We all have our particular weaknesses. For instance, deepest fatigue is not my friend!
This is something I have to remember, and keep on reminding myself, even as I have an up-tick in my energy and recovery process.
Perhaps especially so then!
Because when I get fatigued, its as though I drop all my plates; many more plates for the fact I try to spin just so many of them, all of the time, which is a product of my over-active mind and imagination. Its not so much that I multi-task any more, which I long-ago realised I am poor at, but that I am spread thinly on the inside, where all my ideas are cooked (and, incidentally, where my body is managed from…and there is always so much going on in there).
So, chances are that deep fatigue comes in the wake of a more energised phase, one where I have likely added on a bit more here, a little bit more there and suddenly I am happily creative in multiple directions, perhaps even stretching myself to engage more with other people (if on my own terms, as always….but chatting online counts for that and can be equally draining in its way), to tackle more “jobs” around the home, and so on.
But there’s a few things I have to remember here, and it comes right back to my last post.
- My executive function is weak, including that I don’t know when to say “no”, “enough now” or “stop”, even to myself.
- My sensory processing, which is already a handicap to me in that I sense much more than I can handle and struggle to process what I sense (especially in situations where a lot is going on) gets completely hammered when I am overtired. This leads to a cascade of reacting even more strongly to things that I already react strongly to, even on a good day, leading to more fatigue and pain, which then leads to more over-reaction…you get the idea.
- My ability to recognise when I am overtired is abysmal, so I can be extremely slow to step in and parent myself into a quieter day, week or even month…instead, I just keep on pushing, trying to stick to whatever routine I’ve fixed upon, until I literally burn out.
Finally getting all this, which was as clear as mud for most of my life but a lot of things have become more clear lately on the back of realising I am autistic, is like finding another superpower. Because if I can “get” all this about myself, I am one up on the vast majority of people because these foibles are endemic in the population…they really are, and never more so than in modern corporate life…its just that, in me, they lead to a really dramatic kind of burnout whereas other people might take a tumble in a slightly less “throw in the final towel” kind of way. Of course, you don’t have to be autistic for that to happen, but it certainly doesn’t help because you are already dealing with more than you can handle most of the time.
Mine has, historically, led to chronic fatigue syndrome, fibromyalgia and a whole range of down-stream conditions and pain syndromes.
Another thing I’ve noticed; when I am deeply fatigued its as though my parasympathetic functions go completely array, as though my body lacks the necessary resources to remember how to breathe, swallow and operate the endocrine or nervous systems. Most of the outcomes are subtle, as in, my entire system tends to collapse when I am fatigued but its harder to pinpoint “this is because some peptide forgot to do what its supposed to do this morning” (though I kind-of sense there is a truth to it). Sometimes, like when my heart pressure does something completely inappropriate all on its own or it’s almost as though I forget to breath properly for an entire day and so I’m suddenly oxygen starved, its more obvious. Another trait is that I am terrible at noticing when I am chronically dehydrated or misintrepret this for other things, including hunger and other causes of brain fog, headache or itchiness when really I need more hydration, urgently. Its as though those types of signals get pegged at a lower priority than they ought, only to fall off the scale entirely when exhaustion kicks in.
Take last night, when I was more than aware as I crawled to bed that I had got myself very deeply overtired. At about 5am, I surfaced from a deep sleep to realise I was about to choke and then promptly did choke…spectacularly…on my own saliva. It was as though I felt the mistimed step between breath and swallow coming my way but was too slow to stop it from happening. Meanwhile, my life flashed before my eyes and I literally thought “this is it Helen” before spending the next 40 mins coughing my lungs up, even hanging upside down off the bed to try and get over it.
This may sound like a chance one-off but its not for me, in fact its happened such a lot lately and gets much more likely when I am really, really fatigued, yesterday being a point in case. I suspect its also linked to Ehlers Danlos syndrome and I can recall my mother doing this a lot, especially as she got older. Whenever it happens, I can end up with sore lungs for days!
