It wasn’t hope that got me better.

I’ve been having a look at a few Chronic Fatigue Syndrome (ME/CFS) websites recently, looking for sites that might be happy to mention this blog.  Along the way, I came across CFS Unravelled, where Dan Neuffer who runs the site, has some good blogs: blogs that when you read them, you think ‘yes, that fits’.  One of the blog posts that particularly struck me was this blog  ‘Three Crucial Components’. In it, Dan Neuffer talks about what somebody needs to have a chance of recovering from ME/CFS and how when somebody suffers a real, real low that is often the driver that gives the person the determination to recover, the willingness to change and the motivation to look and look until they get the insight that makes a difference.

Now, I wouldn’t wish my relapse on my worst enemy (I still find it difficult to think about)  but it did give me the determination – well, the frustration – to do all kind of things to just get a little bit of improvement. Dan talks about recovery but, for me, I just wanted to improve. I didn’t really expect to recover. I just wanted to get back to where I had been. In fact, I think I was very suspicious of ‘hope’.  So much so that when I spotted the words ME/CFS and hope together recently, I reacted negatively and the title and idea for this blog just popped into my head.  In one of my YouTube searches, during my relapse, I saw a recovery story video. I paused and looked at it, then turned away. Watching it would have been too painful.

So much of the time, the situation felt hopeless. I felt so full of anger, frustration and grief that hope was too far away from where I was. It’s as if emotions are like a stepped pyramid where feelings of joy, happiness and delight are at the top, and feelings of grief, fear, depression and powerlessness are right at the bottom. I don’t think hope is right at the top but it’s still pretty close – maybe three or four steps down – but it was a long, long way from where I spent most of my days. Now and again, I would get a glimmer of hope – when I read Prune Harris’ blog, when I managed to walk for ten minutes – but it would quickly disappear. Part of me didn’t really trust hope: hope can be dashed, can’t it? I really didn’t want to hope, only to be disappointed again. It takes such a long time to climb up that stepped pyramid and then ‘Whoosh’ you’re at the bottom again.  And if I thought about hope, the contradictory voice in my head would question so often and so much, saying: ‘You don’t really believe in that nonsense, do you?’ that hope would just shrivel away.

Frustration was a much more familiar beast but then it’s much closer to the bottom.  So, without really thinking about it, I started to use frustration to motivate me: to look again on the internet when I’d had a bad day, to change what I was doing when I’d done slightly too much. Frustration – and anger – worked. I couldn’t stay there, I often fell back down to feeling powerless, to feeling afraid, to feeling despair, to feeling grief but it was a lot easier to climb up to anger and frustration than to reach for hope.  There’s a lot of talk these days about the power of positive thinking but I was discovering the immense force behind negative thinking. ‘I DON’T want this, I HATE this’ were frequently in my head.  I could have filled a page with different ‘I don’t want’s’ and maybe, just maybe, at the end I would have expressed myself enough that I could think about what I did want. I didn’t do this but still – without realising it – I nurtured that negative power and used it to help me.

A lot of the frustration initially was focused on feeling a little bit better for a little bit of the day and by dint of being very, very careful with my pacing, for brief moments, I was able to feel ‘okay’ enough for the brain fog to clear a little.  And in those brief moments, I had just enough drive to look a little bit more. The exhaustion would come again and the drive would disappear until the next time I managed it. And this is one of the issues with ME/CFS, drive and exhaustion aren’t natural bed fellows: if you are exhausted all the time you won’t have any drive however much you want it. Yet another reason why pacing can be so important.

I think the other thing that kept me going – apart from sheer pigheadedness – was that I had a plan, though plan is a bit of a grand word for what it was since it was no more than I’ve written here. (Have a look at my blog post:How a simple plan was a game changer for my ME/CFS.)  My plan was to try the Bruce Campbell course, then the Gupta programme and then Eden Energy Medicine.  In the end, I tried Eden Energy Medicine before the Gupta Programme so the plan changed to look like this: see Angie, my Eden Energy Medicine practitioner for six sessions;  if that doesn’t  work, see a more experienced practitioner; if that doesn’t work, look at the Gupta programme.  In my head were the thoughts: ‘If that doesn’t work, I’ll try this.’  Perhaps, subconsciously I was trying to avoid the trough of disappointment, knowing how disappointment in alternative therapies had set me back in the past, had stopped me trying new ideas.

