I recently promised this post would be coming so here it is; an exploration of what “rolling PEM” (Post Extertional Malaise) is within the context of ME/CFS…what does it look like, how does it happen. So with apologies to those who have heard the saga of my recent health crash before, I need to run through some examples from my own experiences, both now and in the past, in order to get more granula (as in, breaking down into chunks…) these things as they have tended to come about for me, using them to contemplate why we don’t always notice rolling PEM when it is starting to brew, typically leading to some sudden exaggerated health relapse that seems to “come out of nowhere”, as is very common with ME/CFS. Those smaller bouts of PEM after overexertion are somewhat understandable when your body struggles to manufacture energy in the appropriate way but what is this whole other matter of rolling PEM and why does it tend to creep up on a person?

It’s a recognised characteristic of PEM associated with ME/CFS that it generally happens in a delayed way after a couple of days or so, not immediately after the exertion. So, for me, it usually takes 48 to 72 hours to experience PEM after some form of over-exertion. However, I am currently in my biggest crash for over a decade (having lived with ME/CFS for almost 20 years), happening long after the biggest exertions of recent times, which were the stresses of last year; a very physically and emotionally demanding time for me whilst, ironically, this year has been much better overall. So why such a big crash now, not last year? It might seem to make no sense.

I still believe it is because of our house move and relocation, culminating last February, that I am experiencing this crash, even though the PEM didn’t happen until July. This loooong delayed factor is often a classic sign that rolling PEM is occurring or has been happening for a while, the crash itself being like the exclamation point at the end of a long series of overdoing it so much that periods of exertion have been overlapping each other and accumulating. Here’s another classic sign….the exertion process may not have even seemed all that bad at the time, or at least you coped pretty well and thought you had got away with it. There’s a reason for this, I believe, and its as follows.

In the example given, this relocation process (for quick recap) took many months to achieve because we had to rent temporary accommodation for 6 months plus all those previous months of preparing. I was living in a state of prolonged adrenaline surge at the time, existing from moment to nail-biting moment for all those many months as the saga of selling and buying a house unfolded, plus I got covid at Christmas but hardly had time to stop as we were about to move into our new house, which was far more exciting to me than covid was able to detract from. I thought I had got away with it all…but started feeling unwell with dysautonomic symptoms a couple of months after we moved in and then, wham-bam, experienced such massive PEM in July that it has had me back on predominantly sofa rest (I go nuts with bed rest otherwise I would be there…) and virtually stuck in the house for 6 weeks now, hardly able to walk further than what it takes to get around the house for much of that time and very limited in the physical activities that I can manage. I haven’t been this severe for so long since 2011 so it’s a real shock to be back here and such miserable timing with the new location to enjoy and summer weather so there is no part of me relishing this backward step.

This time last year I was upright and busy and seemed to be pretty “normal” (in fact we were about to move out of our house exactly a year ago and full of nerves and excitement but every day was a physical feat), which is to say, sort-of stabilised in ME/CFS terms, which is always a case of having to err on the side of caution overdoing it wise and having rough patches every few weeks or so as the price to pay. In fact it amazed me how well I coped at the time!

So what I am saying here is that, yes, adrenaline seems to be the main thing that somehow cloaks the symptoms of overexertion when they are happening; adrenaline can certainly mask PEM coming on, as is well talked about across many information sources when it comes to ME/CFS and PEM. Endorphins also serve as a symptom mask according to something I read recently…in other words, if you are flooded with even the good feelings from whatever you are doing (for instance, I was so thrilled to be finally leaving my old house and it was quite an adventure, quite exciting etc.) that can also symptom-mask, allowing you to push through unusual tiredness and extra pain because you simply don’t register them at they time they are happening…not until after the chemical rush dissipates (I first read this theory in the book Classic Pacing for a Better Life With ME by Ingebjorg Dahl).

