Hot. Hot. Hot. And stressed. : The heat is getting... - MPN Voice

MPN Voice

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Hot. Hot. Hot. And stressed.


The heat is getting to me (compounding the effects of a sore throat this past week and general seasonal snottiness) and making me feel really quite low.

Next week London is due to be hotter than Miami - without the Air Con. I’m absolutely dreading it especially as I have a friend visiting from the US and (quite reasonably) we’re supposed to be out and about. I have minimised trips into ‘town’ and will forewarn etc but if I had the option we would not be moving from the house! I realise I’m feeling quite stressed about it. I’ve never been great with extreme heat and although my counts were pretty good last time someone checked I find myself more breathless than usual and not coping well (other than when staying close to home and behaving like a sloth etc!). Anyone else in the same boat?

26 Replies

Understand completely I have been the same soon as the temps get up near 30C I feel really quite rough, quite disconcerting and say close to home - chatted about it with my consultant this week and it is "just" the body struggling as our blood is not normal and so higher temps challenge that. You can only explain to your friend and adapt travels acccordingly, hopefully your pal will understand a little although I know it's hard as people don't really get it and invariably we look well but of course in reality are coping with a lot. I had this week of work and did a few trips but said to friends I need to be out early and do things and aim to be home lunchtime with good stops en route for some drinks - and as you are in London avoid the tube I would think!! But like you I will be glad when this heatwave is done!!

Ebot in reply to Helpatlast

Oh no, I’m not going anywhere near the tube! Fortunately I have an electric car which for the time being is a plus in central London. Yes, my mate will understand but I feel bad and quite honestly just a bit pathetic. (I guess I’m feeling a bit pathetic generally - when you can’t keep up with eighty somethings like your mother in law it is really quite depressing!!!!).

Aime in reply to Ebot

Every sympathy Ebot. It is extremely tough in the heat. I’m in the north east of Scotland so thankfully temps are lower, about 20-27 but I’m still struggling so can only imagine what you are going through.

Should you be getting meds for your sore throat, sounds quite nasty! Remember it’s easy to blame our MPN for everything.

Take care, ice lollies sound a good idea. Kindest regards Aime x😺😺

Ebot in reply to Aime

Thanks Aime. I’m on the mend. Paracetamol was my friend! Just a bit frustrating to be away and meeting up with friends and feeling like I’d rather be horizontal! I’ve been thinking that Scotland might be a good escape! London can feel like a cauldron. Fortunately I live on the edge of a park and heathland so I really can’t complain (too much!). It’s central London that can be completely vile. And feeling / knowing that you HAVE to go do things. Same day supermarket deliveries and dear old Amazon Prime really are modern blessings!

Aime in reply to Ebot

Totally understand about being there for visitors. My nephew and partner visited from Brazil last fri until mon. Guess when my latest Orthopaedic op was scheduled for - last Friday. With the help of hubby, son and daughter I survived and managed to be sociable for most of the day! Best laid plans............!xx Aime😹😹

Ebot in reply to Aime

Hope you are properly recovered now. Wishing you all the best.

Ebot, your post and the replies have helped me as I find the heat difficult and want to do things but find it too hot. In a way it's a help to know that many of us find it hard, though I also know that some of my friends who don't have this chronic condition are also finding it hot. When on holiday in Dartmoor recently we took trips to the coast as there was always a cooling breeze there. Thanks everyone for responses to Ebot that also supported me! :o)

Ebot in reply to AnitaJ

Dartmoor is beautiful but I can imagine you were keen to escape to the coast. As you’ll see from my reply to Piggie50 below I only wish I was enjoying sea breezes along Devon beaches. Though I’d probably be swaddled in factor 50 from top to toe. There goes another batty old biddy stumbling along the SW Coast Path. 🤣🤣🤣

Hi Ebot,

Sorry that you’re finding the heat hard going. My daughter lives in London, and she has told me how hard she’s finding it too. So, it’s not just us MPNers finding it tough.

You’re probably under enormous pressure to give your friend a good time. London sightseeing can be stressful at the best of times. Be honest with your friend about how your illness is affecting you. That way you may be able to come to a suitable arrangement.

Mary x

Ebot in reply to mhos61

Hi Mary. I think everyone is struggling in London. We’re not geared up for heat or particularly adept or tolerant of adapting. Life goes on come rain, come shine (but not snow or extreme sun!).

I’m sure my friend will understand - though I’m not sure anyone really gets it apart from the good folks on this Forum. I just feel frustrated and sad I haven’t got the energy to be the host I want to be.

