It’s classic at this time of year that I have some sort of health dip as the seasons change. Temperatures have suddenly dropped from a very comfortable 23 – 27 degrees early in the week, sat in my garden most days even when overcast (its where I prefer to paint) to a very icy feeling 12 degrees since Friday (by contrast…and because I’m extra sensitive to cold).
On top of this sudden change in daily circumstances and temperature, there have been a number of overlapping trigger factors that can each tip my health (will talk about those below); the point is, there has been a crash or contraction. When those happen, whether to our physical health or our circumstances (this year being point in case as many people’s lives have become more limited or restricted than ever before) its all too easy to use the excuse to move less than normal; but my urge is to consider it an opportunity to move even more, and to see what surprising benefits movement, of any kind, can bring you in those circumstances.
Suffice to say, in my example, this was a one plus one plus one kind of week…and it got to my health. By the end of the week, I was experiencing burning rash on my face and chest area plus a wasp sting that is now two weeks old flared up (again) to intense levels of burning reaction from shoulder to elbow as though it had only just happened (all a sure sign of mast cell over-activation). Temperature regulation went out of the window so I was hot then cold and wearing socks and hat in bed then having to throw open windows. There was numbness, tingling, trapped nerves and odd sensations in legs. My IBS and some of my old food sensitivities flared as they always do when I am even subliminally stressed, my back and hip pain was steadily increasing, crank by painful crank, and my pelvic floor became unstable as ever it does, with referred pain into all my pelvic organs, including bladder.
My elbow, wrists and finger joints quickly joined in, so that using my hands to grip a paintbrush became far less easy to take for granted and there were one or two accidents where I lost control of what I was meant to be holding onto, plus I began feeling so very tired and eye-blurry all the time (yet quality sleep through the night had become elusive). By Friday, my hip was in severe pain and, yesterday morning, was on a par with what I term the Big Crash of 2019. I could hardly lever myself out of bed, bend to reach my own feet or find any position in which to sit or lie down comfortably. The issue with EDS pain is often over contraction rather than bagginess as muscles attempt to overcompensate for other weaknesses and so where, say, pelvic floor exercises are the recommendation for women of a certain age, our task is to relax and release, in order to let go of the locked-in tension and pain…but try doing this when you are in constant agony and hardly able to move.
This is Ehlers Danlos at its almost worse; where it renders you handicapped in some very everyday ways that, individually, could seem like anyone else’s muscle strain or pulled shoulder but put it all together with the internal issues “out of sight”, such as bouts of constipation or excruciating nerve entrapment, irritated stomach and heart muscle pains and you have a severe situation. Having this return for the first time in several months could have made me so miserable and despondent…if I had let it get to me.
But I didn’t! Last year, when it happened for the first big episode of this kind (there were other types of flare-ups that preceded this…chronic illness is seldom static), it was The Unknown Quantity. At the start, I had as yet to get to the point where it was even labelled EDS so I was in the dark as to why all my elastic bands seemed to have snapped and were in such excruciating pain that to even go to the bathroom or digest food was an excruciating agony. Later that year, once I had realised and come to terms with what I was dealing with, I optimistically set the intention (based on many other phases of my health travels) “this too shall pass” and, with time, patience and informed care (provided by myself for myself…including listening to my body whilst never once losing faith in it) it did pass and get so much better that the deep pain of the previous year became a dim and distant memory. By February, seven months after the initiating event, I was not only walking normally but had taken up Nordic Walking as a regular activity and, by April, had initiated the daily dance routine, straight after my morning yoga, that is still my daily standard and my absolute joy.
So, again, this week, that phrase was dusted off…This Too Shall Pass…and I continue to hold to it. I had demonstrated to myself once that a dip is just a dip, its not the new normal (and how we all need to remember that in so many aspects and arenas of life) and I would do it again. Last time, I had to go through it all in order to come out of it even better, stronger and wiser than before and one of the greatest things to come out of it was an even more robust set of routines to do with moving the body daily. So why sacrifice those daily routines now given they keep me so much more mobile than I would otherwise be and provide so much benefit and pleasure…and let’s not underestimate the pain relieving power of endorphins!
It would be easy, of course, to say “sod it, I can’t do that stuff today” as soon as the pain became severe, following another poor night’s sleep, and slink off to the sofa in my PJs to spend the day feeling sorry for myself in ever worsening pain. Or, I could just go to that room and see what I can do…which will, likely, be way more than I started with after ten or twenty minutes of limbering up, listening to my body cues, patiently allowing it to lead the way and speak to me without words as to what feels better than before.
Because, if there is one thing I have learned on this long haul of 15 years’ duration, its that stagnation and lack of movement Only Makes Things Worse! Much worse!!!
