Walking Through Treacle

A friend visited last week. I only met her recently, it was a meeting my husband had first (he does get out of the house more than I do!) he introduced her to my email address and we arranged to meet up for a cuppa. Our meeting was quite a surprise, I had only met one other person- coincidently this year too- who had experienced ME for as long as I. This new friend, I discovered, had been coping with ME for over 20 years too and since she had been at school. We have a lot in common there!
One thing she has introduced me too is her jokes and laughs about the condition. One thing she says is how having ME is like trying to walk through treacle! I suggested when I heard this that we might also try filling a swimming pool with custard instead of water!
It is good to be able to laugh about this. Last week when she visited with her young daughter a small collection of cartoons came along too. It was strange to remember all the jokes that had been thrown at me by the charity magazines when I had been so ill all those years ago.
So many of them show someone trying to cope in a work environment, or cooking at home, with bags under their eyes and eyelids failing to open.  Walking with lead weights tied to the ankles (I still feel like this when I'm wearing my heavier trainers or winter boots!) and arms pulled down with bags of heavy shopping- the next picture shows that the person is actually only carrying an empty bag! Others suggest that sitting on the edge of the bed in the morning, going in the bathroom, then eating breakfast is so much effort that the day is achieved by then and bedtime arrives again after only an hour. They are so true!  In some ways it is tear-inducing to see some of them. To think that there are pictures showing how we might look after hours of effort to leave the house, followed by pictures of how exhausted and painful we can feel.
Laughing at these cartoons can help sometimes, but most of them help us remember our darkest days and they will be insights of others, not our own interpretation of the illness. We also need to realise that we have to get past these images to find the truth. A lot of psychologists teach that imagining something is the first step to believing it, which then leads on to achieving the imagined and believed goal. Imagining something might be scary, then believing it is possible is actually immensely motivating. To put this into the context of ME, actively pushing and asking for physical therapy (I did small exercises every other day when I was doing nothing but lying in bed and I know they helped remove me from that position), nutritional assistance, pain relief from a regular massage or medication while it lasts, is working towards those goals. As relief begins to show itself, recovery is more believable. I started imagining recovery a long time ago, but it would be with despair. I was told constantly by doctors that recovery wasn't achievable. So where would I go from here!? Now I have a belief in recovery because by doing the things mentioned for myself, the goal of recovery doesn't seem so far away. I'm hoping, and believing, that by building up my energy so slowly and carefully, that this time recovery can become a reality. This is the point I have reached before and just gone headlong into fully energised activity. It wasn't the right thing to do, my body just wasn't ready for such a shock. I have to be aware of any signs my body gives me and listen to them mindfully.
I'm realising that I have to start leaving those cartoons behind and find my own reasons to laugh which are more in tune with a healthy life.

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.