I wrote last week about the fact I’ve been getting up at 6am to do my Power Hour routine and I love it but when I started that I was aiming to get to bed earlier to compensate. Over the last 4 days, that earlier bedtime has really slipped and last night it was almost midnight, for a variety of ill-timed reasons, by the time I put my head down.
I may have got away with this if only I wasn’t so extra tired but it had been a big day for extra energy expenditure. After a crash day on Saturday, when I was having wave after wave of dysautonomic lightheadedness and low blood pressure, even from a reclined position on the sofa, so I was pretty-much forced to take it more easy (PoTs like symptoms are a well known cause of extreme tiredness and mine have been increasing steadily this week) I suddenly bobbed back with more energy on Sunday. Its like part of me is quite determined to spring out of its box right now, refusing to be laid low for too long, on that back of the ever more evident “spring-vibe” in the air and so I did TOO MUCH. I had pretty much decided I wanted to be better today and there was no stopping me.
So, in the morning, after my usual routine, I took a shower (which, in itself, can tire me more than you would think possible) then, because I wanted to be outside in the sunshine, I got it into my head to prune the overzealous buddleia and wisteria that I spend my days staring at from the window. So I spent over an hour up a step ladder (impressive, bearing in mind my extreme dizziness of the day before..) stretching and tugging and clearing huge amounts of tangled woody branches. After that, I declared myself too “done” to come for a dog walk but, after a quick tea break, tugged on my boots and went along after all, persuading my husband to do the longer walk, up the hill!
After lunch, I was longing for 40 winks but was scheduled to talk to my daughter so I waited around for that and then spent 2 hours on the phone, which was lovely but exhausting. By now, it was time for dinner so I dived into the new self-created recipe I had planned for the evening and all that plus eating and clearing away took me to about 8 o clock, which was when my sister popped up for a chat. I managed to watch a film but there were numerous interruptions from various sources and, as I said, I got to bed late.
It was as though the choking episode at 5am was a wake-up call, quite literally. Something about how much I choked came at me as a kind of ready reckoner or life-review. One aspect of that was how ridiculous if I should die this way, and how annoyed would I have been if that had been it and I had wasted so much of my life up to that point consumed with some of the ridiculous worries that have taken me over these last years….yes, it made me even more determined to dive into the program I’m on and recover my health!
But it also brought to light what I’ve shared above, about how deep fatigue can really get to me. It might have been something I could shrug off in my younger days but the way I responded to it in my mid 30s when my health spectacularly crashed, at a time when I was very VERY deeply fatigued, was a clear warning that such a lifestyle was not for me any more; something had to give and if I haven’t got that yet, then I need to start getting it before I can recover!
And recovery, I believe, is now a very real possibility but I know I have to take stock of my own limitations and include them if I am to get there as not everyone on the Gupta Program is also dealing with autism. Over the weekend, I watched a new video testimonial from a woman on that program, who had pretty much the same mixture of health conditions as me at the start but who, after 3 years of ups and downs yet committing to the daily practices without questioning them, as I am doing, has now fully recovered her health. It was a deeply affecting account and I have bookmarked it to give me some continued encouragement.
One of the things she said more than once was that recovery did not look how she used to expect it to look. In the early days, she imagined it would mean gong back to how she was before but now she realised she didn’t want that any more, plus it wasn’t sustainable. Her old life had involved rushing around, constantly busy, always motivated by wanting more and fitting a lot of things in, comparing her life to other people, dashing in and out of her pristine house and hardly having any time left over to spend with her loved ones or to smell the roses. Now, she realised she wanted a slow and steady life, full of real experiences, deep appreciation and taking her time, stopping to pause to do things that give her comfort such as taking the day off, being in nature, relaxing with a movie, soaking in a bathtub and remaining present.
These are things I’ve learned to value along the way too and I must never, ever forget that again.
One of my pitfalls is that as soon as I start to feel a bit of an up draught, and that can either come from me because I am feeling more optimistic of less symptomatic, or it can even come from an external source such as someone else’s enthusiasm, a sunny day or a change in the seasons, I am like a rocket launcher and fire myself straight up to the stars of what I imagine I would like to do if there were no consequences.
