I’ve been calling it “energy flu” for decades but what I mean by this is when the environment changes and I sense it through every tissue and fibre of my body and it affects me…affects literally all of me, like I’ve walked in or out of a pressure chamber and nothing is quite normal whilst I adjust. My whole system needs to recalibrate so it takes me offline whilst it’s “wires” try to engineer a way to reconnect with one another, like a technician up a ladder after a lightning strike melts the cable. So here I am under a weighted blanket, unable to move more than an eyelash, my heart rate so low my app thinks I’m still asleep, just letting the playful warm breeze from the window (the tail wind of what I am about to talk about later…) tickle softly over my face, wondering why nobody else seems to have noticed there’s been “a shift” in the night (well at least quite a few people in the village are talking on SM about a power surge and loss of electricity).

My body struggles with gravity every day but today it’s not even arguing and to push through would be to risk having to pay for it in triplicate later, with potentially a very long phase of post exertion malaise and chronic fatigue in the aftermath. I’ve been in much higher pain, for no apparent reason, for days now, like I’ve been pushing endlessly through thick snow with glutes so painful its as though I’ve been bobbing up and down on a bike or a horse (clearly I haven’t…) and just generally increased, pressurised, pain levels all over that have been droning on and on relentlessly. I now feel suddenly released from that (not from all pain, since there always seems to be pain in a symptomatically hypermobile body, but from that particular gnawing, vice-like variety) and feel somewhat like the helium balloon that was amping up and up, higher and higher for a few days, but then got caught on a thorn and has fallen to the ground limpid and here I must stay. So I lie here writing these few words that my brain apparently wants to offload since at least I can type with my thumbs on my phone.

I used to repeatedly ask this question: “why has ‘it’ (basically, the feeling of ‘everything’) changed suddenly” when I was a very small kid, then I stopped asking (getting used to the null replies from adults that had no idea what I was talking about) but, for the rest of the growing-up years, would still point-blank tell my mother, at least a handful of times per year, that everything HAD changed because, to my sensibilities, it felt completely different, was either “off” or “weird” or “better” or “shifted” today, and she would just look at me that way parents do…

These days I have backup, having been a collector of data for so long and made special interests out of obscure things like “spaceweather” that leave other people cold. But at least I know from this curiosity I’ve cultivated that this week has been a potent week for spaceweather with a strong solar wind escaping from a giant hole in the sun’s atmosphere enveloping the planet for days now, blowing warm solar gusts that moved at 800 km/s at the peak yesterday (still 600km/s now) and triggering auroras at both poles plus a geomagnetic storm and co-rotating interactive regions where zones of differently moving energy collide in the atmosphere acting like a lemon squeezer as well as generating shock waves similar to an impact from a CME. I know because I felt it happening first and checked later and there it was…much like I felt completely different this morning so I checked again and there it wasn’t since the storm has now subsided since the very early hours of the morning.

The seasons are also changing and it’s warming up by degrees out there, which is so great in many ways I thoroughly enjoy and appreciate but adds more “dysautonomias” to my symptom lot as winter’s artificial “tightness” in the body, caused by colder conditions, suddenly release to leave me vasodilatory and blood-pooly all over again. POTS is largely a summer thing for me, as it is for many hypermobile folk, and I’m crossing all my hypermobile fingers that this year is far easier on me than last year. This seasonal shift towards higher temperatures and whole different air pressure patterns (variables really affect me) is possibly why the spring equinox tends to require more adjustments, for me, than its counterpart in the autumn which, yes, also affects me but this annual March shift has long been the most challenging transition of my year. This year, I am already noticing how it takes consuming way more sodium loaded electrolytes in my day, to counteract POTS symptoms by increasing blood volume, than it was a few weeks ago, something I didn’t even realise about for a lot of year when I was in the dark about hEDS and POTS!