As we’ve all commented before if you’re pretty busy (even if that means running the world from home!) and you don’t look sick it’s hard for people to grasp. Mind you if I continue to slather myself in Factor 50 I’m going to look distinctly unhealthy by the Autumn! Wishing you well.

About time you got yourself down to the coast me thinks! 😎☀️🏖⛵️

Ebot in reply to piggie50

If only! Except of course the house is gorgeously sunny. Not going to be throwing open those doors to bask in the winter sun any more. B.......r Hydroxy. 🙁🤣 I’ll let you know when we escape out West and hopefully we can rendezvous.

Hi Ebot,

this post explains a lot, I was in Orlando last September for my Daughters Wedding the temperatures were 30 plus every day and in the high 30's on the day of the wedding. I hated it spent the 3 weeks outside all right but had 2 speeds dead slow and stop, which meant that my Family were constantly waiting for me to catch up.

I had not realised until now that intolerance of high temperatures might be down to my MPN. We have just had a heatwave in Ireland with very high temperatures in which I have coped pretty well by taking

things easy and at my own pace.

The main thing is to look after yourself

when your Friend visits and take things easy as far as possible.

Best of luck


Ebot in reply to redumbrella

I like your comment about your two speeds. I’ve noticed when I’m out I have this distinct impression in my head that I’m striding briskly about. HA. I only have to look up to realise that my family are out in front, receding into the distance! Am beginning to wonder whether I’ve started walking backwards. 🤣Not surprised it takes me forever to do anything.

redumbrella in reply to Ebot

Just take it easy and at your own pace Ebot and allow life and other people to wait for YOU. Also learn to say no, it is not easy but I found that it helped greatly.

Best wishes


mzmouse in reply to Ebot

hahaha, Ebot, "started walking backwards" you cracked me up, still laughing. Your friend will understand I'm sure. He, in fact. with the heat, may join you in some backward walking. Wishing you a good visit with your friend. mzmouse

Hi Ebot. Know the feeling and I have been struggling too.. drinking LOTS of water. Walking around my house in a bikini, seeking air conditioning, even if that's in the shops 😁.

Also I bought myself a mini cube personal space cooler which you can put next to you. You put very cold icy water in it and itvworks like a mini air conditioner. Might help with the sleep.

Good luck!

Ebot in reply to Mrs_Average

Hydroxy, yes. Bikini, no. 🤣🤣🤣 That I feel would be a burden too far - for everyone. I shall investigate the cube. To be honest I have a nice airy bedroom and for the most part sleeping hasn’t been an issue (any more than it normally is). And this is from someone who sleeps with the windows wide open in the depths of winter (and sometimes can’t sleep because they are intensely cold!!!).

My friend binging me the ice cooler as a gift they are wonderful!! Every MPNer should have one!!

I so agree, it’s very hard dealing with the heat and humidity, I struggle with walking just a small incline and I get so out of breath. I perspire constantly so not presenting a cool calm and collected face to the’s difficult when you are with other people as we just can’t function as they do. So I think you have to plan your trips with your ability to cope, uppermost in your mind. Maybe suggest places they could go on their own ,and then schedule trips that are easier for you to cope with.

Looking forward to some cooling rain 🌧 . So just be a little selfish and look after your own health, we are the only people who totally understand.

Regards Sandy .

Ebot in reply to Stevesmum42

Yes, perspiration (we glow, we don’t sweat!) is an issue in that if my skin is damp then I start itching. But an awful lot of people I find are looking distinctly sweaty and ruffled these days. Oh to be one of those individuals perennially cool in crisp linen (like in the posh ads, ha).

Stevesmum42 in reply to Ebot

No chance of me looking cool I’m afraid, in both senses of the word. .....

Hi Stevesmum. I too struggle with walking up just a small incline. I guess it's important to keep moving but it can be hard sometimes. I think that the less we do, the less we do, but in this hot weather I'm better on my treadmill with the fan going on me at full pelt! It's hard for others to understand when we can look well. So, Ebot, the message is clear, take care of yourself and listen to your body! All the very best, Anita

Ebot in reply to AnitaJ

Anita, you’re right about the less we do, the less we can do. And that’s what scares me. Still not persuaded on to a treadmill however! 🤣

Hi Ebot,

Sorry that you have been struggling with the heat. I wish I could bottle you some of our cool South Island of New Zealand winter air, we were only a degree or so above freezing this morning.

All the best,


Ebot in reply to stillkicking

I think a small bottle of chilled air would be exceedingly nice. However I’m not sure I’m quite ready to return to anything approaching zero temperatures! Never satisfied. 🤣 Have just spent a delightful few hours in a wonderful - and air conditioned - restaurant being royally treated. Have to say it was excellent medicine! And should be available on prescription. 😁

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