The severe ME/CFS crash of my last few weeks has been a steep learning curve and quite the psychological sledgehammer in more than one way (not “just” because to experience a severe flare-up is never a fun thing).

Because I’ve had to learn that chronic means chronic!

With chronic, things go up and down, they ebb and flow but they don’t go away. You dial them down by managing them, pacing yourself (as I have been writing about lately), doing what you can to stabilise and of course you try out any new avenues that you think might lead to improvements but you don’t look to those things for a magic cure.

It’s not defeatist to accept this but, in its own way, can be pretty powerful…if very hard to do (not least because of the kind of denial that sometimes happens at the subconscious level; the part that never gives up on exhausting itself in the long search for a cure).

For me, it’s been a double-whammy of disappointment to have this sizeable flare-up right when it happened because I had been, I admit, looking to my “new life”, since we recently relocated, as a way to leave all that old chronicity behind. We do this sometimes, don’t we…we tell ourselves this new thing or achieved objective will magically transform that other thing once and for all, especially when stuck in the denial of the fact that to live with a chronic condition means it’s not going to go away all that simply, if at all, no matter what we change. Its status may improve, yes, but sweeping a chronic condition away like that is a pretty rare thing and its a pretty rare person that can make improvement without always having to remain mindful of the their safeguards and limitations from now, in order to hold things on that better level, which is to say it has never truly gone away.

I can see how its a trait of my autistic black and white thinking that I recently told myself that I could just draw a line under it all and start anew; that fixing one thing would fix all this and now I’m being proven wrong, and then some, because my symptoms are more severe and impossible to ignore than ever this time. The point is to try and learn something from this.

Subconsciously, I think had kidded myself that all I now needed, having started my “new” life, was to fix my hypermobile issues, with my new physio’s help, and the dysautonomic issues would magically melt away with time, voila. Then I could properly get on with my new life as a fit and active person, leaving the ghostly memory of chronic illness, and long days, weeks or years stuck in rest and recovery mode, back in the old life. Such pressure to put on these treatments too: like, along with our move, they were meant to fix everything (and such an oversimplification of what has been proven to be quite the complex condition). As a result, I hardly even mentioned ME/CFS when I first made contact with my physio (something I only realised, with a shock, when I went back to look at my original email!) and had hardly brought it up since – astonishing – though now, having missed a few sessions, I’ve been forced to bring her hurriedly right up to speed. In the long run, it makes me sound erratic but then my health is fairly erratic too!

How and why did I do that? Well, the downplay of this crucial factor was entirely subconscious, I never set out to underplay anything but I now realise that’s what I do (to the detriment of my ability to pace) whenever I’m “feeling a bit better”…as in, I distance myself from the chronic to pretend it’s simply not there or downplay it, turning to the mechanical fixes with all my gusto. I try so hard to get my life back to normal, sidelining some of the very things I know I need to be weary of overdoing and some of the others that I know will help me hold my steady, such as diligent pacing and setting more realistic expectations (including by admitting I have these issues, not denying them, to other people). It’s a mind game I play with myself, slipping away from the bigger issues, trying to disassociate myself from what I don’t want to be true…but then, don’t we all tend to do this with unpleasant health matters, whatever they may be? In the bigger picture, this is doing me no favours at all since all it ever leads to is a pattern of boom and bust. Yes, to some extent, I had to press the override button when it came to ignoring symptoms a bit, in order to push through our mammoth house move project but, in general, it’s a fool’s game to live in total denial of my condition, as though I dreamed it up (a very bad dream) and can now forget all about it…wrong!

