Let’s make no bones about it, I’m having a significant ME flare-up right now, on a scale and persistence only experienced a small handful of times across all the years I’ve lived with ME, having gone on for over a couple of weeks and being particularly life-affecting. Normally, the most severe of flares still only last a few days and then I am through them again, these days, and sometimes I can manage to continue on with a modified version of everyday life, to about half the level of normal, but this is something deeper and less to be adapted around. I’m managing probably less than 5% of so-called normal existence right now. When ME is moderate to severe, it cannot be argued with!
How do I know this? Well, whereas I could normally expect to stabilise for a few days at a time between “dip” episodes, I currently only seem to manage one day of bounce-back (the kind of day when I feel somewhat better enough to actually get washed and dressed, sit up, maybe even do some exercise like a short walk) followed swiftly by another, sometimes even deeper, crash the day afterwards. Post-exertional malaise (PEM) is a core feature of ME but I haven’t had it this severely for some time, to the point that there is a price to be paid for every small attempt at activity. I’ve never been bed bound, thankfully, but I’ve certainly been sofa bound lately and I don’t know how I would cope without my husband at close hand. It all seemed to begin, now I remember it, with a brief sore throat and a swollen gland feeling under the arms, as is often typical of ME.
This reminds me, so horribly, of how I was in the very early days when ME was especially bad, and this fills me with awful dread as I really don’t want to go back there again. Dare I say it, symptoms feel even worse than I remember, possibly because of my age and the toll taken on my body since those early days. I really don’t want to risk this taking a hold of me for many months, as it did before.
I’m just so fatigued right now that I can hardly function, or even sit up much, during the day (having to pace even my sitting postures!) and yet I can’t sleep well at night either, nor can I get comfortable as all my limbs and especially my joints, even my sit-bones, hurt. My arms feel so heavy I can hardly lift them above shoulder height for more than a few seconds and taking a shower is so exhausting I’ve only had one in a week (even sitting in the bath is exhausting). Can’t read, can’t concentrate, even spoken narratives and plots tire me…yes, this is much more than my usual flare.
Normally when I “flare” I tend to be able to hyperfocus on something cerebral, or on doing some art, to take my mind off it but this time I can’t seem to do anything creative at all (if I try, which exhausts me before I’ve even set myself up with materials I need, it only goes badly and frustrates me to tears) nor can I do very much with my intellect due to severe brain fog meaning I can’t concentrate, can’t hold more than one thought at a time and have terrible problems with memory. For that reason, this post is fairly short and sweet compared to my usual and has taken two days on-and-off to write which I am doing, mainly, to get my thoughts in better order and, I can already feel, I will need a recovery period once its done.
My sensory sensitivities are also amped up (raw nerve endings, noise sensitivity and vision issues) and my dysautonomia symptoms have been particularly bad (palpitations, tachycardia, erratic heartbeat, dizziness, breathlessness, orthostatic intolerance, chaotic temperature regulation etc.) plus I’m having an increased number of muscle spasms, cramps, nerve tremors and episodes of lost grip or banging into things. Gastrointestinal issues too, though these can be so “chicken and egg” during a flare that its hard to know if they are are the trigger or a symptom of the flare-up. I wanted to outline all of these factors as they seem to be fairly typical of most descriptions of ME and they certainly flag up that its so much more than “just” fatigue!
So what could have triggered this episode. Well, there have certainly been environmental triggers etc. this week such as going out to a concert (my biggest in over 3 years…although “all” I did was sit and listen to music) and then the very miserable, dark weather for the time of year (I am being forced to use my SAD lamp as I write this, at a time of year when its usually been packed away for the season). Yes, this dreary weather is really getting me down, meaning serotonin has probably taken a hit, which will certainly have an impact on health. The sun has also been extremely active, with the most severe GM storm in almost 6 years and another x-flare early today (29/1). However, these feel more contributory than causal as they would normally only trigger a mild flare, not such a major crash.
Narrowing things down, I’ve only ever had this depth of a flare-up, where the exercise intolerance and post-exertional malaise are this persistent, just 3 times before:
- Once on the back of a flu jab during a period of very heightened stress (the precipitating event that led to ME in the first place).
- Second time, following 2 major surgeries in quick succession, one of which tampered majorly with my hormones (the crash that followed lasted many months.
