you might want to skip this
Sep. 27th, 2003 12:33 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
rootofnewti 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.![[livejournal.com profile]](https://www.dreamwidth.org/img/external/lj-userinfo.gif)
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.
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.
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no subject
Date: 2003-09-27 12:36 pm (UTC)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*