Another factor worth mentioning is that it’s a lot easier to explain acute health issues and mechanical fixes to other people. What this means is that the part of me that was utterly core-weary of trying to explain chronic illness to other people and get them to take me seriously looked to this move as a way of making a pristine new start with the people in my new life (for instance, I made a new friend a while back…mentioned I had painful hypermobile joints but no mention to her at all about ME/CFS; talk about elephant in the room). Doing this means no more wincing as they roll their eyes or look disinterested/perplexed as I struggle to explain the what and why of some unfathomable condition they may not know an awful lot about, if anything at all. Instead, I get to say that I have this inconvenient issue with joints but am “getting it fixed” by some weekly treatment, which was always going to be far more relatable to most people than the kind of sudden ME/CFS crashes that I have, followed by the consignment to home on long periods of rest and recovery that come afterwards. I’d embraced the simplification of my conditions with both arms for a while back then but am now back to having to explain the unfathomable in the face of the usual mixed reactions.

However, yes, the new life is proving to be monumentally positive. A more stable home life, far healthier environment, much brighter and easier to care for living space, closer to family…all these things have massively increased the likelihood that my nervous system and many of my sensitivities can start to repair with time and patience. In many ways, they already are.

As I said, chronic is chronic yet the opportunity for me to stabilise that chronicity has now massively increased and I can feel it working its subtle magic…in spite of this crash. Combined with far better pacing from now on, I have every chance.

In fact, in many ways, this crash is largely to do with the many months…almost two years…of “pushing through” that it took to get to this new place: failing utterly to pace, living with much enhanced stress and strain, doing so many more physical tasks as had fallen unavoidably onto my shoulders and so inconvenient for me to now fall ill that I frequently ignored symptoms, always chopping and changing accommodations and living with mold in at least two places we stayed, also living under the constant threat of imminent disappointment if our plans fell through.

The point is, never underestimate the monumental efforts you make whenever you take anything on when you also have chronic issues on board; so always take time to appreciate and be in awe of what you just handled in the relative scheme of things, not to mention the big rest you now deserve…and which your body, in its own unsubtle fashion, is now so urgently demanding in the form of a flare-up. Your crash is the measure of just how much your body gave…and now you need to give back, at least for a while. Every crash, to a point, is like that…you embraced life, now you have to pay a far steeper price than some people can imagine, like paying for the piper, but this is apparently your lot in life. Better to know that in advance than to live in denial; it gets easier with acceptance and appreciation of your own tenacity to survive the ups and downs.

For me, this last couple of years (because our move all began with renovating my old house exactly two years ago) was a one of a kind exertion, never again to be repeated, and I should now work to loose the terror that I have done some irretrievable damage to my health. We all overdo it sometimes when we absolutely have to; the after effects will generally settle down, given time and the opportunity…

The key is to acknowledge that we really need to make that space, ideally before the crash happens but, whatever form it takes, accept it.

The point is also to consolidate what we’ve learned and move on; as is always the way with the learning curve of chronic conditions. This is how we learn what we are capable of, what our particular limits are and how high the price when we go over them…and then we adapt. Our life may feel smaller, and by necessity more controlled, than it once needed to be but, once we get the handle of how to live according to our new needs, it can expand somewhat wider again…just, in a different way. We all know people…and I certainly know someone of nigh-on 40 year’s duration…who have had to live with chronic this or that for far longer than we will ever likely have to do and they can help us to know that it is perfectly possible to make a life, though it does take adopting a certain mindset of acceptance. I’ve been living with it for twenty years now yet had still been in a fair amount of denial about it as recently as early this month…but am working hard to correct that right now.

Counting our blessings for improvements to lifestyle attained, for the better accommodations we’re now able to give to ourselves (including more rest!), the way people around us are getting far better acquainted with our new normal (because we own up to it more!) and even helping us to cope with it better, can be a very good place to start. Our chronic life becoming easier and more comfortable than it used to be can be almost as big a win as recovering altogether…I said almost…if we let it by getting more realistic with ourselves.

The point is to swallow the bitter pill quickly with a gulp and then move on with facing our particular reality because having far more realistic expectations about it (not living for some magic cure, nor applying the expectation pressure that “it will magically fix anything” to every new initiative such as moving house or starting a new treatment etc etc) can make life so much easier, going forwards, and also much less likely to deliver disappointments or unpleasant surprises along the way. You probably live in constant hope of other people understanding and accommodating you, not expecting more than you can give etc, as I do…so now how about doing some of that for ourselves!