- The next time was following the removal of all my mercury containing dental amalgams, after which I had a sizeable crash, lasting many months of reduced physical and sensory tolerance, and developed new symptoms such as electro-hypersensitivity.
There are 2 obvious themes in common here, being extreme stress and mercury exposure and perhaps these are likely culprits, so let’s look at them one by one as a lot of other people with ME seem to have also noticed a link between flare-ups and stressors or toxins.
Stress
Anyone living with ME/CFS will likely agree, stress is one of the very worst things that can occur when you have this condition and may well have been an initiating factor when it first occurred, perhaps wrapped up in some other triggering event such as an accident, injury, virus or bereavement. When it comes down to it, all these kinds of triggers amount to a version of significant stress. One of the theories about ME is that it marks a change in the way a person responds to stress, following a precipitating event, so it might not take such a significant stressor to trigger it in the future.
Moving house is right up there with some of the most stressful of stressors and that’s where I am right now, only, I don’t appear to be moving very far at all. Without going into all the “ins and outs” of our situation, selling-up and relocating is proving to be an extremely stressful, disappointing and demoralising process in the current economic market. Added to this, I have all the added stress of being an autistic person faced with uprooting from my safe zone of the last two decades and (as I have come to realise these last few weeks) this is one of the very worst combinations imaginable, which is probably why I have moved very few times in my life.
This is because routine, predictability, feeling in control of things, being able to visualise an outcome and then (minutely) plan for it are some very key requirements for my autistic mind and nervous system. You could say, these things are foundational to my very wellbeing. Not being able to foresee if we will move, when we will move and where we will move to (in essence, mostly being left up to chance) is not putting me not a good situation at all, in fact I would go so far as to say it has thrown me into a long-running episode of fight or flight, which is the very worst thing anyone with ME could put their nervous system through, even for a short time, let alone when it is dragged on for week after week, as it has been so far, and with no end in sight. The sense of having lost all ability to visualise the immediate and longer future is deeply ungrounding to me.
Add to all this pile of stress the factor of having to communicate with so many more people than usual and an endless procession of strangers coming through my house and, its fair to say, I am taking some serious collateral from this house-move project in terms of my health. One of the things I’m really struggling with (and which I have noticed often seems to precipitate a deepening of symptoms) is reading the social cues and body language of people who view the house. More than once, I’ve been crushed with disappointment and bewilderment when viewers that have seemed to indicate, very strongly (on lengthy or multiple viewings), an intention to make an offer to buy the house have abruptly decided not to proceed or even disappeared without returning their calls. Given the effort it takes to prepare for each visit and the toll this takes on my stamina, especially if I am the one conducting the viewings (which is sometimes, but thankfully not always, the case), the anticlimax can be hard to take at the logistical level but the biggest effect is deep in the psyche, where the lifelong struggle to understand allistic people, wrapped up in the countless emotional wounds, the accumulated hurts and rejections, reside. Again, this points to a lifelong struggle with interpreting neurotypical behaviours and a deep-seated infuriation and disbelief that they can be so apparently duplicitous and misleading (even if only fuelled by “politeness”), even so-often lacking sufficient empathy to let me know they have changed their minds but thanks all the same.
This degree of non-compute and eternal frustration with other people’s behaviours is such a sore point, a version of rejection -sensitivity if you like (though it doesn’t feel like dysphoria when it is justified…) that I think I am taking a particularly heavy “knock” from it now that the outcome matters so much to me, and because I generally avoid dealing with people I don’t know very well. Added to cerebral exhaustion from overthinking everything, it’s fair to say that, in my case, heightened and unmitigated stress would seem to be a prime suspect for my current ME crash!
This makes me wonder, again, how many such “autistic” factors may underlie chronic conditions (as I have talked about more than once before), as an expression of intense inner frustration, a need for a different environment or circumstances than those that so-often present to us and a generalised feeling of not being able to cope with how things are. Stress happens, to me, as an autistic person, in so many other ways than to a neurotypical person, with a wide range of stressors and triggers that don’t even seem to register to a “normal” person, and that takes its toll over the course of a lifetime. I certainly feel more “autistic” in the midst of an ME flare and find it much harder to engage with people, deal with situations or come out of my shell.
