Last week we've had workmen on the roof. It's gone very well so far, but it has unexpectedly highlighted my hypermobility related neck issues.
I walk the few metres from my kitchen door to below where they are working, look up in a controlled manner, have a short conversation (e.g. "Would you like a cuppa?" "Yes." "Milk, no sugar?" "Perfect, thanks.") and turn to walk back, and I find my coordination/balance have noticeably gone down a level. My left side seems to take the biggest hit. My good-ish walk out becomes a stagger back. Every time.
It made me realise how the extent to which my current symptom levels are the result of careful management.
In hindsight I've always had neck related symptoms - even as a child. Things like tilting my head up when cycling would always make my legs go wobbly. A couple of years ago I aggravated them so much I landed in A n E with coordination so bad I could try and touch my nose - and miss my entire face, and turning my head slightly made my breathing go funny. It was investigated - nothing sinister found, so we agreed it was probably hypermobility related. A week or so of serious rest, followed by lots of neck exercises and posture awareness and it settled down to little more than phenomena that seems to explain a set of symptoms, and which I can largely manage by being posture-aware and continuing the exercises. Learning that if I only aggravate my neck for a few seconds, the symptoms resolve really quickly has also been very reassuring - but on the flip side, if I annoy it for a longer period it can take a LOT longer for symptoms to fade so I can't afford to be complacent.
My neck has got stronger - at one point I couldn't go on a train or car journey without a neck brace, but now I can manage without and only get a slight temporary increase in symptoms. But the potential for significant symptoms at the nod of my head is still there.
Having said all that, I don't always believe that I have an issue with my neck. I grew up believing that all my hypermobility related symptoms were me being feeble, making a fuss about nothing, and being weaker than my peers. That doesn't disappear overnight. And there has never been a proven problem identified with my neck that I can use to scientifically explain it to myself. (am I compressing nerves? reducing blood flow to specific areas of the brain? is it due to a joint slipping? Or due to a joint bending too far? or something else?). I don't want to be seen as hysterical, making things up, attention seeking.
On one level, I really don't like this confirmation that tilting my head back can trigger significant symptoms.
But on another level, I am reassured that my neck issues really do explain a significant part of why things involving looking up and around really take it out of me (talking to people who are standing up, looking around a museum, browsing in a shop). And I am reassured that my adaptations and coping strategies are helpful. So overall, I count that as a win.