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How does a partial ME/CFS recovery feel? (spoiler: it’s good!)


I'm a Wellness Life Coach with considerable experience in helping people rescue their lives from ME/Chronic Fatigue Syndrome (ME/CFS) and other types of severe fatigue. I help them move from a difficult existence to a life that feels much easier and is full of hope. Book an initial chat with me here

I’ve written before about my thoughts as to whether it’s possible to recover from ME/Chronic Fatigue Syndrome, and it continues to be a question that I’m asked often. No wonder - as we all know, the lack of any firm prognosis is one of the toughest things to live with when you’re tackling life with this condition.

So, I thought I’d explore the topic a bit more in this blog. Please bear in mind that these are my personal thoughts, based on my own first-hand experience but also on my experience of talking to many others who have recovered. We do exist! And if you haven’t already, I encourage you to look for some of the good news stories that are shared regularly on channels such as Instagram and YouTube. Check my own links page to find out more about my success story.

So, how do I define complete recovery from ME/CFS? Well, for me, it was reaching the stage where I could start living my life again with absolutely no fear of a relapse. It was being able to be properly spontaneous again and able to exercise and do all of the other things that I wanted to spend my time doing. Which included being back to performing my busy corporate job at full pelt again.

So that was clearly such a wonderful stage to get to. But the thing I want to talk about in a bit more detail here, is the fact that I was in a state of ‘high functioning partial recovery’ for a long time before that. I was formally diagnosed with ME/CFS in 2010 and I would say that by late 2014 I was back to being in a very good place. I was working full-time in my busy job, I was able to socialise and go on holidays, I could sit in busy bars or coffee shops without experiencing that horrible sensory overload. Life was starting to feel properly good again.

But I wasn’t completely better.

The only reason I was able to live that type of life again, was because of my disciplined approach to pacing and looking after myself. Anyone who met me for the first time in a work environment or perhaps socially when I was at a friend’s dinner party, wouldn’t have had a clue that I was still tackling an invisible illness. They saw the smiling, confident, sharp version of Pamela. What they didn’t see was that the only reason I was able to perform my job to such an ability was because I very very rarely made any evening plans during the week. They didn’t realise that I would have cleared my diary completely for the day following the dinner party, just to make sure I could rest and give my body the space it needed to re-calibrate after the food and energy excesses of the night before.

I wasn’t exercising at all - well, not in a ‘workout’ sense. I was able to walk for 20 or 30 minutes at a gentle pace, and I did try to do this every day. But before I was ill, I used to love pushing myself when I exercised, and it was a long time before I felt ready to do that again.

But, most of all, I still felt so wary all of the time. I was still living my life as if I was walking on eggshells, terrified about catching even a minor cold in case it gave me a relapse. And yes, I would have relapses occasionally - although they started to become fewer and further between. But each time I’d still experience that awful feeling of dread that this would be the time that would send me back to square one again.

But they never did send me back to square one. I knew all of the right things to do, and gradually as the crashes became less severe and much less frequent, I started to feel more confident.

And that led to my ‘recovery day’, which I mark as being 10th April 2017. Why do I choose that day? Well it’s because that’s the day that I decided - out of the blue - to go for a run. I was sitting watching tv with my husband one evening and not only did I feel okay, but I felt as though I actually had a surplus of energy that I had an urge to expend. So, I went for a short run (well, a slow jog really!). But I did it. And I felt fine the next day, and the next, and the next… and from that point onwards I don’t recall ever having a relapse or even close to one.

So please don’t give up hope. But also, don’t get completely hung up on achieving a full recovery. Yes, it’s great to have reached that stage - but it still felt so wonderful to have got to a partial recovery and feel as though I’d rescued my life enough to really start living again. When you’ve started at a place where you’re not sure if you’ll ever feel even remotely well again, even small improvements feel fantastic.

I wish you every success with your own life rescue, and I’m here to assist you if you think it might help.

Take care

Pamela

If you'd like to talk about how I can help you with your own ME/CFS Recovery journey please Book an initial chat with me here

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