In fact, let me just say, it seems to me to be one of the most brutal and downright nasty aspects of living with ME/CFS that the very activities that bring you most joy, most relaxation, respite and even a few moments of euphoria to balance out all the exhaustion, limitation and pain (for instance, in my case, it might be going out to see life music performances or laughing and being myself for a while with people I feel comfortable with), and which are mostly so hard to come by when you have such limited energy or mobility, that then have such a sting in their tail…because that very euphoria, the “high” feeling, tricks you into thinking you are coping when you are not, leading into so much worsened fatigue and possibly being bed-ridden, house bound or in even more pain and disability after the event because of having unwittingly overdone it in the moment!

Such an extortionate price to pay for a short period of enjoyment and forgetting about your limitations for a while!

Related to all this is the matter of overstimulation. It’s important to note that it’s quite possible to experience being overstimulated without all the more obvious physical symptoms you tend to associate with a massive adrenaline surge. Especially if you are highly sensitive, perhaps on the autism spectrum or otherwise neurodivergent, its possible to feel somewhat overstimulated most of the time, thus making it especially hard to notice when more stimulation comes along (or perhaps you even somewhat welcome this upsurge if you are ADHD). The interoception skills required to notice this subtle change might be an active weak spot, as they are for many neurodivergent individuals though I often wonder if this is more to do with just how much “data” our overstimulated systems are party to all the time, since we tend to pick up on so much more detail than other people that its hard to sort out and make sense of everything all the time (plus we learn how to filter some of it out of our attention and ignore it as a way of coping).

In other words, it could be that your nerves are far more attuned to picking up a lot of stimulatory “data” than the average person and then you get accustomed to feeling burdened by it all. For instance all it takes for me to feel suddenly overwhelmed, sometimes, is a change in the weather (particularly windy, unsettled, conditions) and then my whole nervous system takes a hit, with related physical symptoms materialising fast and hard. So imagine what a long sustained period of increased exposure to adrenaline or overstimulation could do, in the long run, on top of all the usual stressors, and how that could then become the new “normal” for a while…bizarrely unnoticed because its just more of the same…yet start to have a cumulative effect as far as building up a tiredness stockpile that will require paying back at some later date!

One other area not to be overlooked is emotional overstimulation. I know for a fact, and I hear this a lot in ME/CFS forums, that it’s more than possible to experience PEM after some emotional stress or other or to “crash” into exaggerated weakness and prolongued fatigue from, say, a relationship upset or misunderstanding, for instance. I can certainly attest to periods of having family worries or some of the situations you routinely have to handle as a parent throwing me off into severe PEM in the past. Thinking that this part of the human nervous system is somehow separate or without sway when it comes to general health outcomes is a mistake often made in conventional medical contexts but those of us with long-term chronic illness know different. Its fair to say, last year was a hot-spot of emotional strain from beginning to end, meaning my system was under severe emotional duress, even during those long pauses when (frustratingly) nothing seemed to be happening with our house move because matters had got stuck (like when our sellers were waiting, for months on end, for probate to be granted on the house they were buying so we could all complete, forcing us to keep on renting). So, times that seem energy neutral yet which hold us hostage beneath the tangled ropes of frustration and enforced inertia etc can sometimes be the biggest triggers for the kind of sustained PEM that goes undetected because we “think” we are not actually doing anything particularly tiring at the time!

The thing is, the body learns to expect these overstimulatory bad habits so early on in life (especially when neurodivergent because of our additional propensity to become overwhelmed?) because the habit of coping with many stressors at once, without respite, is forced upon us as soon as we reach semi-maturity. My daughter just described being stuck in the same habit that used to trip-wire me into rolling PEM whereby she feels so crashed the day after she finishes work (it’s part-time but brain intense) that she feels like she needs a complete day of bed rest but, because she is trying to keep on top of other things in her life, including her academic work, she pushes through that fatigue and then feels utterly crashed by the weekend (when she feels committed to do things with her partner or friends and wants to “have a life” that is not always dedicated to work). Doing life-admin “executive function” tasks to do with finances or health takes up too much time amidst all this and, besides, there is no energy left to do them, leading to more problems and mounting anxiety; it’s a cycle of doom and one that I know I got stuck into very early in adult life, long before ME/CFS came into the picture.