Its a child-like quality that is almost absent of the ability to store that consequential information, as in, I tend to forget or shove to the back of my mind when things don’t go so well (thus I don’t quickly learn from them…) and hold onto the childlike optimism that I can try them again next time the opportunity arises so I do, on endless repeat. I notice this especially at certain times of the year, like in early spring when that first hint of lighter days and better weather has me wanting to run before I can walk…and so, then, I typically fall over and set myself right back when I least want to be having to convalesce. Its been the frustration of my ever repeating, goldfish-bowl-like life to date and I need to get over this pitfall!
I have to keep in mind that I can’t run at things the way other people do; I cant cope with 0 to 75 mph in one go as some people can and that’s just a fact of my life. Transitions are one of my weak spots!
When I act like the child that has never been in this situation before, and look as though I am about to make the same mistakes, its as though my body is then left with the serious business of holding me to account…because I don’t pay attention unless my body screams symptoms at me, and even then only when it screams very loudly!!
So it’s time for me to pay attention at the stages when the earlier symptoms happen, not to worry about those symptoms (that’s a whole other pitfall I fall into and the Gupta Program is taking care of that) but to take the simple clue that I need to reevaluate what I am doing and when to pause, and then to be the nurturing parent to myself that realises, sooner rather than later, that I can’t get away with burning the candle at both ends. Yes, its great that I’m loving these early morning starts in sync with the spring weather, but something will have to give and that’s going to have to start with my tendency to still be up watching a film at 11pm and not getting more organised for bed well in advance. On days when I take on one bigger task, I can’t then expect to tag on another (like some gardening plus a longer walk plus a phone conversation) and that’s just that. There are some rules that can’t be bent without consequences.
On this same theme, and as I replied to a friend who commented on my last post, I have had such a breakthrough writing down for myself a sort of memo listing my shortcomings, stating them as follows:
- executive functioning challenges
- social communication processing challenges
- sensory processing challenges
so, in these areas, I need some accommodation.”
As I said to her, this is both a memo of what I should now feel able to say to others in situations where this needs explaining to them (keeping it beautifully simple), but also to myself when I, so frequently, forget my own shortcomings. I honestly think that the bulk of my “problems” have been that I have been drowning in over-complications to do with these 3 things…all my life…partly because I didn’t even realise I was autistic for all those years. In fact, I could almost boil everything back down to these 3 things! Perhaps keeping this short list in sight will help me navigate the world easier and also keep things in proportion since, it turns out, there isn’t very much wrong with me apart from these few challenges, and we all have our weak areas.
What I describe in this post to do with overdoing things is, kind of, an executive function shortfall, but it’s also more than that. I suspect it almost has more to do with poor interoception (which I plan to write more about at some point soon), which is a known autistic trait, as in, I struggle to evaluate information from my own body. Research has shown decreased interoceptive awareness in autism but that adults often have idiopathic (person-specific) increased interoceptive awareness as in each person might notice a different array of physical sensations more than is typical. Whether it is decreased or increased, the shortfall can come from the inability to process it, which can equaly result from having too many signals going off at once or so much overwhelm and fatigue that you prioritise wrongly…or not at all.
In fact, because of my heightened senses, I have tended to assume I have too much “skill” in this department but the issue isn’t the amount of data being received so much as my compromised ability to interpret or respond appropriately to it, especially due to the sheer quantity of data that comes my way all the time, which can feel so overwhelming I don’t know where to start with that processing task. The best I can do is try to join dots together and then I end up locked into all these theories as to why I react strongly to this or that trigger, but it doesn’t help me get out of the situation; I’m still left feeling unable to prioritise the, often conflicting, sensory cues that bombard me day and night, which leave my brain and nervous system in a state of constant fatigue as I try to “solve” my way out of it all. This interoceptive sensory area, known as the eighth sense, by which I am meant to know what’s going on in my inner biology, therefore becomes a very starkly weak area because it’s overloaded, inside and out, and there is limited precedent offered by other people as to how to cope better since my senses feel like the oddity in a world of, mostly, far less sensorarily aware people.
