heck, I was doing well. The combination of drugs I was on had some unsavory side effects, but I was able to work, run, swim, hike--all with bearable pain levels which responded fairly well to drugs. It was going reasonably well until a doc decided to see what would happen if he put me on Plaquenil for the photosensitivity. I was only on it for a few days in August or September of 1998, but I never really recovered. I crashed harder and faster than ever.

In March of 2000, I gave up on working. Since then, I've occasionally thought about it, but I can barely handle keeping myself clean and fed. Walks and hikes knock me on my ass. Even visiting friends takes a lot out of me, but I've decided that company is better than solitude. The physical pain is intense. I have absolutely no respite from it.

I'm so angry at this disease. I'm not sure that anger will ever go. Yes, I cope. I'm not always angry, but I do hold anger at what has happened to me. I'm angry that I'm not able to work. I'm angry that my quality of life suffers so much. I'm angry that I had to give up my plans for grad school, for the peace corps, for the foreign service. I'm angry that I can no longer add in my head. I'm angry that my husband's birthday is marred by this anniversary, though I never mention it to him directly. I'm angry that his life is impacted so heavily by this, too. I'm angry that there's no conclusive research as to the cause of these disorders and that there's no definitive cure. I'm angry that only the symptoms can be treated, yet they so rarely actually are. I'm angry that there's very little support for chronic pain patients in the US medical/iinsurance system.

I have to be angry. If I'm not, then I'll have accepted that there's absolutely nothing to be done. I'll give up.

Comments

[ladymeshel.livejournal.com]

Thank you for sharing all of that. I've known you online since early 1999 and I have never heard the whole story of how you first got sick. I'm sorry you have to live with this disease *hugs*.

[quasigeostrophy.livejournal.com]

*hugs*

[shaktiqueen.livejournal.com]

Hmmm...Until I was twenty three I was an incredibly healthy person. Then, while I was living in Tucson, I suddenly, in just over a few hours, got incredibly deathly ill. The docs diagnosed as Strep B ( I would get strep throat frequently as a kid) It took a week in the hospital and several months home on the couch before I had any semblance of strength again. And it was shortly after that when I started having what I now know are fibro flares. Plus I get sick much more frequently and seriously. What will take my friends a few days to recover from seems to take me weeks.
I have almost constant pain....alhough I don't think it is to the level of yours and fatigue is a constant companion.
I never thought about it all being related to that one really really bad virus from ten years ago.
Something to think about

[krasota.livejournal.com]

I had absolutely no sign in my blood of any sort of infection back then. My fibro/CFIDS symptoms are the same as a nasty flu virus. What I woke up with on that day is what I wake up with every day, though with some sleep stabilization, the temperature fluctuation isn't as severe as it once was.

Some folks do end up with Fibro or CFIDS after a virus, especially after EBV/mono. I'm EBV-negative. My mother is EBV-positive, so is boy.

With the exception of this year, I rarely get colds or other virii. I get sinus infections, but those directly related to my allergies, my allergic response, and the physical structure of my skull. When I do get most illnesses, I sniffle a bit and then infect my friends with a far more virulent strain of the bug. That, or their poor diets contribute to their demise. ;)

This year, I've had bad luck and ended up with Influenza A and some other stuff. On the other hand, maybe my body is swinging back in another direction and trying to stabilize.

In my experience, fibromites either catch every single bug, or they don't catch any at all. Very few are in the middle.

[chorus-of-chaos.livejournal.com]

I go through bouts of rare excellent immune system and then "catch everything that comes within 30 miles"...and I keep going back to the comment my general prac. that I saw for so long made, that he had tested me for lupus a couple times and it came back negative, which is in part what led to my fibro diagnoses...he said that while there was no conclusive research to prove it, he personally suspected that fibro was actually an undiscovered form of lupus. It wouldn't surprise me, considering I've had the rashes, allergies, etc...(but at least not allergies at your level, boy do I feel for you!!)

Hang in there...I stay pissed off about it all too...sometimes the only way to keep going is to tell reality in general to go screw itself.

[moominmuppet.livejournal.com]

In my experience, fibromites either catch every single bug, or they don't catch any at all.

I basically never get the minor stuff; colds, flus, etc. On the other hand, when I get sick, it's with "give the disease a bad name" cases -- I was that way with mono, with walking pneumonia, and with chickenpox (which I got twice).

Keeping the anger isn't a bad thing... *hugs*

[risabe.livejournal.com]

My sister has MCTD, and I think of your problem often since I am so close to someone IRL who has sort of the same thing. We've talked about you and she asks after you often.