What I have learned, the hard way through ME/CFS, is that the body can hold all sorts of things at bay until “a more convenient time” and I see how this has happened more times than I can count in my life; its near-enough happened every time I have “had” to be ready and able to get through a busy airport and onto a plane to go on holiday, for instance (frequently resulting in a delayed crash on the other side of the exertion) because you simply can’t afford to miss that plane, so you push on through on adrenaline. If I had crashed during our house move, I don’t know what we would have done as we were having to constantly navigate urgent situations like moving around between accommodations or meeting deadlines, plus I was in charge of all the logistics of the sale and purchase. In fact, I got the first warning shots last Easter, when I had some severe dysautonomic symptoms (heart and circulatory symptoms are often one of the very first signs of overstimulation to look out for on the way to an ME/CFS crash, along with sleeping issues, feeling constantly wired but tired, experiencing short periods of symptoms flaring and/or infections, or flushing, IBS and mast cell issues etc.) however I felt forced to push on through. The whole process of moving then took far more energy than anything I’ve done for years, far more than I’d anticipated in advance. We knew it was a risk to my health before we did it but I had no idea it would affect me like this, which has been like being hit by a truck months after the event!

In short, as per normal with rolling PEM, the crash that has resulted from all this was delayed by several months but then, when it arrived, was even bigger and more devastating and impossible to ignore than any of the smaller crashes along the way. This is extremely typical of rolling PEM from everything I am reading…it comes late, it creeps up on you and it comes BIG. Likewise, the very first time I got ill with ME/CFS, I managed to hold all the very worst health effects that had been going on for over a year at bay until I’d finished my 3-month notice period at work (I was leaving because of these repeated smaller health crashes) and then, about 6 to 8 weeks after completely stopping, my ME/CFS became so suddenly severe, just as I expected to see improvements, that I was utterly flattened. That time, it lasted more-or-less 5 years at that level, during which my better phases were the rarity instead of the other way around; a very difficult and different life to what I was used to and what I look back on as “the dark years” before I got much better at stabilising my energy again. I really don’t want to go back there and that’s why I am giving this so much thought and doing all the ART (Aggressive Rest Therapy) that I can muster!

So, in essence, rolling PEM is when your body keeps releasing adrenaline to allow you to cope with what you don’t have enough energy to do. Its also a trickster because it can even feel good at the time it starts accruing…I hear just so many people attempting to describe it saying that they felt so good while they were in the thick of pushing through the big project or doing more exercise than normal or handling the new responsibility at work (I wonder if this is all more so if they are ADHD as I am), that they felt like they were over ME/CFS; that they even thought that maybe they were getting permanently better at last, that it was a sign that they were ready to take on more…and that’s just how I felt last year, most of the time. It can be so confusing because, at the height of the adrenaline surge, you can feel as though you are more than coping, that things really are improving, that you are putting chronic illness behind you at last, so you then feel more confident to take on more of the “normal” things than you would otherwise dare…and then, some time after the excitement and adrenaline has worn off, rolling PEM has the last laugh!

The signs of me coping were so positive, I honestly thought I had put the worst of ME/CFS behind me now and was poised to take up my new life in which, of course, I imagined I would be symptom-free because there was no way I wanted to carry chronic illness into this new paradigm I had so lovingly created for myself. I “just” had to see someone to help me iron out any ongoing issues with my worsened hypermobility issues, attributed to age, which were the reason (I told myself) I was sometimes still experiencing dysautonomic symptoms…so I just needed to strength my weak spots and things would get better again. What I chose to ignore was that dysautonomia can also, more often than not, be a clear sign that someone is systemically exhausted, their autonomic nervous system misfiring because it is in a state of perpetual energy depletion leading to all the confused nerve signals and frequent misfirings that results from utter fatigue!

If what I hoped for and envisioned for my new improved life, above, was at one extreme end of my optimism scale, what actually happened to me lurked at the other quite unthinkable end but here it is; though I never imagined I would be set right back in time like this until it happened. Many weeks into it, I feel frustrated and not a little unnerved by it because the fatigue is so relentless; I make small inroads towards improvement only to get smacked back again by the smallest new effort.

