Yesterday, I had cause to trawl back through half a lifetime’s worth of photos looking for pictures of a family member for her wake which is coming up. It was an easy task as it merely involved lying back here with my finger on the scroll button of my Flickr account as I scanned back across the years in reverse-chronological order. Times like this, I wish I made better use of tags but it was a harmless enough errand to be on, at a time when I am utterly crashed out with the worst ME flare I’ve had in years and so I cant manage much more than the easiest or more sedentary of tasks.

I’m weeks into this flare-up now and its no laughing matter; in fact, I had forgotten just how severe and brutal ME can be from the inside out when it’s flare-ups last more than a few days and this has been no pony ride…at all. My exercise intolerance now applies to the “exercise” of standing up to boil the kettle or trying to rearrange some cushions where I lie, in fact the slightest thing buckles my knees with weariness, even largely mental tasks such as this coming at a price (but sometimes I just have to write to have outlet). Until it happens again, and then you remember that ME also means severe inexplicable pain, means orthostatic intolerance, means exhausted as soon as you wake up in the morning, means giving-up so many ordinary things that you really want to do because they are all suddenly on the same scale as climbing Mount Everest, means too exhausted to hold a book or the concentration to read it, the true recollection of what it is really like (like childbirth) remains comfortingly misted from view…until next time it flares.

Usually, my flares last maybe a week or ten days; however, this has gone on for about 6 weeks now and isn’t really getting any better, at times worse than it’s ever been and all I have to fall back on are the protocols that help you to get through it. So I’m back to the protocol of pacing, of not expecting too much and of withdrawing all attempts at exercise while I sit…or mostly lie…it out, back to summoning all my tolerance and fortitude and hope.

It was the pathos of looking back over all my most recent years, in this picture display of photos, that really got to me yesterday. In the end, it got to me so much I found myself closing my eyes to skip out whole swathes of my chronology where I knew there would be none of the pictures I was looking for. Because, for all I have had chronic illness for nigh on 18 years now, there was an obvious progression towards health, radiance and vitality in this (remember, reverse) picture display. Like watching a person come back to life again, gain colour in their cheeks, acquire briskness, stand taller, appear more resilient, I watched a version of what I hold out for, in vain, happening to me if only I could recover better health, turned pathetic (as in, full of pathos) because it was obvious that the reverse was true; I am not getting any better with time, in spite of the occasional burst of temporary improvement, as the decline is evident and this illness is really taking its pound of flesh from me. This isn’t morbidity, its “what is” and something I have to accept if I am to hold a baseline of reality and not live in a state of constant denial and bitter disappointment.

For all I was still dealing with bouts of ME and non-stop Fibromyalgia, and all the rest of the complications, over all those years in the pictures, I managed to live a pretty active, joy-filled and varied family life with outings and travel and daily walks with my dog (at least, most of the time, between dips and, of course, those were the days I photographed and put on my best smile that belied all the many subplots). These days, its a very rare day that I manage to go out for what we call my “walk” which is really the poorest excuse for what I used to do just a year ago; yes, its been a brutal downturn of events these last few months. What was also so evident is how I have ceased taking pictures, at all lately…and how, even before that, they had become scant compared to years where I was so trigger happy I took more than was necessary but which was my way of celebrating a life well lived, in spite of all the hardships.

Watching all these pictures scroll by, it was hard not to feel the profoundest wave of sadness come over me, for all that I’ve lost and may not, and probably won’t, ever gain back again. Even if I bounce back to something like my previous baseline, the inevitable toll of age will mean that its ever-harder to go back to the kind of baseline that someone without almost two decades of chronic health issues can hope to maintain in their mid-fifties. With ever increasing, irreversible, joint issues that seriously affect how much I can walk or use my hands for complex tasks, nerve issues and cardiac symptoms joining the “party”, there’s no point kidding myself about anything except that I’ve now seen my best of years, at least a decade or more before someone with better, less relentlessly assaulted health. Over the last few years, my body has been through the wars and then some, and now it’s really starting to show.

