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Are You Having a Major Setback?

So after months - perhaps years - of doing all the right things: moderating your exercise, eating healthily, meditating and pacing yourself, you had begun to feel you were well on your way to recovery - only to find your symptoms have returned and once again, you're struggling through the day.

While we recover from CFS, we all experience days when we feel worse again - but in this case I'm talking about a major relapse, one that can make you think that your Chronic Fatigue has started again – and that everything you’ve done to help you to manage and/or recover from your CFS has all been in vain.

This can happen if, for example, you have a virus such as Covid, or seasonal flu or any other major illness, or a deeply stressful event such as the sudden death of a loved one, for example. Even the anxieties caused by lockdown could cause your symptoms to return or worsen, even if you haven’t actually had the virus yourself.

Here is my own experience.

When I started creating my course, CFS – the Road to Recovery – I was, I would say, about 90% recovered and felt pretty good most of the time. However, at the beginning of 2020, I and other members of my family, all caught a rather nasty coughing virus, which took weeks to recover from. At the time, Covid wasn’t really being talked about as being a serious threat in the UK, but as time went on, it seemed likely that this was actually what we had had, but of course, there were no tests then, so we shall probably never know.

But I do know that well after recovering from that virus I realised that I was struggling more with my CFS symptoms. I suffered more energy crashes, triggered by the slightest thing: a busy day, walking too far, or a fitful night’s sleep, for example.

So, I had to listen to my own advice, and listen to my body very carefully. I reduced my exercise levels, and built them up again from almost zero, and was very careful about pacing and making sure I get enough rest.

So I understand how frightening and frustrating it is when your symptoms return, after things seem to have been getting better. And you can imagine that for me, who had just started to create courses and give people advice on recovering from CFS, this was a little mortifying!

But – here’s the thing. Recovery is never straight forward. It takes time, and it will sometimes feel like you’re taking one step forward and two steps back. I so understand how this feels – and some days you’ll feel like things are really progressing, and on another day, you’ll feel like you’ll never get better.

If you have suffered a serious setback in your recovery from CFS, don’t despair! You might just need to go back to Ground Zero for a while. So, if you’ve been building up your exercise to a certain point – you might have to go back to where you started the first time, and build it up again. With me, I was able to do walks of at least 20 minutes before I caught that virus. But afterwards I started to find that even 5 minutes left me exhausted for the rest of the day, with either aching muscles or brain fog.

So, I experimented, and went back to the maximum amount of walking I could do without having this negative effect. Which meant walking round my garden for two minutes to start with, and then gradually building up – about half a minute every four days – and going back again if I crashed – so eventually I was walking up the street and then round the block. I’ve gone a bit backwards and forwards, but I’m now up to about 10 minutes. A few months ago, I wouldn’t have been able to do that without the negative effects.

I did the same with my morning yoga session – building up from low level, short sessions, to longer, slightly more intense session but skipping the practice if I feel any muscular aching, or tiredness.

So, the point of this story is that no matter how bad your setback is, you can recover again and get back to the level you were at before. But you have to have patience! And, as I say in my course and elsewhere, it is of vital importance that you listen to your body, and don’t push yourself. If your body’s telling you you need to rest, then you need to rest! It’s very easy to go into denial, especially if you suddenly feel worse after months of feeling better. I have been guilty of this too: “I can’t possibly be feeling worse again – so of course I’m going to do yoga this morning!”

We’re only human!

So remember – you’re not alone in this. Setbacks are horrible – but they happen to all of us from time to time.

One further thing I should mention if your symptoms have changed or worsened, and there’s no strong reason – you should check with your doctor to make sure there’s nothing else going on.

Do feel free to comment with your own experiences in this - and have a look at my YouTube and Facebook pages for regular updates, news and advice on managing and recovering from CFS.

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