Another reason I can see that I became vulnerable to this outcome is that I had also fallen into the bad habit of choosing not to even use the term “ME/CFS” if I could help it as I was trying to dissociate from it, to put all that behind me…but that only threw me into even more danger because it meant I was in denial of the very need to pace, which is something utterly fundamental to anyone with ME/CFS and which they must learn to do diligently for the rest of their life, because when we don’t do it we relapse…sooner or later. I had allowed myself to forget all of that; and now, as a result of these events, have had to learn it all the more diligently than ever before, hence all my recent posts on the topic because I feel its so important to share it. This is the ONLY way out of an ME/CFS crash as far as I can see; not to mention the only way to prevent one happening again!

Another example of rolling PEM that crept up on me and then smacked me between the eyes and completely “out of the blue” occurred the year before the pandemic. At the time, I thought I was feeling better enough to take up cycling again (something I hadn’t managed to do since before I originally got ill, well over a decade before, when I used to cycle a great deal). Of course, I got back to this with all the evangelical zeal that is characteristic of my ADHD brain, doing it not once to test the waters but every day for half a week. Did I mention, we had only recently got back from a trip abroad that had involved walking and swimming (which had taken me about 3 weeks to recover from as it utterly floored me) and, just 6 months prior to that, another trip abroad that was also fairly demanding (we were making the most of our new freedoms as recent empty nesters, having never been left alone without kids before as we both brought a child from our former marriages with us when we met).

The day after the cycling, and getting caught in rain, I pushed through to go on a UK holiday involving a very long car journey and then pushed through some more when we got there worn out because we had to deal with a stressful situation that arose. Then I had to hold it together for yet another day as some of my family were stopping off to visit us at our holiday rental. After that, we climbed the steep hill and then I tried to go on a walk that involved clambering over rocks. The next day, I literally couldn’t get out of bed without assistance, could barely dress myself, had to sit on the cold tiled floor of the wet-room to get a shower and then be lifted up from there to the toilet seat and helped to dress…we literally didn’t know what had happened. Yes, muscle overexertion was involved, I’d physically overdone it but there was a tsunami-like fatigue wave involved in it too; it was like I could hardly gather enough energy to do much more than breathe. This phase lasted for three long months of mostly lying down and hardly able to leave the house. I didn’t call it rolling PEM at the time, attributing it to hypermobility aggravated by the cycling, but it really was. Months and months of overexertion had built up in me because I’d wanted so badly to claim this carefree and active new life as a couple, the fresh new start we deserved as two adults who had never been left alone for so much as a weekend to enjoy doing things without family responsibilities. So fuelled with endorphins and adrenaline was I, at the start, that I did way too much, not noticing half of the clues that I was in pain or fatigue from over doing it (conveniently forgetting all about my track record of ME/CFS, fibromyalgia and PEM) and then it all caught up with me at once!

The lesson in it all is that rolling PEM can be vicious and it can stealthy. You might think it isn’t happening at all because you manage to get away with it, not once but multiple times over, because adrenaline and excitement get you through doing more than you should without apparently needing the appropriate recovery times (which, for you as someone with ME/CFS, are always going to need to be much longer and more regularly spaced than for the average person) but don’t think for a moment that the need for payback has gone away because you felt fine at the time; it’s simply accruing interest!

I recently heard a description of this that went along the lines of if normal PEM is a debt you always have to pay back, like repaying a bank loan, then rolling PEM is like having to pay back a loan shark with unimaginable amounts of interest added on top. You really don’t want to be indebted to that kind of debt collector because it can be utterly ruthless to deal with; there will be no more negotiating or delaying to be had, absolutely no leeway for extenuating circumstances given!

In other words, you don’t want to go there…at all…so the key is to do everything you can to learn what triggers it and then learn how to avoid it.

