Minor set back. Hopefully.

Yesterday I crashed. A good proper ME-crash. It came right after I had a bowel movement on the toilet (just regular, not strained) and when I entered the room all energy drained away. I wonder how that works, what systems are involved. Homeostasis. Nerves Vagus.

It took me an hour to find out that this was not about adrenals or cortisol, this was good old ME. I rested in bed that hour. It’s not uncommon for my body to lose its footing after a #2 or a shower. An hour rest will usually remedy it. Then it’s just the adrenals. (snicker: “just”)

But not yesterday. I could not sit upright after an hour, even with extra cortisol on board. Not after two hours. Not after three. So I’ve been in bed yesterday all day. Today too. Eating chicken broth. Sleeping with the cat. Thinking about knitting (Can’t actually knit). Supplementing with lots of HCL. Trying not to freak out (for this I need to talk to my husband, to put my thoughts in order. Another symptom of ME, when you lose sight of whats important and/or logical and/or probable). Luckily all these “hacks” worked.

I had a peaceful day. Two of them.

The reason I crashed is that we’ve just had two weeks of stress because the cat got terribly ill. She had to be rescued by the vet with oxygen and a drip and the works. Loosing her was suddenly a real option. I bawled my eyes out for a few days.

Then we had to snap into gear and make difficult decisions. A quick trip to a specialist far away had to be planned and carried out. And ten days after it started the cat pulled through and we could reconvalence together. We slept for two days in my bed. The cat continued sleeping for another two days and I walked around weepy and chagrined. Two hormonal symptoms easily explained and treated with mental hygiene, a walk outdoors and supplements. And understanding.

But then Saturday came and I went to the toilet and when I came out my body did kaplooyee.

I’m back to … 40% activity level I guess.
Yesterday I was out of bed for an hour twice. Today I thought about taking a shower but that’s all it’s going to be, a thought. I’m out of bed now for an hour, to write this, but I have not bothered dressing myself.

There’s a wave of despair and frustration rolling over me all day, to and fro. There are a few things I had really planned for this week that had to be wiped from the table. Sewing a dress, studying a government plan for the cabin and making a start on an engineers’ rapport on the manure plant. (Yes, that’s still going. We’ve now reached the highest court in the land and my rapport can help stop the development. I’ve reread what I wrote last Spring and what I wrote a year and a half back and both papers read like I was high or drunken. I’d love my final rapport to be more balanced.)

But the despair and frustration of all this plans aborting I can handle more easy than before, when I was ill all the time. I divert my attention. I surrender to true relaxation and feelings of safety. And I still have room in my brain for extra curricular subjects to think about. These are the things that have presented themselves the last couple of months and that have nothing to do with being ill.

They are art, illustration, printmaking and engineering. And sewing and designing knitwear. Imagining knitting parties, with puns.

But it’s scary to be back in this place. Where my body just does not have the energy. Where it’s struggling. Where I want to sink away in a mist of not-having-to-deal-with-anything. Especially not the fear that this is permanent.

I estimate I need at least another two days of absolute rest. In “the community” (i.e. http://forums.phoenixrising.me/index.php) this is called Aggressive Rest Therapy. And one of the hardest things to do is slowly transfer this into moderate activity. You have to understand that even though you feel better your body still needs the rest TREMENDOUSLY. So you have to lie down and relax, even though you feel good and want to do all the things you could not do before and you want to celebrate life and see your friends and feel the sun on your face. No. No.

You have to do more like: 15 minutes up (even “up” like this: sitting on a chair) and then lie down for 10 minutes. Flat on your back. Eyes closed. I need to give my body the opportunity to reset totally and to use all excess energy for healing. It’s all just so precious.

Doing things this way is not easy. For example, I’m at least two days from even thinking about such a schedule but I’m already up and writing this for 60 minutes, way way past the time I allotted for it, just because I can. And because I feel rebellious. It’s a treacherous trait of this disease.

I’m going back to my bed now. I’ve been reading reddit.com all day, especially the Ask Me Anything threads with Les Stroud. Mental management is the key element to surviving, he says. When you’re utterly alone and don’t see the point. That’s when you do it.

5 year plan to get back to health: reminder

A year ago I wrote this post. It’s a plan to get back to health in a slow, sure way.

I hope in the previous year I’ve done what I set out to do: mainly pacing myself and taking it step by step.

Now is the time to reassess the plan, see where I am, plan for the second year of the 5 year stretch.
That this post made it onto the blog is as big a surprise for you as it is for me. I prescheduled it as a reminder to myself. The fact that it got posted means I should take stock and assess where I am now and how I will slowly tackle the next year of my healing.

Hurry slow.
 pic by Michael & Christa Richert