I’ve not posted on here for a while, mainly because I always worry about coming across as moany, but today I wanted to moan, so here goes.
We are currently experiencing a heatwave. Now as a gardener I know that plants need sunshine, and as a human I know that we need some exposure to sunlight, but unfortunately, not all humans can tolerate hot temperatures. I know that this might come as a shock to those who love the sun, worship and crave it, but unfortunately some people have medical conditions or are receiving medical treatments that mean that high temperatures can make them ill, sometimes very ill. For hubby, brain surgery for NF2 tumours has caused damage to his brain stem and hypathalamus. He’s also on chemo. All these things means that he can’t tolerate heat. For me, it’s the EDS and POTS which mean that I cannot regulate my body temperature when it’s above 24 degrees C.
When the thermostat rises, I have no choice but to make sure that I’m in a cool place, with access to a fan, ice packs and pillows, and when it gets close to 30 degrees C, an ice cold bath. Without exaggerating, I am constantly fighting heat exhaustion, and on too many occasions, have had to be brought back from the brink of heat stroke. For sun lovers, and those who’ve never seen anyone who experiences this, they seem to think that we’re moaning, that we’re just a bit hot and we should in the words of Peter Kay “just eat a Solero”. I wish. I really wish that eating an ice cream were all that it took. I hate not being able to travel to warm places, or to enjoy the sun here at home like many people do. I hate having no choice but to stay home after 11am so that I can ensure that I don’t get ill and collapse in public. I worry a lot that in the future, I won’t be able to find work that would accomodate me needing to keep cool – this is one of the reasons why I am fairly sure that I’ll go freelance once I have the PhD, so that I can manage my health without feeling as if I’m a liability, something which people with disabilities and chronic health conditions are often made to feel like. I worry too about people thinking that I’m being fussy, that I’m making it up. Sadly, empathy is often not forthcoming for invisible disabilities, even from those close to you.
Fortunately I now have sveral people in my life who don’t make me think as if it’s all in my head – (yep, I’ve had people say that in the past), and oftentimes this is through them having seen me when I’m not well. Strangers too have also stepped up to the plate. I recall a train journey last year where a man I had never met realised that I was in distress, and whilst everyone else ignored me (despite me not being able to stand up, and having spent the journey vomiting in the toilet) he helped me off the train and ensured that I was delivered into hubby’s capable hands. Other than those few people though, the ones who understand, I tend to make plans with as few people as possible during the Summer, so that I don’t have to cancel, and so that I’m not made to feel pathetic. I wear a false smile when people say “oh isn’t the weather lovely”, rather than being honest and then being seen as a grumpy old woman. I make sure that I don’t have to do anything too taxing intellectually, and that physically demanding jobs are done earlier in the year. Summer is very much something that I just have to get through. And it’s not just me who feels and experiences this. People with MS, other neurological conditions, anyone on chemo, they’ll all be suffering. So when it’s hot outside, spare a thought for those who will be debilitated by the heat.