Disappointment is a strange animal. It’s not down there at the bottom of the stepped pyramid where the emotions that can keep you stuck such as powerless and despair reside. It doesn’t look dangerous – and up to now – I wouldn’t have thought it was but it was really disappointment that made me lose my determination three or four years before; it was disappointment that in a way stopped me recovering four or so years earlier.

My plan wasn’t aimed at recovery though that is what happened. It was aimed at improvement. I knew I could improve as there were plenty of people – official and otherwise saying so – and I had my own experience to back this up. I just didn’t know by how much and how long it would take. Every time I thought about how long it might take to get back to where I had been, I plummeted down those steps to despair. Every time I thought that I didn’t know how much I could improve, I fell down into hopelessness. So I kept it vague in my head, I kept it loose. It was hope but with lots of caveats.

Hope, to me, implies that you have quite a grand plan. But I’d been burnt too many times with grand plans and big aims – much as my driven self would have liked them – I just wanted something quiet, something unassuming, something not too high a step from where I was. Then, maybe, maybe, I could sneak it through without falling into the trap of ‘it’s got to work’.

There’s another reason, I think, that hope can be so elusive if you have ME/CFS and this is to do with the fight-flight-freeze response. It’s taken six months or so but I realised the other day that my mood is intrinsically linked with the the fight-flight-freeze response. If I am tense in any way, I can’t feel happy, joyful, optimistic or hopeful. If I’m tense, I’m more likely to feel angry, afraid, guilty, lethargic or pessimistic. If you’ve ever done an adventurous but scary activity such as parachuting the feeling of euphoria comes afterwards, after the fight or flight response switches off. So, if I think back to the times I did feel a glimmer of hopefulness and optimism, it was when I had carved out a second of relaxation, when the fight-flight-freeze response was quiet. The rest of the time, just no way.

One time I did feel some of those precious glimmers of hope was during the last couple of months or so when I started to visualise myself improving. I found when I was in a relaxed state the contradictory voice wasn’t around so much so I could pretend that it was possible to improve a little. It was like these times were distant enough from my everyday life, and I was relaxed enough, that I could suspend disbelief.

But what was happening before my relapse. Why wasn’t I determined then, why wasn’t I driven to improve then? The only thing I can think of is that to manage the ME/CFS, I’d stuffed my emotions away. I remember a colleague saying to me ‘I don’t know how you manage, I don’t know how you don’t get completely frustrated’. When you feel you’ve just got to get on with it, and emotions seem to hinder this, without realising it, those emotions get put behind a wall. So all that frustrating frustration – that I was able to use during my relapse – gets dissipated. Of course, it doesn’t all get dissipated but I certainly wasn’t using the bits I did feel. Perhaps if I’d known its value, I would. Perhaps, I could have focused on each time something went wrong, and felt the power of ‘I’ve had enough of this’; ‘I’m going to do one little thing’.

What would I say to myself if I could go back in time five years or so?  Well, first, I’d have to do something about all the disappointment – and anger – I felt at everything I’d already tried (and that is another post in itself), and then……Then, I think I would say ‘Can you work out a loose plan by trying this….then this…and then this?’

I don’t think I would say to myself ‘Look for hope’ and I don’t think I would say ‘You can recover’ even though I now know it’s possible.  Instead, I’d say ‘Wouldn’t it be nice if I could watch a film comfortably; if I wasn’t ill for three days after flying…..’ Small goals, small plans. Nothing superhuman, nothing heroic.  Maybe then, maybe, I could find my way out of the catch 22 situation. To handle ME/CFS month in, month out, year in, year out, there needs to be a level of acceptance. To get better, there needs to be a level of frustration.


This post is a work in progress because, of course, I can’t go back to try my ideas out. Please help me to improve the post by emailing me, or leaving comments below or on my Facebook page.
Thank you!

Ali

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It wasn’t hope that got me better

2 Replies to “It wasn’t hope that got me better.”

  1. I love this article! This is so spot on! The importance of acceptance, to be able to cope. But a certain level of frustration that is needed, to give us the drive to recover. I totally get that! Thank you for sharing your story ! =)

    Liked by 1 person

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