I was having a particularly bad night of insomnia, and someone I'd known around PR for a while was offering to teach me a technique to help it. Of course I was interested - I'd already tried everything else, I was game for just about anything.
I'd always thought I was pretty good at the lifestyle management thing. I rested as much as I could, got up when the pain was too severe, and generally listened to my symptoms and lived accordingly to mitigate them. As it turned out, when someone challenged me to lay still in the dark for hours without distraction, I flipped.
The suffering was intense. He told me to let it happen. I said I had to get up. He asked why? I just had to. My body was screaming at me to do so. But my pride would not let me give up so easily on this approach. An hour slipped by, me arguing the whole time about how this is dumb and it's not working. Two hours.
"What's making the most noise?" He would periodically ask.
There were so many symptoms of various flavors in all parts of my body that it was dizzying to attempt to isolate anything. Pressure in my head. Pain everywhere. Nausea. Vertigo. Restlessness. Throbbing. Tingling. "I DON'T LIKE THIS" I would insist over and over again, as if that was the final word on the subject.
"Do you want to stop?"
I had no answer. My agony would not let me say no; my pride and desperation would not let me say yes. And so we continued. Three hours passed. Four. It all became a blur.
I don't remember the details of how that first call ended, except that I became so exhausted that at some point I realized I was falling asleep and we hung up.
Then we did it again the next night.
And the next.
Over and over and over again. 7-13 hours at a time. Despite my resistance and doubt of its effectiveness, I couldn't deny this technique was making me more aware of my health. Too aware, actually. To the point where I couldn't withstand it alone. And even with the emotional support of an empathetic presence, I had to be practically forced into engaging with the depths of my suffering.
A common pattern I'd long ago recognized was that lying down for long periods of time caused gradually increasing pain wherever my body met the bed. In the past, I managed this by rolling over to the other side, and when all my sides were too painful then I would have to get up for a while.
This approach was different. Lay there. Let it happen. Focus on releasing the pain. Let it burn through, keep yourself relaxed. Minute by minute, the pain was climbing. On the 1-10 scale it was a 7, then 8. It's okay. It kept climbing. 9. I could no longer choke back my whimpering. Let it happen. Release it. This is good.
The pain climbed higher and became blinding, I could no longer lay still, the agony was extreme. Some nights I would have to get out of bed and stand for a while, unable to let anything touch my skin in any way, screaming in agony. I think the longest it ever lasted was 10 or 15 minutes before it calmed down, and I was able to rest, and some other symptom took highest priority. And then we'd tackle that one. Then the next. Until I was again about to fall asleep and we hung up.
It's hard to describe why I stuck with it. Instinctively, the approach felt healing, despite the intense discomfort. Support was another factor - someone willing to stay present through the worst of my suffering, talking me through it, offering ideas and pressuring me to focus on acknowledging my body's complaints, comforting, and calming my nervous system. I felt like the parent of a toddler screaming 24/7 (a.k.a. my body), and just having the additional helping hand gave me renewed strength, even if neither of us had easy answers.
If memory serves correctly, within the first 2 weeks of intense daily work I was able to lay down as long as I wanted without the pain escalating to intense levels. This was a breakthrough. A massive obstacle to rest, obliterated. Within a month I began experiencing moments when I was pain-free. I had no idea this was just the beginning...
When I read threads on PR about sleep, I'm bombarded with so many thoughts that I can't write them all down. I tried various pharmaceutical approaches, natural approaches, herbs, self-discipline, lighting, and in the end what worked for me was someone virtually holding me down in bed until I drifted off, in the meantime tackling every physiological or emotional obstacle in sight. Nervous system absolutely must go parasympathetic, so no excitement is allowed. Must talk slowly. Breath slowly. Move slowly. Retrain yourself. Hours on end. I cannot tell you how stubbornly I resisted this. I absolutely hated it. Slowing down is not in my nature. But there was no other way out.
I know PWCs hate the mention of it, but there were a lot of emotional factors to work through. Breathing slowly felt like I wasn't getting enough air, and I'd have to work through that panic in order to achieve my goal. I'd always fallen asleep wound up, so doing so while relaxed felt like dying to me, which I had to come to terms with and be okay with in order to drift off. A crucial element was I'd always suppressed "negative" emotions, bottling them up, and they would also interfere with sleep unless released.
And it was only after working through all thess other things that pain medication or magnesium or muscle relaxants or melatonin or light therapy could do any good. Because my body had well established subconscious "programs" in place to resist practically all forms of gently relaxing or falling asleep. Doing so felt unsafe, and I have a terribly strong survival instinct.
Am I saying it's all emotional? No. Science has now observed through clinical studies on kangaroo care that babies' nervous systems copy their mother's with close skin-to-skin contact, their heart rate and breathing using their mothers' as a guide. Well, my guide was a mother who was constantly stressed and unable to relax. That's what I learned from even as a baby. I'd never experienced a "normal" nervous system. I have two sisters, one in her 20's with severe MS and the other a teenager with widespread food allergies, repeated pneumonia, and suspected asthma. When resting next to each other she takes 3 breaths to every one of mine in a classic chronic hyperventilation.
Am I saying that everyone can do this and recover? No. I wouldn't have been able to do it without that intense level of support, which is a rare find these days. The other thing is I had to throw out a lot of my life to do it, and a lot of people are in situations where the won't or can't afford to do that. I gave up emotionally fulfilling things that I felt driven to do, because they affected my nervous system and caused stress. I had to find a way to be okay with that. I dropped a large number of relationships because I couldn't focus on both them and on the healing process. Some friends understood - most didn't. My family didn't. And I had to find a way to be okay with that. Religious beliefs I held very dear were challenged, and I had to pick my way through how I felt, what I believed, and how my goals and convictions meshed. The very core of my identity - of being Miss Tough Nut who always helps other people, has strong faith, and can will herself into anything - had to be set aside for the time being in the name of Healing. It had to be worked through gently, respectfully, only as far as I was comfortable with, not forced aside.
All this rambling is just attempting to communicate more pieces of my journey, in hopes that someone, somewhere, might find some help from it. I can only write out bits as I am inspired to, knowing full well that tomorrow I may be away from PR for another 4 months straight as my health requires focus on other things. Or I might remain here writing more posts. I never know until that moment what is needed for healing, and cannot afford to deny myself any inch of it at this point.
Very sorry for the sloppy writing...I know it's hard to read but editing is not within the energy allowance for today.
*Hugs* and best wishes to you all seeking the journey of healing.
How it all began...
Blog entry posted by Dainty, Feb 14, 2014.
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 couple years she has experienced profound improvement from various treatment approaches. She's now tackling independence and continues to pursue healing full time.