What I can now postulate is that my hypermobile body feels these things in a more acute, more measurable way than perhaps a normal body would; that in a body so sensitive to minute changes in air pressure and temperature etc mine responds particularly strongly to anything generally considered by most people to be alien and unusual (and therefore completely “off” their radars) because, yes, we are generally buffered from registrable human effects by the earth’s protective atmosphere but my sensitive body seems to feel, and respond to, the effects anyway. I know, from many years of direct experience, that the time around the March equinox is especially symptom “active” for me (the dates stuck in my mind long before I had a theory) and I now know that’s when cracks form in the earth’s atmosphere every year, making spaceweather much more geoeffective down here on earth, especially during solar max as we are currently in.

I know because I feeeeeel it and its experiential in ways that are as impossible to describe as they are part of the very fabric of my body, so here I am having an energy flu day, wrapped up like a sausage roll and unable to coerce my legs to swing over the bed and walk to the sink mid morning…and without fighting it or prescribing anything much except complete surrender and a “comfort” day, I let it be, as part of my rich and variable hypermobile experience of life!

Other useful things I’m noticing (through hEDS eyes; before I realised it was all related to hEDS, I sometimes interpreted and responded less usefully to these things, for my particular body-type):

• This is the sort of day when my muscular/joint type pain is sometimes lower because there is less pressure in the body (on one level, it can even feel quite liberating) so I often feel I want to, or should, do more useful things whilst I have the opportunity, with less rigidity holding me back, but its also a day when my body is going to be more “floppy” and thus prone to injury. If I really have to do something physical, I might need extra supports on joints or tighter clothing but, preferably, if I am able to relax today, it feels much better to be in softer more comfortable clothes for once, at least while the fluey feeling passes through.
• Lying around being a couch potato all the time also isn’t going to work as hEDS demands movement and regular changes of position so getting up at regular intervals and alternating different types of activity will help prevent that other kind of pain and weakness that derives from atrophying into a mass of inertia (yes, I have now got out of bed)! I do better if I cherry pick activities to be especially gentle and low impact, do my daily walking inside the “safe zone” of the house (avoiding many stairs) and work at engaging core stabiliser muscles, as taught by a hypermobile specialist physio, movement therapist or pilates teacher such as the Zebra club.
• Dehydration (or at least wide variations in fluid retention behaviour) often come into this picture. During the intense phase of this week, I seemed to be losing water as fast as I could replenish it (even with electrolytes) and now I seem to have run out completely (or am holding on tightly) because I drink but nothing much comes out. Making sure I keep replenishing at regular intervals, through all stages, is a must for hypermobility and POTS management and can be a key to why certain symptoms happen.
• When big energies come and go, these are transition days and I think its fair to say people with hypermobility (just like those that are neurodivergent…no surprise there are big crossovers here) struggle with adjusting to transitions; another sound reason to take it easy at these times.
• Hypermobility doesn’t just affect joints so watch out for other effects. One that I have is dysphagia, which is laxity of the swallowing mechanism, which can cause me to mis-swallow, choke, feel like food hurts as it goes down, experience painfully slow movement of food in the upper digestive area or have reflux. I certainly notice more choking episodes on days like today and need to be more mindful when I eat, chew more, eat smaller amounts and in smaller bites, take my time, have water at the ready, even be careful when drinking as a lack of sensation in the throat failing to instruct the muscles to contract appropriately (caused by laxity) can cause liquid to easily “go down the wrong way” and have a signal I can use to my husband if he needs to come and give me a quick pat on the back!
• On these flacid days, I tend to have extremely fluid, complex, highly interconnected if somewhat abstract seeming (you could equally say, “hypermobile”) thought patterns that “could” be quite useful and ingenious…but they are also extremely difficult to pin down, like catching a shoal of fish. Using note making apps such as Bear or recording devices to capture thoughts and soundbites helps me to prevent that annoying feeling of having had great insights only to immediately forget them again!
• Executive function is probably at its lowest right now. So I know, from hard experience, to avoid making big decisions or taking action steps that might be considered impulsive or require closer consideration before committing, especially if non-reversible!
• If I can succumb to a gentle “special interests” focus today, to keep my mind pleasantly occupied, that’s usually the perfect fit!

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 intended to serve as 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.