When you have a chronic illness already, the last thing that you want is to have to deal with another bug. ME/CFS effects the immune system, it seems to effect it in different ways for different people and even over the course of the illness. Previous research has come unstuck a bit in this respect until they discovered that the immune system for those in the first 3 years of the illness tends to show different abnormalities from those who have passed the 3-year mark, bunching us all together had confused the results. It’s also very likely that ME/CFS is a collection of different illnesses with similar illness mechanisms which complicates the picture further. But I digress, my point is our immune system is messed up and often in different ways.
This week I was hit by a bug. It was no surprise, I live in a small village and I’d heard there were a couple of nasty bugs going around. Although I don’t get out that much, I’m not completely isolated and I choose not to live in a bubble despite the consequences of a second layer of illness.
My usual pattern with an extra illness is that is shows no resemblance to the way a healthy person might experience it. Instead my general ME/CFS symptoms just get worse. The bottom drops out of my energy, and the pain, which I now experience pretty rarely, sets it. This is what happened the first 3 days, and then I actually had some ordinary symptoms…. I got a cold. Over the last 10 years of this illness I don’t think I even need one hand to count the times I’ve had normal symptoms like a cold. I remember one about 13 months ago, but I can’t remember the last one before that. It actually excites me somewhat, because it’s a sign that my immune system is behaving more normally than usual. Unfortunately though, any kind of extra immune activity uses a lot of energy, and when energy is in such shot supply to start with it can leave you with nothing.
If you’re familiar with my blog you’ll be aware that my usual, relatively decent well-being is only held up by a complex routine of self-help. The trouble with this is that you need energy to invest in it and when the second layer of illness hits that energy is snatched away.
The only possible response to this is to surrender, but that can be hard. You tend to become a bit of a control freak when you discover that you can have a bit of a life as long as you’re really careful with your energy and practice 101 things to optimise your well-being.
Letting go of that control is hard. My internal nag, (we all have one!) gets all wound up at the idea of surrender. ‘Get out of bed and do your T’ai chi, how are you going to get better if you let everything go?’ ‘Don’t you think you’d feel better if you did your energy exercises?’ There might be some wisdom to that voice, it’s so confusing in that moment, but it’s also a very heavy punishing voice when you just don’t have the resources to even invest in those small things. It can be even harder when the physiological changes of fighting a second illness with a compromised immune system effect your brain chemistry and your mood hits the floor along with your energy. You feel miserable and you just don’t know what to believe.
Over the years though, I’ve developed enough self-compassion to recognise that the best response in these situations is surrender. Unless the voice urging me to do something is a kind one, I choose to let it go. This week I allowed myself to surrender to the illness completely. My self-care was limited to feeding myself 3 times a day, drinking lots, diffusing essential oils and finding pleasant distraction. I’ve learned to trust that going into shut down mode and just staying relaxed about it, allows my energy to be directed towards healing; bugs pass and as soon as I do have a little energy to invest in my self-help, I know I’ll feel like doing it without having to listen to my internal nag.
For the last 3 days I’ve been doing my tai chi again, there’s still a lot of my routine that needs building back up, but I trust that it will happen as my energy improves. And with each part I add, I get a better chance of my energy improving faster.
Complete surrender, letting yourself do nothing, may not be a long-term strategy, but with complete trust it’s a fail-safe for the second layer of illness. When you trust yourself completely, your body will tell you when there’s energy left to invest in better well-being.
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