Managing Improvement with ME/CFS

There are many strange challenges involved in this illness and one that ranks high in the strangeness ratings is how difficult it is to manage getting better. Increases in energy are never infinite. There are still going to be limits which if surpassed will lead to a crash. When we feel better, we know our limits are wider we just don’t yet know how much wider!  The best strategy for dealing with this is to make sure that you increase activity in tiny increments and make sure each increase is sustainable before adding another. The wisdom is there, we know what we’ve got to do but it’s almost impossible to actually do it.  When we are so used to the limits to our ability, suddenly finding that you have more energy that you’re used to is intoxicating. However, much you want your improvements to be sustained it’s hard to resist all the urges of your spirit to celebrate this new found energy. We may even manage to take small tentative step towards increased activity at first but sooner or later the sense that we are OK takes over and we just go for it.

I see it as a natural expression of our life force. Our illness often forces us to reign in this life force because we just don’t have the energy to express it but it’s something that wants to be free. This urge to live our life to its full potential is a good thing. If we can harness it appropriately it will lead us to fulfilment. We don’t want to suppress it altogether. Part of the challenge of this illness is learning how to express it within the confines of our limited ability. I find it perfectly natural that it will push those boundaries whenever those limits seem to slacken. I embrace my life force, like an exuberant child that needs careful management so I can’t resent it when its exuberance breaks free.

So once again I am in a crash from overdoing it after making some substantial improvements. I choose to see that really, I’ve done quite well. It’s taken about 3 months of improved energy before I’ve overdone it sufficiently to crash for more than a day or two. As always that temptation sneaked in; my life force burst through the seams. However, I’m not going to beat myself up about this. I am human!

It’s probably pretty hard for outsiders to understand but I’m sure every ME/CFS sufferer who has ever had an improvement understands how difficult it is to keep to minimal increases in activity levels. Crashing is almost a natural part of the process. The less we can do it the better, but it happens! Now I remind myself to look after myself. I remind myself that even though I’ve been getting better I still have a challenging illness to deal with. I remind myself to pace. I decide to monitor my activity and energy levels again to get a better idea of my new baseline of sustainable activity. I remind myself that even though I’m in crash at the moment I’m still functioning better than on an average day 6 months ago. It isn’t the end of the world and I will get over this.

We don’t always get illness management right. It’s extremely difficult to do. But when we get it wrong, we must be kind to ourselves, accept ourselves as fallible human beings and try to learn from our mistakes. OK, so this is a lesson I’ve had to learn over and over again, but that’s the nature of this particular lesson.

Yes, we definitely need to be very careful about increasing our activity when we start to feel a bit better, but if you don’t get it right don’t give yourself a hard time. This is a very unique challenge that is extremely hard to overcome.

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How managing improvement with ME/CFS can be hard

4 thoughts on “Managing Improvement with ME/CFS”

  1. This is a wonderful post. You’ve described exactly how it is, and highlighted the major difficulties. I’ve described it as knowing you have a lot to buy on a limited budget, but not knowing exactly how much is in the bank. You are so right that beating yourself up for over-doing it only makes the situation much worse.It is my first inclination, I admit, but I am working on admitting that I am only human! Thanks for the post – I’ll be bookmarking it to read when I’m in a crash.

  2. You have beautifully summed up what I’m experiencing this year 🙂 There are so many variables in play, I think it’s inevitable that things go awry at times, but like you I’m taking satisfaction in the fact that in “bigger picture” terms I’m now gaining rather than losing.


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