WARNING: Contains mild anger.
Like all so-called invisible illnesses, MS is riddled with mixed up, confused and befuddled mis-understandings. It’s bewildering enough getting your head around all those MS quirks when you have the condition, so it’s perhaps not surprising that it is so hard for other people to comprehend. It is frustrating though; it is so flippin’ frustrating when people don’t get it. But then why would they? Why should they? How is anyone to truly understand something they’ve never experienced and, let’s face it, something they can’t actually see? Why do I find myself getting so darn worked up at people’s ignorance towards MS? And is it possible that I am actually more frustrated with myself and my inability to articulate the impact this stupid condition has on me? Or is it anger at my body for constantly letting me down and for forcing the need to explain myself sometimes?
Something has certainly triggered this recent bout of frustration and that something is HEAT.
Heat Intolerance: My most misunderstood symptom; even more so than the invisible need to sit down, or my invisibly bad legs, or the invisible aches and pains and tingles, or the invisible life-zapping fatigue etc. Heat intolerance encompasses all of these things and then some. When it strikes it is by far the worst part of my MS; how can it not be when it is responsible for reigniting ALL my symptoms all at once? In a previous post I mentioned the Uhthoff’s Phenomenon, which is when damaged nerves overheat and block or slow down nerve impulses causing symptoms to worsen or even completely stop you from functioning. Not everyone with MS experiences this phenomenon, those who do will certainly relate to just how painful and disabling it can be. But it is of course invisible. And, more to the point, NO-ONE GETS IT. More so than any other symptom this is surprisingly the one that I have had to try and explain over and over again, a process almost as painful as the heat itself. People are always confusing heat intolerance with simply being too ‘warm’, as if I am a person who just doesn’t like being hot. This couldn’t be further from reality. I actually hate being cold, I always used to love the sunshine and would much rather have been too hot than too cold. Now, when the sun has his hat on (or the radiator has her scarf on) my body fills with lead, my legs are clamped and a foggy mist swamps my entire brain.