I was browsing the EDS forum that I belong to the other day and someone having a crash somewhat like mine, by the sounds of things, had posted to that effect and asked for answers as to what she should so, only she wanted the “wrong” answers, to raise a laugh, in the hopes of cheering herself up. Beneath, a long and growing thread had started taking shape, made up of irreverent responses such as “try pasting turmeric on your face” or “do yoga”, “think positive thoughts”, “meditate it away”, “just get up and move, go out for a run or do some exercise”, etc. These were obviously meant sarcastically as some sort of backlash at the well-meaning comments of all those who had ever failed to understand just how painful and debilitating EDS can be (and I get it…flippant remarks such as “stop thinking about it so much” can make you want to commit murder) but at the same time, how many babies were being thrown out with the bathwater?
As in, perhaps such “woo-woo” advice as mediation and herbal remedies does sometimes sound overly optimistic, lacking in logic or, annoyingly, come from the mouths of those whose health is near-perfect and who therefore don’t really understand what this kind of pain and debilitation can feel like or do to your morale in the long term. Yet there were so many positive remedies and help-mates being included in that list…to be scoffed at; methods that I actually use and find so powerfully helpful, perhaps turning people off them even before they had tried them in the process. For instance, perhaps not smear turmeric on your face(!) but, yes, take it or (rather) the active ingredient curcumin, which I have increased my daily dosage of this week and take as a regular for its powerful anti-inflammatory support, especially as golden mylk before bedtime when it near guarantees me a better night sleep. Yes, do yoga…perhaps not at the standard that would pass for a sexy Instagram post (as I’ve written about before in my post Yoga-ish) but at the level where, in the privacy of your home, it really helps you to keep your body in balance and moving!
In fact, without it, I would have caved in to far more severe symptoms years ago and the same now goes for the dance. People who hear me say, in one breath, I have EDS and then mention I do a daily yoga or dance practice might think I don’t really have the right diagnosis or only have it very mildly but that is their prerogative. Really, the more I hurt or feel limited, the more I need to go to my mat and it was doing mat work several times a day that got me out of that last health slump a year ago. The dancing I do is also to my own intuitive pace, method and intensity…so of course, it varies every day…but I have no quibble whatsoever declaring that it has been the very best thing I have instigated this year, perhaps ever; no exaggeration.
In the space of just five months, I have seen tremendous changes in my body’s functionality, weight (especially regarding the “problem” weight that had been, hitherto, gathering around my middle…right on top of one of my worst pain areas), flexibility, stamina and core strength. I can now touch my toes easily and with grace, in almost the same gliding movement as touching the sky well above my head…on a good day…and make side lunges and sweeps that look like an elaborate, elegant, warrior pose. My leg strength and stability has massively improved which, I notice, is assisting me hugely with this year’s crash and it means I can rely on my legs to lift and lower my body at times when there is just too much pain for me to tense my pelvic floor or torso area to manoeuvre myself. My ability to stand for more than a couple of minutes, which used to be one of my biggest challenges and would send my head into a spin, followed by crashing exhaustion or even a head-cold faint, is now so easy, on a good day, that I can stand in mediation to the rising sun in my garden for ten minutes, or to chat to a neighbour that hollers me over the garden fence, or to hang washing and other such tasks that used to exhaust me almost immediately due to the standing-up component (classic POTs symptoms). These are BIG life enhancements, and there are many more that I have not listed (and will probably think of later, once this is posted). So, I’m NOT going to surrender my daily dancing for anyone or anything, including a flare-up.
And yes, it goes without saying, surely, that a positive mindset is our very best and most powerful ally in any situation that is challenging us yet that seemed to raise a long cynical laugh in the forum. But then, misery loves company…so it ends up with lots of company, as comedians do, but very little progress and I have always been a loner who prefers results. I know going after the endorphins that come from laughter can be as important as any other means of getting to them but not at the expense of making fun of some of the most potent, if unconventional, means of healing. Part of it, I realise, is the longing to be heard and to garner some sympathy from others who relate but at what cost if we sabotage our own healing powers. Cynicism can honestly be one of the worst enemies to recovering health because our recovery relies on positivity, open mindedness and faith.
So, even at the height of so-called immobility, I’ve made it to the yoga mat every day and I’ve done my Energy Medicine routine (even if I can’t quite make that one long sweep down to the floor), I’ve meditated for 20 mins or more each morning (and probably again later in the day; as long as the chair is comfortable and supportive, there is no bar on this for anyone and its such a big helpmate) and then I’ve done my dancing…whatever this might happen to look like today. Even if its just swaying from side to side to the music, or a gentle alternate foot stepping movement, with feeling, that’s enough to soothe and help heal the body, offering it an outlet and, usually, once I warm up, there is way more in me than just that. Then, throughout the day, whenever I get particularly stiff or locked-up in the kind of pain that sets teeth on edge, I go back in there to do a little more, and then again before bedtime. Seriously, it’s far better than any pills I could pop; and the effect is cumulative.
