Many of you once knew me as one of the sickest patients on here. I can still remember the days where all I could handle was the chatroom. And when I mentioned I couldn't read the forums people would get all confused as to why - because it was too much for my brain! Mostly bedridden, mostly roombound, severe MCS doubly complicating everything, only able to eat 5 ingredients, it was a daily fight for survival.
I wanted to share an update, both for those who once knew me and for the new faces since. (Hi, I don't know you but I like you!)
5 years ago I began improving with an approach involving cranial osteopathy. I knew for certain soon after the process began that it was a solid, lasting return of health, not just a remission. It has been slow, and stymied by unstable living situations (on the streets!) but I have every expectation of eventually stabilizing back to relatively normal health.
Let's start with work
At this point in the process I am well enough to work odd jobs as of June of this year. Not yet well enough to do any sort of part time regular job; my health is too unpredictable for me to be reliable. But, I can patch together enough work to be making at least a couple hundred a month, sometimes more.
This is the first money I have ever earned in my adult life. I'm now 27. I got "mild" CFS at 13 bad enough to force me to drop out of sports and most school and, after a summer of remission, became almost completely bedridden at 16. It all collapsed from there.
Dainty Gets A Guy
Besides work, another factor of life normalizing for me is I have an incredible boyfriend! And you may not believe this, but my medical issues are a mere footnote in our relationship. We're equals. He takes care of me when I'm sick, I force him to rest when he's overdoing. It works out. It's been over a year and a half now of the most caring, honest, loving connection I have ever experienced, beyond what I ever dreamed possible.
Our second date ever I collapsed on the dance floor barely able to communicate or move in the slightest, and venue had to close the event early because of me. I felt so bad. It would happen during sexy times too, and we'd have to stop. A few weeks into the relationship I collapsed on the bathroom floor unable to get up. I was crying because my body had ruined yet another beautiful moment. He comforted me, assuring me he doesn't mind. And I asked him: "Why not? Why don't you mind??"
He paused for a while to think. He didn't automatically give me a pat answer, but rather sought to articulate his genuine response.
"Because", he said finally with a smile, "Somehow, being with you feels like home."
Gosh, guys, he had me right there. He wasn't with me because of my illness, or even despite it. He was just with me, FOR ME, and my health is merely a logistical factor we have to manage in order for that to happen. He has never resented me for it in the slightest. He's AMAZING. I wish I could clone him for ya.
About that "fatigue" part...
Nowadays the exhaustion paralysis happens perhaps once every 5 months or so, instead of as often as twice a week.
Regarding PEM/P.E.N.E., here's what I wrote nearly 3 years ago about unraveling the cause of mine. At the time I wrote it, I was still dealing with it constantly. Now? I'm not sure I can even say I still have it. Yes, if I overdo, I can get fatigue that forces me to rest. But the resting state relieves it. Like needing to nap for a bit of extra recovery. My days of constant fatigue and agonizingly horrid PEM that's misery incarnate? They're over, guys!
....and other random medical stuff.
My overall medical picture is still far from stable. I have abscessed teeth causing active infections in my upper jaw, as addressing that has proved complicated. Yeast infections that never go away. Major dietary restrictions due to allergies and intolerances. Lots of nausea. G.I. episodes that send me to the ER by ambulance. Severe menstrual cramps that, if I'm lucky, narcotics make somewhat bearable.
Overdoing still has major risks that can involve my hands not working for a few days, or similar with my legs. But these days spending 3 days straight running errands and odd jobs nonstop is somehow not overdoing it, so that's a pretty massive improvement. New activities are always suspect, though. No matter how gently I introduce my body to them, sometimes they just make things go haywire.
My fibromyalgia flares maybe 4 times a year. We're talking "Holy crap I can't move everything hurts" type stuff. Like, unable to wear clothing it hurts so bad. Boyfriend can't touch me at all it hurts so bad. The rest of the time? I basically live like I don't have fibro. It's not yet completely absent from my life, but 5 years into the recovery process it rarely surfaces.
For comparison, read this old post of mine. I used to be in constant, 24/7 pain that would get worse with any pressure, e.g. lying down. Within weeks of trying this approach I began experiencing moments where I was pain-free, for the first time in 6 years.
Some notes on treatment
That last link has the most info on my treatment approach. It's cranial osteopathy, but it's a heck of a lot more than just going to a cranial osteopath. The theory of osteopathy is that the body is capable of self-healing. If it's not doing so, then there are reasons it is being blocked from doing so. The goal is simply to address anything and everything that could be interfering with healing. It's a pretty intense process.
For me, that included walking away from my religion as I knew it. Certain beliefs about self-sacrifice, joy through difficult times, "wrong" emotions, and not "being selfish" were literally preventing my body from healing.
It wasn't all emotional, either. But the two cannot be separated. My ribcage was compacted inward, preventing my lungs from expanding anywhere near as much as they should. You know what can cause that? Constant anxiety from a young age, when the body's structure is developing. If you're never taking deep, relaxed breaths then, your ribs don't get pushed outwards like they need to for expanding properly. It was a totally physical issue, originally caused, and maintained, by my anxiety. Cranial osteopathy helped unblock that, but I had to do a lot of emotional work to untangle it as well and maintain the progress.
It feels so freakin' good to breathe, now.
Wishing and hoping
I have PTSD from my years of this illness being severe. That's why I don't come around here as often. It can trigger flashbacks and spirals that are tricky to climb out of. But I'm trying, when I can.
To all of us still struggling, especially those as severely as I was: hang in there. You are not forgotten. Your story is not without hope. I wish there was more I could do to help. I wish I was strong enough to keep updated on your stories and offer my support, but forgive me - I'm not. This Thing is horrendous, and you are courageous and brave for every single day you hang in there or try something new or give yourself a break. Don't disappear on us. Don't give up on the things that make you, YOU. Please, for the love of everything, live as much as you can, be good to yourselves, and do whatever works for you.
I love you and miss you all. *hugs*
Christmas update on my life and recovery story
Blog entry posted by Dainty, Dec 25, 2016.
About the Author
Dainty became ill as a teenager and spent 7 years mostly bedridden from ME/CFS, life-threatening MCS reactions, extreme food allergies/sensitivities, cognitive impairment, fibromyalgia, episodes of temporary paralysis and various unexplained emergencies. The past 5 years she has experienced profound improvement from various treatment approaches. With homelessness and PTSD presenting as significant obstacles, she continues to pursue healing full time and find incorrigible opportunities to enjoy life.