They say you shouldn’t blog when you’re angry. And I’m angry. Probably mostly from the amount of Ritalin I’ve taken today, but also a lot of built up anger. Built up over years.
I need you people, my family, to understand something. And it seems like, with one exception, you don’t.
What I need you to understand, and fully comprehend, and ACCEPT, is that I’m really, really sick. And I didn’t ask to be this way, nor do I want to be this way. I’m doing everything I can think of or learn of to get better. I wouldn’t be shooting a quart of coffee up my ass every day if I wasn’t trying my best to get better.
But I don’t feel like you really understand this. So here it is, plain and simple:
You know how you feel when you have the flu, the really bad flu, where you’re in bed for two weeks and it’s a huge effort just to get up to go to the bathroom, and you’re so tired you don’t even feel like watching TV? And you have a constant headache, and fevers & chills & sweats, and you just plain ol’ ache in every bone & muscle of your body, and nothing helps it feel better? You just want to lay there and not move at all because you’re so tired?
Can you remember being that sick?
That is how I feel every damn day. Some days are a little better, in that there’s a little tiny bit less pain, or a little tiny bit less total exhaustion, and some days are worse, where the pain takes over and is so excruciating I can barely stand it, and I’m so tired, so physically exhausted, that it’s an effort to even breathe.
Every. Damn. Day.
The docs give me all these meds to try to make it better, but they help only a little bit. My adrenal glands are burned out.
On days when I just HAVE to do something important, like go to the grocery store, there are meds for that: Nuvigil, a drug used to combat narcolepsy, and Ritalin, which acts like speed in the body of someone who doesn’t have ADD. I hate them. I hate taking them. They make me feel wound up and ache even worse, make me agitated and emotional and generally a wreck, but they do keep me awake, for a little while, and moving, as they flood my body with something, god knows what, to get it going. To get it to burn the little tiny bit of cellular energy I have managed to store up after days of doing nothing at all but laying around feeling like I’m too tired to move.
The other down side of these stimulant drugs is that they give me the very false sense of being able to do things, to move around and be active, go shopping, or drive, or go camping once in a blue moon, or clean my room. But this is a false sense: when the drugs wear off I crash, hard, like a car going full speed into a brick wall. My body just quits.
And then there’s the payback. See, one of the distinguishing features of Chronic Fatigue Syndrome (CFS), is that exertion causes a worsening of symptoms – a worsening of exhaustion & pain – that lasts days, weeks, sometimes months. A flare.
So here’s the thing. I feel as if, despite my being ill all these years, that I am being BLAMED for being sick, for feeling like crap. BLAMED for being too ill to go somewhere, or it taking me 5 hours to make a round trip to home because I have to lay down and take a rest once I get there.
My mom lays in a hospital bed and reports being short of breath, being weak, and we all listen and are concerned.
I mention being really tired, and how it’s going to take another dose of Ritalin to keep me going (which I’m not supposed to take at the same time as Nuvigil, BTW, but desperate times call for desperate measures) and suddenly I’m accused of laying a guilt trip on people.
WTF? Sorry, folks, but I just don’t get it. She’s sick, we all listen and commiserate. I’m sick, and I feel like no one believes me.
Maybe it’s the Asperger’s in me. Don’t know.
But what I need you all to know, and understand, is that I’m still fucking sick as hell, and instead of blaming me for missing things, and laying a huge guilt trip on me about that, or acting like I’m just goofing off, when it takes me a long time to get something done, I need you to listen when I say I’m tired, or I have a migraine, or I just can’t do any more, and understand that I don’t want to be saying that, that I want more than anything in the world to be well and full of energy.
“Whatever doesn’t kill you makes you stronger.”
Right. Well, this damn CFS, Fibromyalgia, Lyme, Epstein-Barr, etc., hasn’t killed me. What it has done is make me strong enough that I at times, with the dubious help of Nuvigil and Ritalin and caffeine, FORCE myself to do things that need to be done. That HAVE to be done.
And you see me doing that and think, gosh, she looks well, and she must be doing better. And I am doing a little better, since starting the coffee treatment and stopping the damned florinef. But the word “little” is the key. Instead of spending every moment of the day in bed, I can force myself to get up, occasionally, and do things. That doesn’t mean I feel well. In fact it virtually always means I feel worse.
And it means I’m going to feel worse for days… weeks… or maybe months, depending on how hard I’ve been pushing myself.
Frankly, I’m terrified of what is to come after the last two weeks, of taking those wretched meds nearly every day, taking more than I’m supposed to take, DOING more than my body should be doing.
There’s going to be hell to pay. For every moment I’m up and taking care of something, and driving myself to keep going, there’s going to be hell, and it’s going to last a long time.
Because I’m sick, family, and it’s time you understood it and stopped treating me like I’m just lazy or something.