neuro-immune disorder, diagnosed 2011
This is the Big One, the thing that made me fully disabled and housebound. I’m not quite sure when it first developed, but I suspect it was during my fourth or fifth year of college. When I graduated and was working at an e-learning company in Florida, I would wake up, go to work, come home and sleep until 9pm, eat dinner and watch tv, then go back to bed at 11pm. I would literally sleep half the day, every day, and never have any energy. And this was while taking 60mg of a prescription stimulant for my ‘ADD’ (misdiagnosed POTS).
It’s hard to describe ME/CFS…it’s not just being tired or exhausted, it’s so far beyond that. It’s like having the flu or mononucleosis every single day…but worse. The quality of life with moderate ME/CFS is on the level of someone in the final stages of obstructive heart disease, or undergoing chemo treatment, or late-stage AIDS.
And that’s moderate cases. I’m pretty much housebound, my mother’s current record for not leaving the house is six months…and we consider ourselves lucky because ME/CFS can get so much worse than what we are currently experiencing. If you’re grateful every single day for being able to stagger over to the bathroom and wipe your own butt, something is really, really wrong.
The World Health Organization has listed ME/CFS as a neurological disease since 1969, but over the years it’s been downplayed or outright denied by the medical community.
In the past decade or so, though, medical professionals have begun to take ME/CFS seriously…Norway’s Directorate of Health even apologized in 2011 for not giving ME/CFS patients proper treatment.
However, around the same time, the terrible PACE trial that trivialized and dismissed the physiological causes and effects of the disorder was published. For four years, ME/CFS was touted as a psychological/maladaptive personality issue that could be fixed with cognitive behavioral therapy and a graduated exercise program.
I’ll have a whole page about the PACE trial and it’s aftermath at some point, but basically, in 2015, an investigative journalist from UC Berkley challenged the PACE trial…not only the results, but the methodology of the test itself. Upon further investigation by other doctors, journalists, and statisticians, the whole trial was eventually determined to be…in layman’s terms…total bullshit.
A silver lining to the terribleness of the PACE trial is an increased awareness and concern about ME/CFS among medical professionals, but it’s still a relatively unknown and frequently misdiagnosed disease.
Even the name doesn’t help…chronic fatigue syndrome sounds so trivial and minor compared to, you know, the life-ruining effects it can have. And not only can I barely pronounce myalgic encephalitis, but it’s just a bunch of medical gobbolygook.
And the listings for the symptoms on things like Wikipedia and the CDC…they make it seem so minor, like, oh, you’re just really tired for a longer bit than we expected.
It’s so much more than that.
Let’s review how ME/CFS has ruined my life, shall we? Because before I got sick (sicker, really, I’ve always had POTS), I was very active and very ambitious.
For example, I was Editor-in-Chief of my college newspaper while doing ROTC, working part-time, AND carrying a full course load…and yes, I made the Dean’s List that year as well. This was 2006-2007.
Very descriptive definitions and examples of my personal ME/CFS symptoms, using the CDC criteria as an outline:
1. The individual has had severe chronic fatigue for 6 or more consecutive months and the fatigue is not due to ongoing exertion or other medical conditions associated with fatigue (these other conditions need to be ruled out by a doctor after diagnostic tests have been conducted)
Let’s see…in 2008 I was basically on 60mg of speed and sleeping 12 hours a day. I stopped taking Vyvanse for my ‘ADD’ in 2009, when my parents, doctor, and I decided we needed to figure out what was REALLY wrong with me.
The Vyvanse, as it turns out, was just barely keeping me functional. I immediately met the criteria for full disability upon discontinuing the stimulant, and I only got worse after catching mononucleosis for the SECOND time in 2011.
So that’s, what, at least eight years of debilitating, chronic, incessant exhaustion? Not, ‘oh, I’m tired’ exhaustion from three days of all-nighters, or the good kind of exhausted feeling you get after a nice work out, the kind that gets better after you sleep.
No, this is the fatigue that permeates every cell of your body, makes your bones shake and your muscles feel like water, has you constantly being on the verge of fainting or falling, forever in a state of heightened anxiety because your body feels terrible and is sending all the pain/panic symbols in order to get you to stop and rest.
But when you do rest…nothing changes. It never goes away. It is everyday. This is my new normal.
Severe chronic fatigue. Check.
2. The fatigue significantly interferes with daily activities and work
Fully disabled and not able to work or even volunteer for things since 2009, housebound since 2012…hell, some days I can’t even walk downstairs to the kitchen. I’m too sick for stair privileges.
As for mental work…yes, I used to be a writer. A very productive one, both for work and for personal projects — editing, research, articles, marketing, blogging, fiction, non-fiction, and award-winning poetry. If it was written words, it was my wheelhouse. My one true talent.
Now, most of the time, I can barely handle leaving comments on reddit or liking things on facebook. If I write a blog post, that’s a major expansion of my mental energy and who knows how long it will be before I can express myself clearly again. And I promise you, everything here is not up to the quality I’m used to producing.
For the most part, my life has been reduced to just making it to the next day. I don’t run the household errands or keep up with the dishes like I used to…Dad has taken those over. We have a cleaning lady come over every two weeks to dust and vacuum, because Mom and I cannot. I had to give up keeping betta fish because maintaining the tanks was too physically demanding. I had to stop going to my writer’s group. I had to stop buying tickets for concerts and lectures and musicals and ballets and events because I’ve been constantly too sick to go. I can’t just go out shopping…I don’t have the energy to browse and try on things. I’ve missed four weddings and my grandfather’s funeral. I was too sick to date for two years. I wash my hair once a week and need to rest for at least two hours afterward.