Mercury (and other environmental toxins)
Environmental toxin exposures are another commonly identified trigger for ME and, I would say, especially mercury because it is just so lethal and hard to get out of your system once it is in there. I have long suspected a childhood exposure to mercury (for which I have my reasons), possibly why I then reacted so strongly to the vaccination that triggered my health crash in the first place (see my bio) since vaccinations such as the flu jab can contain aluminium, formaldehyde and mercury as thimerosal. Incidentally, there are many hypotheses out there about a link between autism and higher mercury levels in the body. If mercury levels going up trigger, say, more of the experiences of autism that feel harder to cope with or are in direct clash with “the world” and its allistic expectations then increased stress, as a result of toxic load, could be another factor to consider.
Mercury can go very quiet when stored in the body but anything that tops it up or disturbs it can start-off the nightmare of symptoms all over again and I am well aware that the removal of oxalates from my body, by following a low-oxalate diet (see other posts on this), may well be disturbing some of the mercury that was previously stored in my body. Mercury (and lead) can bind with oxalates to form crystals in the bones and tissues of the body and it is these crystals that my body is currently shedding so this could be a likely risk and one I need to be aware of.
Great Plains Laboratory (providers of the OATs Test) refer to this risk in their article “Oxalates control is a major new factor in autism therapy”, stating “It would be interesting to see if increased elimination of heavy metals occurs after oxalate elimination by antifungal therapy and low oxalate diet”. Well, I am currently running that very experiment in my own body and it could be a factor in my flare-up (lots of data exists on the link between mercury exposure and ME, see below), which means I need to consider adding in agents to chelate mercury out of the body and also make sure (as I should be doing anyway…) not to rush the process of oxalate removal!
This is only adding to other concerns I have that, having returned to eating so much fish after having been vegan for so long, I may have increased mercury exposure in my diet. In her book on reducing oxalates “Toxic Superfoods” Sally Norton advises “Avoid eating large fish that can contain mercury, especially swordfish. Choose wild-caught fish and favour small fish, such as sardines and anchovies”, which I have been trying to do but when fish has become the larger part of your diet, its hard to avoid some of the other fish and, besides, mercury builds up from even the lower-risk fish when you have as many portions a week as I have been having lately. Could I really be that sensitive to mercury in fish? Maybe.
I am doing this because I am just so resistant to the idea of a carnivore diet (as is so often recommended to those in need of a low oxalate diet since so many plants contain oxalates) however I do admit, now, that I am faced with a tough decision as to whether relying so heavily on fish as my main source of protein is such a good idea, given my track record with mercury, and I may have to at least consider adding in some white meat. This would be such a moral dilemma for me (and another potential cause of stress) but there can be no messing about when you are dealing with a condition as brutal as ME and you really have to do whatever it takes to keep on the level, adhering to a balanced and unprovocative diet being a big part of that. The longer ME goes on and the older you get, the more brutal and impactful its effects so you simply can’t afford to mess about.
So, these are just two possible turns of event that may have triggered my current ME flareup, thus I thought I would share them. Point being, when this happens, its useful to consider “what triggered me the first time I ever had ME occur?” and then “are there any things in common with what is happening right now?”, noticing any patterns. No two people have the same expression of ME, even though so many of the triggers and symptoms are similar, so its important to do your own deep-dive (brain fog allowing) when things suddenly get worse, to make sure there is nothing you have changed recently that may have precipitated the crash, also so you can consider any steps you can take to improve things before they get any worse, for instance puling back from any heightened stress, if that is at all possible. Move mountains if you have to: if stress is causative, ask for help, take a sabbatical, do whatever you can, and reduce that stress as soon as you can!
I, for one, intend to take a break from the house-sale process for the next couple of weeks at least and allow my body to recover some of its core stamina and equilibrium, before this current flare-up is encouraged to take a hold of me, as it has done in the past. Anyone else involved will just simply have to understand as my health is too important to rock like this when I reach my limit and, I know too well from experience, that pushing through will only worsen the consequences. In the meantime, self-care is my best tool so I intend to listen to my body and go with its flow, even if that flow looks a lot like I am not moving at all, for hours on end…because, if that’s what it needs, I need to give it.
Related:
Stress and fatigue (ME perspective)
ME: Myalgic Encephalomyelitis or Mercury Exhaustion?
Toxic causes of CFS – the more I ask, the more I find! – Dr Myhill
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 symptoms that concern you.
Living whole 
Hope some rest, pause, and stabilization with the weather help.
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Thanks so much.
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