Losing Control

I’ve recently started doing some Cognitive Behavioural Therapy (CBT) with my local CFS/ME service. At my appointment recently our discussion reminded me about a major problem I have with CFS/ME – it has caused me to lose control over my life.

I’ve always been a bit of a control freak. I’d never get drunk because the idea of losing control of myself frightens me. In fact I am mystified as to why anyone wants to get drunk as most people lose control of their behaviour. That just shows how much of a control freak I am.

I keep my life and emotions under close control. In fact losing control of myself, to me, is the equivalent of ceasing to exist. The times I have lost control over myself I can count on one hand and all were due to extreme mental and or/physical stress. I do not like myself when I am not in control.

CFS/ME has lowered my tolerance thresholds. I can no longer tolerate mental and physical stress in the way that I used to. It takes much less these days to send me to the brink of losing control. Noise in particular drives me mad. Screaming children used not to bother me, but now... I am just very grateful that I don’t have any myself. Barking dogs also drive me up the wall. This is unfortunate, because we have a dog... a barking dog. And when I say barking, I mean BARKING!!! I lost my temper more in the first six months of owning our dog, than I think I ever have in my life prior to that. Just to be clear, losing my temper is the first stage of losing control of myself. Thankfully, the barking has been reduced to a minimal level. Barking sessions lasting 20-30 minutes plus are thankfully a thing of the past. But they showed me how terrified I was of losing control of myself.

Me? Barking? Never!

And why have I become so paranoid about losing control of myself? Well, apart from the fact that I’m probably wired that way, I’ve lost control of everything else. My life was going as I had planned and it was all ‘under control’. Things were working out how I intended them to. Then all of a sudden they weren’t. The ‘plan’ went out the window. I no longer had complete control over my body. It wobbled and shook and became exhausted after barely moving at all. My limbs became heavy and difficult to manoeuvre. I would suddenly collapse and fall over for no apparent reason. My brain no longer functioned correctly, things seem to connect up wrong in my head. My previously excellent memory became woolly. I was no longer able to carry on with my job. I was barely able to carry on with my life. I just existed, because that was all I had the energy for.

Up until this point very little that has happened to me has been out of my control. Yes, there have been some things inevitably, but not many. I am a planner and an organiser and a writer of lists. I know what I am doing next week, next month, and next year. And all of a sudden I didn’t. I had lost control over what was happening to me and what was happening in my life. I didn’t know whether I would be better in a week or whether it would take ten years. I had lost control.

As I’ve improved some control has come back to me. My body obeys me 99% of the time again – something for which I am truly grateful. My mind obeys 70% of the time. But most importantly of all my life is mine again. I have enough energy to do important things some of the time. And when I say important, I mean important to me personally. Like cooking. Or going out for a coffee with my husband. Or writing this. And I think that the thing that has allowed me to gain some control over my life is pacing. Doing things at a sensible pace and not using up my limited energy in one go.

I have quite a lot to say about pacing. And I will in another post. I’ve been struggling with my post about pacing for some time. It’s written, but I’m not happy with it yet, but I hope to bring you a post about the challenges and advantages of pacing in the not too distant future.