Please share your tips/strategies for knowing how to communicate to others (at work and home) your abilities to manage in the heat when it exhausts. Am conscious of sounding like a moaner 
explain that your illness is caused by inflammation of the central nervous system.
when body parts are inflamed we are usually advised to apply cold compresses.
so really it’s perfectly reasonable to say that you are uncomfortable in the heat and your symptoms get worse.
either that or get an army of slaves to apply cold compresses to you.
management make the best slaves!
Read on FB the met office is declaring a level 3 heatwave. Advice specifically - don’t go out between 11-3pm. Siesta time. I’ certainly not doing diddly during the worst heat of the day
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This heat is making me housebound, I can’t go out until the evening. I don’t realise I am getting too hot sitting in the garden and have been caught out. I then struggled to get back into the house (complete loss of strength and total drop foot), this has happened a few times at the start of the heatwave. Now I stay in as my husband has to help me get back into the cool of the house and we both find it very stressful. Any advise on signs that your body is getting too hot before you realise, or a time limit for being in the heat? I want to enjoy a tiny bit of this lovely weather. Also I don’t understand then physiology of heat and increased symptoms.
ps I am sitting in the shade but it doesn’t help!
It’s difficult. I no longer work for a living (which makes things much easier). But I still find it awkward and rather shaming, trying to explain to people why I just cannot do things when it’s hot. Nowadays, I try to clear my diary during a heatwave and stay where I know the temperature will be tolerable. I find this cross-the-board approach generally works better than having to explain/negotiate on a case-by-case basis; that is just boring, frustrating and embarrassing, as we all know.
I know it’s much harder when you have more demanding work and family commitments then I have these days.
Alison
I just feel like I am always saying that I can’t… although that has just made me think I should always point out when I can? It would sound weird I suppose but??? maybe thats the way forward…