You are always in my prayers.

[sophy.livejournal.com]

It's good not to dwell, but it's sometimes necessary for the heart and mind to remember and get angry or sad or any other emotion that wants to come up.
You seem like one of the most well-adjusted sickies I know, actually. Reading your posts helps me want to be a better sickie. ;)
*warm and gentle hugs*

[elnigma.livejournal.com]

*hugs* I didn't think a bad flu in a younger person could cause that, but it makes sense. I'm so sorry it happened to you.. you are such a nice person and I hope and pray you'll recover.

[lcohen]

i do sort of understand, but i won't go through all of the ways that asthma has limited and redefined my life--anyway, i know that your situation is much much harder.

*gentle hug*

[needlegrrl]

(hugs)

[mkay422.livejournal.com]

Sounds like life gives a hit below the belt. Hang in there! Hugs...

P.S. My brother (9 years younger than me) came in 1997 here to California to visit us and broke his neck while diving into Lake Tahoe; became a quad.
Shit happens unfortunately...

[datagoddess.livejournal.com]

*hugs*

[azhure.livejournal.com]

*hugz*

It's good not to dwell, but it's also good to vent. People seem to forget easily just how difficult life with FMS/CFIDS can be, sometimes its useful to remind them...

[dahliablue.livejournal.com]

*hugs*
Anniversaries are hard. Very hard. Your attitude is definitely inspiring to me, though. It always has been. I hope, someday, I can still keep my anger but cope better than I have the past 10 years.
.

[xiane.livejournal.com]

You're one of the most positive and energetic people I know, despite the pain and fatigue and everything else I know goes on [or I don't know, as sometimes you don't mention it at all]. I've learned that if you bring it up, it must be a *very* bad day. If being angry is what keeps you from giving up, then press on with your anger. I, for one, would never know that you carry it without being told - you never show it.

Have I told you lately that I admire you? You are the best friend one could ask for, always there to help, despite your health. You always have something bright and inspiring, or funny and cheerful to say. Many people could learn something from you.

[laverick.livejournal.com]

Though I hate to admit it anger sometimes is necessary to help you survive something that is so beyond your control. it's good to let it out sometimes or it eats away at you inside. I'm sorry for the losses and goodbyes you've been forced to make. ((hugs))

Really, I do love the strong and beautiful spirit you share here in your journal--you keep up such a wonderful attitude despite your struggles. It's inspiring.

[circumspectly.livejournal.com]

(((gentle hugs))) thanks for sharing this. stay angry, do not acquiesce.

[bbick.livejournal.com]

Good for you. Don't be complacent; be indignant. I think it's so admirable how you're surviving. And you seem to have more energy and get more done in a day than I do in a week. It's been inspirational to read about your life.

[sabethea.livejournal.com]

*hugs*

you have every right to be angry, but you're a fantastically positive person and a great inspiration to me.

i'm another person who rarely gets viruses. when i do, i know my health's improving... unfortunately, the virus regularly then makes it worse again.

[absinthea.livejournal.com]

*hugs*
If there is one thing that is unique about you its that through all this, you still charge ahead. Sure, you may be feeling crap enough to come across as a delicate little frail lass sometimes but for the most part you still tackle things head on. You say "kiss my ass" to your body feeling crappy and you don't *let* your illnesses ruin your life. More often than not, people just resign themselves to complaining and playing the part of "woe is me...for I am sick!". Im so proud of you that you are quite the opposite and aren't going to give up without a tremendous fight.

[d00k.livejournal.com]

the few times i have seen you in the past probably 5/6 years, you maintain your sense of humor and THAT is what makes you strong in my book! love you cuz!

[absinthea.livejournal.com]

Agreed...when she looses the zaniness then we shall all worry

[jkatj.livejournal.com]

Ah, geez. Happy anniversary to you!! :P

I don't have a day when my world turned, and seeing your post makes me glad that mine just snuck up on me gradually.

***hugs and love***

Thank you.

[melodiousdrone.livejournal.com]

As I sat here, thinking on the past week, and on the changes in my health, I remembered you placing a link for new friends to read, and therefore understand. Earlier this week, I overlooked it. But as I sat here this evening crying and (I admit, feeling a bit sorry for myself) I remembered the link and clicked it. One of my few beliefs is that everything happens for a reason, and it is for us to do our best to live though it. Thank you for your anger, and your strenght of character and for sharing your story with others.