The Ladder of Health

Yes, a ladder.

I started using this analogy last year and it has grown into something quite profound. I want to share it with you.
I crashed two years ago. I went to bed. I had no choice. I could barely move some days. My body gave up, but I didn't!
I listened and said, "OK, you win" I'll give you a few weeks, check some blood tests and see what happens. It had been starting to flail in January, I had actually gone to my doctor and complained of feeling more tired! Not just tired, more tired! There is a difference, as I am sure many of you will know.
So at this point if I had the ladder I would have said to myself,
"do you need to sit on your current step for a while or go down a step?"
I didn't realise that I needed to go down a step, off-load some of my responsibilities and give myself a break.
By the summer I had been falling down the steps, without realising it. Not really listening... pushing, doing what I expected myself to do; keep going, strive and you will succeed. I wanted to have a slightly interesting life. I accepted I was ill, just wanted a little piece of the social cake- a slice of life outside the home. I was careful, made sacrifices left, right and centre, but did not purposefully take that step back by my own choosing.
So by doing all this, my body made the decision. It pushed me off the ladder and told me to sit on the floor for a while. I kept getting up and it kept pushing me back off, for about 18 months in cycles of 3-6 months, I was constantly doing and flailing, doing and flailing. Stepping up the ladder too soon, only to fall back onto the floor.
Last November something happened. OH and I decided that we had to come first. Our needs above everyone else's and for the time being most of my needs over his.
I stepped back onto the floor and happily sat down. What a relief that was. To make the decision myself!
Christmas was the best we had ever had. I was ill- yes I was ill. We were smiling to jaw-breaking standards. Family and friends who didn't understand were laughably annoying. But friends and family who did understand suddenly came out of the wood-work and switched on the light. We had support we didn't know was there.
Even Olympic athletes have to step back occasionally; a ham-string injury or twisted ankle might take them out of full capacity training for a couple of weeks and who is likely to ever reach the top of the ladder? The idea is not to aim for the top, but to reach your comfortable step, sit down happily and be yourself. I reckon I'm on the first step, I've tested the second step a few times in the last couple of months and know it's not quite strong enough for me yet. I will wait until it is, as the last thing I want is to be pushed back to the floor and have to do time there again.

Smiling

I am smiling all over my face. Yesterday I found a new place. (hey-they rhyme!)
That new place is belief. Trust that I AM doing the right thing. This specialist is helping me down the right path. His ideas aren't just looney tunes.
For weeks I have been doubting, wondering if it all is a waste of money, a scam to take me only so far- just like I've taken myself in the past. 'why do I need his help, he is no different to any other ME Specialist' I have been thinking.
The difference yesterday was that I found more and more websites, more and more patient recovery stories that have used this path and very similar ones too. I also see my symptoms and reactions to these symptoms, being different.
The basic principle is that this first massive trauma, which for me was the serious virus, has an affect on the body almost like a physical PTSD. I don't have visions of when I was initially ill with that virus, neither do I particularly worry about being ill now. The unconscious brain is battling inside of me. It has PTSD. My flight and fight systems have been on red alert, DefCon 1, for the last 24 years and I had no idea. I knew that when I was quiet, when I had no responsibilities I felt better able to cope with everyday life. Surely everyone feels that? But inside me by immune system, adrenal glands, central nervous system, everything connected to automatic stress responses was over-reacting to everything. It sounds totally looney. How can anyone be in this state and not know it? Because we don't know it. It is inside. It is totally physiological. Telling any sufferer that "it is all in your head" is the worst thing you can do for an ME patient-it just makes us feel even more hopeless-do you really think we've not tried that path? So the issue now is that this is in my automatic nervous system and the unconscious brain's decisions to set it off; my brain has been telling me to keep fighting, keep fleeing, but having no idea about it doing this is the illness, is the problem. This has caused physiological damage to so many parts of my body, all the way down to the core. All the symptoms can be attributed to other issues.
Light headedness, poor body temperature regulation= low blood pressure: Diagnosed, live with it.
Aching muscles, delayed muscle exhaustion= mitochondrial dysfunction:
Diagnosed, live with it.
The list goes on and on. If the local GP, even NHS ME specialists and complementary therapists say, "Oh well, yes, you've got all these symptoms: diagnosed, live with it" you're not going to get very far on the ladder of ME Recovery.
So I am seeing improvement, by following this principle and the tools which can help retrain the nervous system, for the last two months I am becoming a different person. As ever it is slow, I need patience and as I have been ill for so many years it might take a few years still to see a significant recovery, but I know I can get better, I know I am climbing the ladder. I would smile all over my face before I started this programme and I have another new reason to do this now!