One of the keys I’ve learned for myself is to stop fearing that I could harm the body; because if I listen to the cues, and don’t force anything, just allowing what feels good, my natural instincts take over the proceedings and seem to know just want to do. So consider getting into that flow of trust, like a higher dialogue between trusted friends, and focus only on achieving balance and ease, letting tension out of the body from all places that it is found. Once given its free rein, the body will become your best movement instructor and express things, without words, that would otherwise have remained locked in as pain. Tears may flow; that certainly happened to me this week, but then laughter or unexpected joy or exhilaration may also come of it. Getting warmth and blood flow to those hurting body parts, and oxygen replenishing breath deep into the body, is more crucial than ever when you are in a state of chronic pain and this does so easily, without having to focus on the task since its the natural side-effect of self-expression through movement. Then, as I said, those endorphins start to flow like from an open faucet and then you can ride on the healing benefit for hours or, cumulatively, many days. As I said, no opiates required.
Incidentally, in that regard, my allies are (as I said) curcumin, also boswellia, l theanine, CBD and a range of herbal teas including lemon balm and liquorice. These help enormously, especially an l theanine (capsule) plus CBD (oil under the tongue) combo in times of especial need, also frequent use of Doterra’s Deep Blue on the parts that hurt, and a heat pack from which I am nearly inseparable. Memory foam mattress and pillows on my sofa and a conscious attitude to postures I try to sit in (no over-compensating in other directions, away from the pain zone, as this only transfers or grows the problem to other body parts) are the finale of my “kit”, along with (dare I say it again) that positive mindset, steering away from conversations or attitudes that might bring me down and focusing on things that bring me joy.
The other movement thing I never compromise on is my daily walk, however bad it gets; if I can put one foot in front of the other, I go and, in fact, I rely on these walks for my morale. That has become a sticky subject lately as my elderly dog is no longer able to jump in the car so I am forced to walk him in my least favourite open space nearby, out of the one-time broad choice of all the lovely places I normally go, so there has been a Groundhog Day element to it all lately as I set off on this less-than-inspiring route each day. Yet, I’ve done it…and I’ve done it with as much enthusiasm and thoroughness as I can muster, even when the weather turned suddenly cold, windy, rainy this week (well wrapped up, of course) and have already managed to find new angles and vistas on a circuit that could otherwise have been as dull as dishwater, focusing on all the positives that can still be found in any natural spot and feeling grateful that I have this resource so close to home. Then, when I can (and today is point in case…even though I struggle to stand/sit or bend and putting my boots on takes a record amount of time) I go out with my husband for a second walk without our dog, just for the sheer enjoyment of it, yes even though its bitterly cold out there and I need, at all costs, to keep my back and other extremities very warm to avoid more tension and pain. A longing to see some of my favourite spots again (sorely missed these last few weeks) is my main motivation for doing this, but also the desire to walk for walking’s sake plus the knowledge that keeping moving is the best gift I can give to myself and will surely see me through this lean patch all the quicker.
In recent months, via that dancing practice I go on about so much, I have come to intimately know my body more so than at any other time in my life; like a sort-of sensory map that has become all the more visceral to me on the inside. I suspect this is an important tool in healing any kind of physical ailment; and a powerful tool to visualising one’s own healing progression, not least when setting intentions. As I feel fascia glide over muscle, or one group of muscles activate and another release, or notice how my often tender and hesitant ligaments and tendons feel so well supported (by my listening to my pain and the left-right body balance I strive to keep at all times) that they are encouraged to engage just as I want them to, without over-extending, it feels like I am learning some sort of craftsmanship in what it truly is to be physical (an elusive skill all my life). It’s been somewhat like learning to play a new instrument; familiarising with all the notes, the nuances and then how to put them all together to make music. Looking at my hypermobility as a gift (since it allows me to move in some wonderfully creative ways; Snake Woman is what I laughingly call myself some days) I can anticipate how, strengthening these abilities, whilst ensuring they do not become locked up in pain and obsoletion, I am evolving my health, not succumbing to some dire situation destined to get worse as I age.