Interferes with daily activity and work. Check.
3. The individual concurrently has 4 or more of the following 8 symptoms:
- post-exertion malaise lasting more than 24 hours — The most recent example of this is Pokemon Go. I ‘played’ it for a whopping three hours outside…maybe walking a half-mile in total? That landed me in bed for a week. A full week. Two days just passed out, four days just barely keeping myself washed and fed, seven days before I could even think about doing something like laundry or cleaning the hamster cage.
- unrefreshing sleep — I can’t remember the last time I woke up from sleep and felt better. Sometimes I wake up and I do feel a little better, but that just means I actually fainted instead of slept.
- significant impairment of short-term memory or concentration — I’ve read brain fog is the equivalent of suddenly losing 50 IQ points, and I believe it. I remember I was on a date in 2013, and had to drive home after the movie. I was so exhausted and brain-fogged I ran two red lights on the way home. They just didn’t register. No alcohol, 10 hours of sleep, rested all day just so I could go on the date, had a proper lunch, went to the restaurant, ate dinner, saw the movie…and was so exhausted by the end of it I could barely speak. I still thought I was ok to drive the mile home, but I wasn’t. Luckily, it was almost midnight on a weekday, and there was no one else around. But after that, I have been much stricter about my energy levels before leaving the house. Sometimes I take a shower, get pretty, grab my purse, and make it all the way to the front door before realizing I cannot actually go outside.
- muscle pain — All the time. Everyday. I used to eat painkillers like candy, but they never actually helped, so I stopped. I took lyrica as a fibromyalgia treatment, but it also made no impact, so I quit that too. I’ve just accustomed myself to it. It’s a drain on your energy and your psyche, but realistically, I’m only going to get worse. I’m going to deal without medication for as long as I possibly can. An interesting side effect of this is that I cannot get drunk — it’s like all the alcohol becomes a painkiller. I tell people I’m buzzed, but really I’m just giddy and happy because I don’t hurt anymore.
- pain in the joints without swelling or redness — I had this before and after being diagnosed with arthritis. I’d say it was annoying or frustrating, except I literally cannot remember a time I wasn’t in pain. I used to constantly wear an ankle or knee or elbow wrap, or use a heating pad or ice pack until I realized nothing was helping. Now, like the muscle pain, I just ignore it for the most part.
- headaches of a new type, pattern, or severity — I’ve had occasional migraines since I was 14 (my main triggers are bright lights and the weather/air pressure changes), but since 2011 I’ll get severe headaches that AREN’T a migraine, but barely respond to medication. They just sit heavy and hard in my head, around my skull and behind my eyes. It’s very unnerving. The first time it happened I thought I was having some kind of blood clot in my head.
- tender lymph nodes in the neck or armpit — Luckily, this only happens to me when I am sick with a ‘normal’ illness. It’s kind of how I know I actually caught some kind of virus or bug instead of just having another flare.
- a sore throat that is frequent or recurring — Actually, after cutting out gluten, dairy, and soy from my diet, and drastically reducing the number and frequency of nightshade vegetables I consume, I’ve mostly stopped eating cough drops like candy. Which is good, because now I can easily identify when I’m having a reaction to something…but this means I don’t get eight out of eight symptoms. I can’t even ace being sick.
Ok, so I definitely have this ME/CFS thing. And it’s bad. Really bad. If you felt the way I do on a daily basis, you’d go to the emergency room.
Well, what is there to do about it?
Literally, nothing. There’s no treatment. There’s no cure. There’s barely any funding or research.
Sure, there are things I can do to mitigate the effects — and lord knows I’ve tried just about everything that wouldn’t outright make me sicker — but in the end? It’s chronic. It’s lifelong. It’s not going away. This will be an indirect factor in my death, I’m sure of it. (And people with ME die an average of 20 years earlier.)
One more thing before I sign off for the day…I want you to know that it took me years, literally years, to kind of accept the fact that I’m fully disabled. As in, nope, no longer a productive member of society. Not self-sufficent, not successful, just surviving.
The other issues I was mostly handling, but the ME/CFS…this is the life-ruiner. I can’t work. I can’t live on my own. I can barely leave the house. I can not donate blood or be an organ donor. I cannot have children.
My list of ‘cannots’ is astounding. My days are constantly full of ‘can’ts’. Can’t take a shower, can’t do laundry, can’t sit at the desk, can’t write, can’t go downstairs, can’t go to the movies, can’t go outside, can’t can’t can’t.
I can’t risk it. I can’t crash. I can’t just try and push through, because one day I’ll do that, push myself beyond my limits, crash…and it will get worse. There are people with ME/CFS that are bedbound, that can’t brush their teeth or feed themselves. I live in fear of this happening to me…and it can happen at any time, really. It could happen without a crash beforehand, but it’s less likely. Or at least I like to hope so.
I’ve been very lucky, honestly. I’m blessed with intelligent, loving, supportive parents that took me back in when I was barely functioning. They got me on their health insurance and I was able to see some really great doctors and specialists. We live in a beautiful house, in a nice area, and they support pretty much everything I do…even if that’s just sleeping for three days straight.
In the end, all I can do, really, is listen to my body. Pace myself. And try and enjoy every scrap of life I have left to me.
Here’s links for further resources, reading, and research, in no particular order:
- National Alliance for Myalgic Encephalomyelitis
- National Institutes of Health – Redefining An Illness
- ME/CFS at Virology Blog
- European ME Alliance
- Huffington Post article
- Nursing In Practice article
- SheKnows article