Because none of the doctors I’ve ever seen have been able to give me a reasonable explanation for what I was going through, let alone any helpful advice or medication, like many others, I’ve taken it upon myself to find that understanding on my own. I’ve read many books and scientific articles and compared their findings and conclusions with my own experience. Many things fit like a glove, many things made some sense and others seemed to have nothing to do with me. It became clear to me that what I was reading about was experienced in many different ways by many different people, although there was also a great deal of commonality. Even for me, my experience has been different with the two incidences of this illness: I’ve only experienced gut issues this second time.
All these differences are what I believe makes it so difficult for science to come up with an answer. ME/CFS, Fibromyalgia and other energy limiting chronic illness often involve a combination of many of our complex bodily systems being in dysfunction, and the balance of how dysfunctional each of those systems are, is probably slightly different for each of us. So what do we do?
My approach has always been to try and make sense of my experience within the frame work of what is understood; to aim to tackle the underlying illness mechanisms that seem to make sense as far as they fit with my experience; to try things out and see if they have the predicted results.
But even on an individual basis this illness is hard to understand! We can’t predict everything. Sometimes we have a crash or a relapse without any idea of what we might a have done to cause it. Sometimes we start improving without any idea about which of the multiple self-help strategies we are employing is the one that is really making a difference, or which combination? It can be so frustrating when we just don’t know: we want to know how to avoid a crash, we need to know how to maintain an improvement.
I also believe that these illnesses evolve within each of our bodies differently over time. Things that might have worked early on in the illness become less effective with time, approaches that didn’t work early on in the illness might work at a later stage.
I’ve come to an acceptance that it’s just not possible to understand exactly what’s going on with my health at any given time. I can us my knowledge as a framework for my understanding to see how well certain things fit. But I also rely on my intuition. I choose my strategies based on my understanding, but also on a sense of it feeling right, or feeling good to be doing this. Although I like to record my symptoms when I try out new things (both before and after) I don’t get too hung up if I can’t make sense out of it. I commit to giving something a go for a certain amount of time, and unless I notice a definite downhill slide I aim to keep at until it should have had long enough to make a difference no matter how changeable my day to day symptoms.
Letting go of the need to understand it all, takes a pressure off. I choose something, I do my best with it, and that’s all I can do. Although I can take responsibility for aiming to do the best by myself, I know it’s not my fault if the illness outsmarts me! It’s been outsmarting many extremely accomplished scientific brains for years!
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