I allowed this wave of profound sadness to come in and briefly take me over yesterday, since it deserves to be heard, but I didn’t invite it to stay. This is because I really don’t do well, at all, when my mental health starts to join the misery parade of chronic illness. As an autistic woman, I’m all too familiar with my propensity to hyperfocus on any particular direction of thought that happens to hold the majority of my attention so, if I was to allow this kind of pathos to fill my soul and overspill the rim of me, I know I would be done for, more thoroughly and rapidly than, perhaps, someone who ruminates and fixates far less. Like a bullseye, I would make grief my target and keep on aiming myself there, so repeatedly I would make a hole in the centre. So, yes, I acknowledged this deep sadness as it came over me, but my no-nonsense need for a plan also stepped up to find a way for me to grab onto some other handrail to get me through the very worst of it.

Making “a project” of self-care and self-comfort has been one of my methods of doing this since we got back from the trip that wiped-the-floor with me up until early last week (this was also the trip where I ended up in hospital with cardiac concerns, more tests still to be run, though a long wait on the NHS). My ME symptoms became so real and undeniable that, at least one upside, my family (who we were visiting) are now fully up-to-speed and cognisant of my health issues, after decades of vagueness and evasiveness, which is a relief as the constant masking and avoiding of the elephant in the room, to avoid making them feel uncomfortable (and me exhausted trying to explain!) about a kind of condition they don’t really seem to grasp, was getting so wearing. It was a two-part trip away from home, the second part of which was added on suddenly and quite unavoidable due to the death in the family that I’ve already alluded to and, in many ways, I don’t know how I got through it but as soon as I got back, I was straight onto the “go softly” approach with myself that I know I so desperately need right now. I had tried to soldier on with some of the worst symptoms I can remember, hardly able to walk (to my husband’s grave concern, my infirm 89 year old in-law did better on small hills that I, literally, couldn’t manage), struggling with an alien bed that was far from comfortable (see my last post), but now I so desperately needed time for me, to be allowed to succumb to the deep fatigue and to process the emotions that inevitably come with a setback in your health that feels more severe than all the ones you’ve ever had before.

There comes a point, with chronic illness, that almost regardless of whatever else is going on around you, or how inconvenient it is to everyone else, you just need to be able to pull away from it all to be with yourself and your own needs, even if they amount to “no more” than the profound need to be left alone, to carve your own space, time to put down all attempts at displaying social skills (such as you have any) to go mute and self-focused, devoid of all expectations from others to do or react or say the right things and just “be” in the dark void with whatever it is that is happening to you. There has to be time and space for you to pull into yourself, to lick your own wounds and to grieve your own losses which, though less overt than an actual “death”, are a kind of bereavement all of their own…a deep sadness for the health you once had, the person you used to be, the hopes you once nurtured. This, like any bereavement, takes time and space and solitude enough to process. My craving for solitude is extremely high right now, perhaps no different to how any wounded or traumatised mammal will withdraw to its den in order to attempt to self-regulate its highly overstimulated nervous system in a way that can only ever be done by curling up, alone. No amount of kind gestures or people wanting to fuss or help out can play substitute for this need to be alone and look our current state in the eyes, to intuit what we most need and to search for the means to initiate the body’s own healing process, which is not something you “do” but, instead, patiently wait for with whatever small iota of faith that you have left.

Those of us with chronic illness really need this; and we also need to advocate for this need, and to make for ourselves “a den” of our own most comforting things. This is what I have endeavoured to do, this last few days since returning home, and I will stay here until I start to feel more resilient in my body. If sadness occurs, I will acknowledge it and allow it to express itself rather than suppressing it, but I can’t wallpaper the walls of my space with it; I know I have to believe there is hope…or things will, very quickly, become hopeless.