When I look forwards in time, I don’t see (what is the presiding mindset about most chronic pain conditions) an inevitable slide into even more pain and limitation, hastened by the ails old age. Rather, encouraged by all the improvement I’ve felt, and can see in myself this year (and others can also witness…I have been getting so many uninvited comments about how fit I am starting to look) I imagine some unforeseeable transformation into a new kind of body up ahead; one in which the ability to go the extra yard in my flexibility is not a handicap but a bonus and a joy because its foundation is in core strength and healthy balance, which is more than just a physical state but also a mental and emotional attitude; a harmonious yin-and-yang union into wholeness. No less so in all aspects of my life; because it is all an adventure in growing, improving, transforming, exploring the new, striving to reach unimagined potentials, daring to hope and to see beyond the limiting expectations set by apparent circumstance or others. My physical foibles don’t render me unentitled to such a future but even more prone to be open minded and eager to embark on the journey because there are no rules where I dwell, it is all a giant leap in the dark so why not make it a leap towards what I prefer to envision and thus create.
What causes a sudden, otherwise inexplicable, health contraction?
Factors that can trigger a health crash, in my case, are wide and varied but the net result is the same…when there is one plus another plus another, etc, the combined effect can be to push health into a reaction that is the body’s response to “too much”.
In this case, there were several overlapping factors, one of which (as I mentioned) was an abrupt change in the seasonal temperatures and, on the back of that, my happy daily routine of working outdoors more than not. Central heating can also impact my health due to the drying of the air and other factors, damp + autumn = mold can be a huge influencer, and darker days are a big factor, as for anyone super-sensitive to circadian cycles (we all are, at some level).
In other words, there has been the sudden arrival of some of the stressors that typically send my mast cells into over-reaction mode (I intend to write much more on this topic soon as this latest “crash” inspired me to take a very interesting plunge into the Mast Cell Activation Syndrome I’d been averting my gaze from until now, noticing how it matches up with some of the most sticky and perplexing aspects of my health).
Another was a dentist appointment, guaranteed to push stress buttons in a time of pandemic but even more so for the fact an x-ray (I’m minutely sensitive to radiation…exposure triggers off some of my most severe symptoms) was inevitable. It was the day after the x-ray that my facial, neck and chest skin began to burn quite severely and my other symptoms became much more severe.
Then, of course (none of us are immune to this) some emotional/circumstantial triggers came on board. We have just decided to cancel the 5th attempted holiday of this year due, this time, to an unwell dog (and much sadness and adjustment around that too). This year, for us, as for so many has been interlaced with grief and disappointment as plans large and small have had to be paused, postponed or cancelled altogether and the cumulative effect can be hard, on top of other factors.
Its also the week of the Autumn equinox and equinoxes can be a major trigger to anyone sensitive to ionic radiation because of the way cracks form in the earth’s magnetic shield at these times of year (there are various articles on this phenomenon if you look it up), allowing cosmic rays and whatever other effects of “space weather” are out there to cascade down into our everyday atmosphere at far lower altitudes, bathing us in their effects. An influencer that is invisible to many, yes, but acutely noticeable to you if this happens to be one of your particular sensitivities (could be as subtle as an increase of migraines, if you are prone, or suddenly interrupted sleep patterns in March or September).
Given this has been a very busy week for the newly birthing Solar Cycle 25 (we’ve had the lot…solar winds, geomagnetic storms and solar flares in this landmark week and much more expected in the next few days) its been quite the equinox this year. There were several nights when I struggled to sleep past the hour before dawn, when ionising radiation is known to increase as the night-to-day transition begins, and could literally prop my pillow behind my head and sit back watching the northern lights play out in my closed-eye electricity show; a phenomenon that is little talked about but has been mentioned in some of the literature on highly sensitive people (specialist on the topic of sensitivity, psychologist Michael Jawer, mentions it in his book “The Spiritual Anatomy of Emotion: How Feelings Link the Brain, the Body, and the Sixth Sense”).
Such high sensitivity is no small factor in mast cell activation syndromes and, as I said, I want to write much more thoroughly on this topic very soon but it can be something as small or apparently inconsequential as a perfume or new chemical introduced into your environment or hidden ingredient in food that acts as that first trigger to the collapsing house of cards, and then the rest jumps on board. I just wanted to address these kinds of overlapping “causes” because they can seem all too little to some people to set a pain episode in motion but those of us who experience know that they can be as consequential as taking a physical hit such as a whiplash or sports injury; a factor that still mystifies many conventional doctors but not those of us who have to learn to live with them.
This blog, it’s content and any material linked to it are presented for informational purposes only. They are not a substitute for medical advice, diagnosis, treatment, or prescribing. The material and opinions shared are anecdotal and should not be considered to be medical advice or diagnosis. This article does not constitute a recommendation for the treatment or choices described and the effects related are my own anecdotes, not a prediction of how anyone else might respond. I do not advocate taking any of the supplements referred to and suggest that you conduct your own enquiries with medical advisors. Please consult with a licensed healthcare professional if you have or suspect you might have a health condition that requires medical attention or before embarking on a new type of exercise or physical activity.