The key to which is remembering that ME/CFS doesn’t simply go away as we like to sometimes imagine…but it can be befriended which is to say you formulate a working relationship with it. This involves always listening out for signs and clues that you’ve done too much and always factoring in rest times well in advance of when you think you need them…preemptively pausing and also factoring in spaces for recovery whenever you set your timetable, rather than waiting to be told by your symptoms that aggressive rest to repair your fatigue is now urgently necessary.

Live like this and you can stay pretty much on the level, I suspect, assuming you’ve not become so severe that you are are in energy deficit from doing the most ordinary of life tasks such as being alive, as sometimes happens with ME/CFS. Ignore this advice at your peril because, with ME/CFS, there is alway a consequence for using up more energy than you have or not promptly paying back what you’ve spent the moment you get the chance. Pay back what you’ve used as it happens and the debt won’t build up…so diligently do this, even if you think you just got away with it and feel “fine” (allowing for the masking effects of adrenaline and endorphins which may be allowing you to feel better, right now, than you really are). In other words, avoid rolling PEM at all costs because it’s brutal and it’s so much harder to get out of than the usual version of PEM, demanding ART in spadeloads plus the patience of a saint (as I can currently testify to).

And as I am finding right now, having experiencing a mild “high” this week from the fact I got to go on my very first walk outside the house alone on Tuesday, although I had to pause on 5 benches and it required an afternoon of diligent legs-up rest and recuperation; but, still, an achievement, so absolutely lovely to get out and see something different and, yes, I thought I had got away with it. The day after, I felt like a caged lion because I knew it was too soon to repeat (I was definitely feeling extra tired from it) and being stuck inside felt more abhorrent than usual because I was now eager to have more of that euphoric feeling from being outside the house. However, the day after, and continuing, I’ve been slammed with so much extremely intense PEM and pain that I am back to having to curtail my exertions completely until this starts to feel better again, in fact I am able to do even less than usual around the house. I know that if I go back for more exertion too soon I will inevitably find myself back where I was right before this crash happened, with periods of PEM overlapping with times of over-exertion and no recovery opportunity between them, until I end up right back at the start of my 6 weeks (to date) recovery process again…simply not worth it. As I said, the patience of a saint required.

On the other hand, earn my body’s trust and it should start to improve in, not quite leaps and bounds but, steady forward movements, like seeing pinpricks of light shining through dense cloud but that takes time, it takes sticking power and it takes the resolve that comes from understanding why I have to do this, trusting in the process. It takes developing a whole other mindset around what being purposeful is (not always “doing” something but actually, sometimes, choosing not to do it!), about what’s important and about what constitutes contentment or even enjoyment.

We tend to contort our whole lives around our preferences but recovery from rolling PEM takes a process of unwinding the sheer compulsion of some of our strongest desires, letting go of some of the wishes and imperatives, unravelling the urges that make us rush to the get through to the next thing until we can stay present with the moment we are in…exactly as it is…and feel OK with that. It involves slowing right down and being much more attentive to what we really need right now; not what we think we need or ought to be after.

Because it also involves slowing and quieting enough to listen to the subtle clues and messages sent out by our bodies that tell us when we’ve done too much or had enough for now. It involves learning how to diligently track and record symptoms, using methods such as a diary, heart rate trackers or the Visible app, to learn patterns of what overexerts and triggers our fatigue. It involves having the patience to experiment and, if necessary, pull right back again without feeling like a constant failure (rewriting that kind of self-talk to eliminate old ways of determining success that now do you no favours at all).

The whole process of recovery from rolling PEM teaches you just so many things about yourself, including what you can genuinely handle at one dose…now there’s a huge benefit that will help get you through the rest of your life…so that, hopefully, you won’t ever have to learn the harsh lesson all over again at some point in the future.

Disclaimer: This blog, it’s content and any material linked to it are presented for autobiographical, general interest and anecdotal purposes only. They are not a substitute for medical advice, diagnosis, treatment or prescribing. Opinions are my own based on personal experience. Please seek medical advice from a professional if you are experiencing any mental or physical symptoms that concern you.