One thing that has come out of the allowing of what I most need to just surface in my mind is that I have taken the decision to go back to the Gupta Program, which I blogged about at length when I first enrolled on it more than a couple of years ago. Though the mindset that it instilled has never left me, and it was one of the most helpful tools for coping with chronic conditions that I ever found, I hadn’t been actively following the program for over a year now but, having revived it, starting on the videos from the beginning and using the mediations whenever I feel the need, I already notice how it is helping my nervous system to settle after just a couple of days. One particular strength of the Gupta Program is to help quash the sense of hopelessness that can come with chronic illness and so my instinct to immerse in its videos and audios again was a pure survival impulse that, already, serves me well as I can already tell the difference in my psyche since the end of last week. Perhaps that’s why I finally feel ready to write something about these experiences as, just a few days ago, the very thought felt overwhelming (and as I always say, writing is such a helpful outlet). My sleep has also improved and, though I still wake feeling exhausted and with severe orthostatic intolerance in the morning, I know that (with time) this can start to accumulate positive effects.

Really, the only, true, antidote to sadness due to the overwhelming sense of all that has been lost through chronic illness is to try, really try, to be happy about whatever has been gained along the way and what still “is” in spite of your daily setbacks; as in, the endless continuum of reasons to feel that the universal life force isn’t always being stifled or quashed by meaningless agents of destruction (which is how chronic illness can feel from the inside). That means staying present with every minutest thing that is going right, or which is comforting and familiar, right here and now in this moment, whether it’s simply the fact of the birds going through the usual motions of nesting in the garden and singing their summer songs or the sun breaking through cloud for a blessed moment. Surrounding yourself with home comforts, things and activities that soothe, paying proper attention to the kind gestures of loved ones, to your appreciation for a few well-timed words from a friend, or to moments of tranquility or respite whenever they briefly occur, even offering up gratitude for your ability to feel safe, warm, fed or your ability to just “stop” or delegate when you can’t manage to do something (since not everyone has this choice) can deliver rewards in the form of better, calmer, less grief-stricken feelings.

If all of this sounds horribly trite, believe me I also struggle to rake up joy where there is precious little feeling of it in my body…but I also know its the act of striving towards it that keeps you feeling more fully alive and which opens up opportunities to be pleasantly surprised, because life is always full of surprises and not all of them are bad. After all, improvement itself would be something classed as a surprise and this can only be found where surprises dwell. The positive, grateful, mindset can be like a portal into surprise territory…where better outcomes may, after all, be waiting…whereas an endless cycle of grief will only ever lead to one predictable place, which is towards even more grief.

Somehow, through thick and thin, I’ve always managed to hold onto the hope that this isn’t “it”, that things will get better, that more robust, less painful days will resume. Sure, I’m noticing a trend of never quite getting back to the baseline of where I was before, and even more rapidly so, when having flare-ups in my mid-fifties compared to how I used to bounce back rather better and more often, but then we are all in that same boat when it comes to the affects of age, chronic illness or not. Perhaps for us it feels more overt, this downward slide, but then other people have sudden, acute, illnesses that sweep them abruptly off their feet…whereas we are veterans of the long, hard slog, which has (in many ways) built up our resilience and inner strength, and like a muscle we didn’t even notice we had bulked-up by chopping wood day after day, serves us well through times that might throw other people into total disarray. My husband often comments that if he had to deal with what I deal with on the average day, and week after week too, he would be a total, blithering mess of anxiety and hopelessness whereas, at least at the surface, I am not, which takes years of practice.

Yet it’s not always a case of being well-versed at masking or deluding yourself…sometimes it comes out of a genuine knowledge, from experience, that this illness isn’t the only thing that matters, in fact it’s still, somehow, the least of things because your soul still rallies and grows for as long as you reach for the upside and relish the little joys, the moments of light, the chances to be of use or support to others, to feel connected if only through hardships shared, the feeling of contributing something to this life, however small-scale or niche that may be, and still wanting to be here. Sharing these words of so-called insight, on the first day I’ve had stamina enough to lie here writing for a while, are my small way of feeling like its not all in vain, even if it helps just one person to feel less hopeless or alone when their health drags them down again.