Oh, and one thing I just realised…whilst I might not be able to go from 0 to 75mph in my activities, I can certainly go from one to the other in my pain levels, and this is presumably because I am too slow at noticing the subtle clues that a physical meltdown is about to occur. I just read an article on this very trait and someone had commented about their autistic mother who was always oblivious to pain or tell-tale signs until there was a serious health crisis knocking on the door and, immediately, I thought about my mother who would always declare in the most cut and dried way “nope, nothing ever wrong with me, I never get ill”. It was like an extreme kind of stoicism (although she sometimes looked like she needed to stop or get some attention…) until, all of a sudden, she had health crisis after health crisis like they had all been storing up for decades, some of which (her liver cancer) she was told had presumably been showing signs for quite some time but, even then, she struggled to describe the symptoms until they became very obvious to us all. Yes, this can be a perilous trait to live with, especially as we get older!
Another version of this trait, in my case, is that emotional symptoms can often present to me as extreme heat/cold or random stabs and prickles, etc rather than a clear awareness of the emotion I need to process or deal with. So, for instance, I have unprocessed anger or emotional overwhelm and I’m suddenly red hot, or I’m in fear, worry or alarm and I’m as cold as a brick; I can’t deal with certain people or a situation and I’m alive with electical currents and nerve pains to the point of almost blacking out. I can see how I did years of this in my former marriage, which enabled me to put up with years of bottled-up emotions and unprocessed anger as though I was an absolute saint but, meanwhile, my body was alive with bizzare physical symptoms. My intense dislike of causing a scene or getting into conflict has, if anything, pushed me towards prefering to think I have something physical going on rather than facing-up to any bottled-up anger that is in desperately need of seeing daylight. In fact, nothing is ever straightforward for me but it would be easier if I learned how to interpret these things better, earlier, and did the processing then, before it escalates or I go down some completely wrong set of assumptions as to why I am symptomatic.
So, to that list above, I feel I need to add points no. 4 and 5:
- emotion processing challenges
- interoception challenges, meaning I struggle to assess my own physical state
So, in these areas, I also need some accommodation.”
In other words, when I consider taking on a task (for anyone else or myself) I need there to be plenty of room for me to change my mind or alter the pace because I find it hard to accurately predict in advance how well I will cope and this is only made worse by rushing or pressure. There is a good chance I am telling myself I feel ready for anything, just at the point when my system is trying to say its time to stop, which can lead to sudden changes of plan, overwhelm and burnout, and can make me seem extremely unpredictable, even fickle, and as though I pull suddenly acute symptoms out of thin air, which can seem dramatic, made-up or attention seeking, and all because I have a less effective warning system than most people.
I’m sure there is a much more elegant, abbreviated, way that could be worded but its a start and is there as a prompt to myself, mostly, that my enthusiasm often outweighs my ability…so, to check in with that, and be forgiving at times when I have to modify my own undertakings, even after an enthusiastic start. Its never done from a malicious motivation or a desire to disappoint anyone, including myself, but I am very weak in the area of matching ability to undertaking. Whatever I am doing, I always need to build in the flexibility to change my mind or to modify the pace of something, until I start to get it more consistently right and can make something into more of a routine…but I can no longer “perform” to the extremely fixed and demanding expectations of the world that I used to try to take part in and that’s that. You could call that a limitation, or you could see it as a powerful epiphany with the potential to make life a whole lot more organic and enjoyable!
So, perhaps its time I stuck this memo to the fridge or somewhere else that I get to revise it daily because, rather than limiting me further, acquainting myself with these handicaps is the way I get to enjoy far better, less compromised, use of my autistic superpowers (of which there are many) going forwards. I need to allow that knowing how to slow down and deeply relax is one of those superpowers; one that the last few years of enforced rest has polished up like a sparkling diamond from the very rough beginnings I started with…and so I have no plans whatsoever to leave that skillset behind.
And now, having processed these thoughts through writing them down, which is another method that I used to calm down my nervous system, I am going to get on with my far-more relaxing day of rest and recuperation.