Like, really angry. Tears and loud sobbing angry.
Want-to-throw-things-across-the-room angry. I’m surprised I haven’t broken anything, and I’m not a ‘break stuff’ kind of person.
I’ve been on a steady recovery from CFS for a long time now. Nearly every day is a win – I’m working more often, I’m doing more physical exercise, I’m eating well, and I’m finally in a position to enjoy my weekends (almost) the way I want to.
But I’m not there yet, and being almost-recovered is sometimes more frustrating than being mostly bedridden. When you’re really fucking sick, and you’re at home all the time, people don’t ask questions. They don’t probe or try to give you the ~magic~ advice that cured their aunt or brother or fifth cousin’s auntie’s chicken’s bridesmaid of ME/CFS. They leave you alone, in bed, to deal with your own shit.
But when you’re in recovery, you’re more visible. I go to the office more, I work more hours, I hang out with friends, I meet new people; but then inevitably I have to explain myself. I can take four hours sometimes to just go from waking up to physically getting out of bed. I can’t eat certain things. I can’t do anything social on weeknights. And then, whenever I mention that I can’t do things because I have Chronic Fatigue Syndrome, the SUPER HELPFUL ADVICE always starts:
“Have you tried more exercise?”
“Maybe you just need to push through it.”
“Come on, it’ll be fun!”
“Yeah I know someone that had it, and they cured it with XYZ. You should totally try that!”
“Have you tried this XYZ supplement?”
“Yeah, I get really tired too…”
I nod politely, all the while trying to contain the huge ball of burning rage that’s threatening to make my eyes bleed.
Yes. I have.
I have tried.
I’ve tried everything.
No. I’m NOT. JUST. TIRED. I’m SICK.
What people fail to realize, is that when you get an illness like CFS, and your entire life gets thrown down the toilet (without warning) in favor of being horizontal and trying not to get so depressed you want to die, you start looking – hard – for ways to get better.
I’ve read fucking everything on the internet. I’ve tried so many “cures” it’s mind-boggling. I’ve experimented with multiple drugs, I’ve tried different diets, I’ve tried “just pushing through”. I’ve been to a specialist, I’ve been given a strict diet, I take 30 fucking pills EVERY DAY. And yet, everyone assumes you’re just sitting around, being sad because you’re sick, and not doing a single fucking thing about it. Which is bullshit.
Since May 2014, I’ve done very little other than TRY TO GET BETTER. So being told how to cure myself (or treating it like something easily that’s easily cured) is really, horribly, frustratingly rude. And it hurts. It turns friends into cruel people. And most of the time they don’t even know they’re being cruel.
Lately, I’ve been feeling ready to go back to full time work (provided it’s a sedentary job – physical and mental stress from office management is likely what made me sick in the first place). My current contract work has been some of the most fulfilling work I’ve ever done in my life. I love doing what I do, and I want to be in the office every day, from 9am to 5:30pm. But there are still some days (like today) where you do everything right, but you get kicked down: I’ve eaten well all week, I’ve been getting a lot of sleep, I’ve been walking enough to feel good and slowly increase fitness without pushing myself too hard and ending up in bed for days.
But sometimes, no matter how well I do, I still get kicked in the ass, and that’s when the anger comes.
I woke up today with pain in both forearms, which used to be an everyday occurrence. I woke up tired. I woke up at 7am but it’s almost 10am now and I’m still in bed (albeit typing this on my laptop). And it hit me again: I’m still not 100% yet. And yes, being close to well is awesome, and I count my blessings daily for being in a position to be able to heal. But sometimes healing is more frustrating than just being horribly sick.
Add a 30-60 minute commute each way every day, and my potential for coping with a full day, five days per week gets lower. I want to cycle, and I’d be able to with an electric bike, but I can’t afford one until I have a solid, reliable income. I can’t get a solid, reliable income without a full time job. I can’t hold down a full time job when I need to include almost 2 hours of travel time every day.
This all kind of hit me this morning, and I feel like I’m backed into a corner, and when I feel like that, I get mad. So I got mad, then I got upset. Then I cried for a good five minutes. Because having your body taken away from you really does fucking suck when you stop trying to fix it and just think about it for a minute.
Chronic Fatigue is a fucking disability. And realizing you’re disabled
(and I can’t stress this enough)
really. fucking. sucks.
It has been an angry morning. I’m sick of being sick, I’m sick of being told how to get better, and I’m sick of being almost there.
I’m sick of seeing glimpses of what I’ll feel like when I’m recovered. I’m angry at my body for its inconsistency. I’m angry at the world for constantly minimizing my illness (”oh yeah, I totally know what that feels like, I’m sooooo tired, I’m tired all the time too, lol”, hey, guess what? FUCK YOU), and I’m angry for being sick in the fucking first place.
I’m tired, I’m angry, but I know I’ll be okay. I push this shit aside and push through life until I need to vent again.
And so the goddamn cycle continues.