The Frightening Decline

a white person crying with their hand over their mouth

It’s not typical for someone to keep getting worse when they have reduced their activity as much as you have. This was the news the OT from the fatigue clinic gave me when I saw him seven weeks ago. It threw me into a spiral of fear and depression which I have yet to emerge from.

The technique that the fatigue clinic teach is called pacing, and while it isn’t a treatment, it is a very effective way of managing the symptoms of ME/CFS. In fact, it’s the only thing that is known to consistently help patients. The fact that it doesn’t seem to be helping me is very alarming.

Pacing is a way of managing your energy levels when you have ME/CFS (and can be applied to other illnesses too). It isn’t a cure, although it has helped some people to recover to a degree, and it’s unlikely to alleviate other symptoms such as the flu-like features, or headaches, or sensory sensitivity. Having said that, these things often have a tendency to be worse when energy levels are lower, so it can be of some help with them.

I’m guessing that most of my readers won’t know exactly what pacing is, so I’ll explain. First, it’s important to understand that a really really common pattern in ME/CFS patients is the ‘boom and bust’ cycle of energy. Say you have a couple of fairly bad days, so in response you rest thoroughly to help yourself to feel better. It works. One day you wake up feeling on top of the world. You leap out of bed, shower, dress, make a fancy breakfast, do a load of housework, make the dinner… and whatever else you feel like. You feel fine! You feel pretty good the next day too! But then… the next morning you wake up barely able to move, pain screaming through all your joints, with a throat like the inside of a brewer’s armpit and can only drag yourself out of bed to go to the loo. You realise that you have been rather foolish and are careful to take lots of rest even after you feel better. But, inevitably, one day you wake up feeling on top of the world and the cycle starts again.

The trouble with this is that the ‘bust’ parts of the cycle are severe and can be long-lasting. Not only that, but living this way is dangerous. You don’t learn your limits; you are constantly reacting to how you feel in the moment. It’s incredibly easy to simply go too far and trigger a full blown worsening or relapse, making your symptoms permanently worse.

Pacing, then, is a technique that helps us to break this nasty cycle, and the idea is that we remove the ‘bust’ part of it, that we stop ourselves from suffering the post-exertional malaise that is so debilitating. We start by working out what our ‘baseline’ or ‘energy envelope’ is – that is, the amount of activity we can do even on a bad day without it triggering post-exertional malaise. That is the starting point, but there’s much more to it than that.

First and most important, we have to stop before we do too much. We have to learn the early warning signs for our bodies (for me, any increase in muscle weakness or brain fog are the earliest signs) and stop as soon as we notice them. It can take a long time to work these things out, especially when we’ve never had to listen to our bodies before we became ill. Learning to follow the dictates of our bodies means that we can do more on good days but still stop before we risk ill-effects.

Regular resting is also essential. The person and the severity of the illness determine when and how and how long they rest, but it’s important to schedule rests. I rest for 1-2 minutes every half hour, and for at least half an hour three times a day.

Switching is another useful tactic. There are different types of activity, so we may be able to do something physical for a short amount of time, and then something cognitive for a while, and then go back to a physical activity. This allows both brain and body to take a break. People with worse than mild ME/CFS will probably still need to rest between activities, but switching it up is still important.

Tracking activities and symptoms is important, especially at the beginning of pacing. It’s useful to be able to divide activities up into small, manageable chunks so that if we do realise that we’re starting to overdo things we can easily stop and pick things up again later on. Sometimes, of course, we have to stop doing something and just leave it undone, which can be rather depressing. This is why it’s important to know what we can manage at a time.

We also need to know how to cope when we have done too much. Sometimes overdoing things is unavoidable. Going to a doctor’s appointment causes post-exertional malaise for me, for example, but I have to go to them. Similarly, working through what to write on my PIP form is exhausting even though I don’t have to do the actual writing, but it has to be done and the deadline is tight. So it’s important to work out how to mitigate the effects as much as possible. So after doing a big activity like either of these things, I rest for at least an hour in bed, more if I need it, and I double my resting for the next couple of days as well. I make sure that I don’t have to do anything for at least four or five days after the activity. And ensure that when I finally feel better again, I don’t celebrate by doing too much.

Finally, once you’ve got this kind of pacing and staying within your energy envelope down, you can experiment with increasing your activity, which is basically the Holy Grail of ME/CFS. It must be done with care, and slowly, and with great attention paid to your body’s signals, but some people are able to achieve a certain amount of recovery by doing this.

I have done all of this. I still do it. I’m not booming and busting any more. Yes, there are times when I have to do too much because I have no choice, or occasionally choose to do something that is beyond what I can manage without triggering post-exertional malaise. Sometimes I just make mistakes. But on the whole, I am managing to keep my symptoms relatively stable.

The problem I’m having is that instead of being able to slowly increase my activity, or even to keep it the same, I keep having to reduce it. My baseline is getting lower. It’s happening slowly, so slowly that there have been several occasions when I’ve really been convinced that I’m finally not getting worse any more, that I have found my true baseline. But every single time I have been proven wrong. The last time was only four months ago, yet looking back I can see that I’ve deteriorated significantly since then.

And so we come back to the appointment seven weeks ago, in which my OT said that the fact that I’m still getting worse is atypical. Pacing works for most people, and people who have reduced their activity as much as I have, and are no longer in the ‘boom and bust’ cycle, don’t usually get worse in his experience.

At his suggestion, I reduced my activity even more severely and doubled my rests for an entire month, but by the end of that time I had seen no improvement. I’ve just had blood tests done, and it’s possible that they might pick up something else that is going on and would explain my continuing decline. I’m hoping.

It’s terrifying to be getting worse and knowing that it isn’t normal and not knowing why. There doesn’t seem to be anything I can do about it. I’m firefighting, trying to cope with what comes up, but I just don’t know what to do next. I’m afraid that if the blood tests don’t find anything, or if they find something but dealing with it doesn’t make a difference, my OT will just shrug his shoulders and say there’s nothing to be done.

An additional note to all my readers: I recently set up a Gofundme where I’m asking for money to help me pay for a new computer. Regular readers will know that my illness means that I have a whole host of needs, and unfortunately that means that I really need something pretty expensive to replace my current computer, which is on its last legs. My income is tiny and I’ve had to spend all my savings on other things I needed – which is why I have had to ask for help. So here is the link. Please do take a look and if you can afford it and if you want to, I would be so, so grateful for anything you can give.

My gofundme for a new computer

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8 thoughts on “The Frightening Decline

      1. Blood tests don’t show much with ME especially with their range they consider normal! But hoping that they find other ways to test ME and find a cure … I have ME so in the same boat. I shared to my page! Good luck!!

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      2. Yeah, blood tests are definitely not always going to pick things up and of course there *is* no test for ME (sigh!). But you never know. If they do pick up something that is easily dealt with that would be great! Thank you so much for sharing.

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