With temperatures in the 30s at the moment, I'm really struggling. The slightest bit of sunshine that touches my skin hurts really badly. It feels like nettles have been rubbed all over my skin. And then in the shower; OH MY GOD!! I have the h2o on the coolest it will go, but it feels like boiling water is pouring on me.
I am JAK2-ve, and my platelets run at around 1200. I take aspirin, but nothing else as I have an other chronic illness. That means my haematologist wants to wait for as long as possible before medicating.
Anyone else struggling in the hot weather?
Written by
lynnieb
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I am really sorry you are suffering in the heat, I just hope this so called heatwave passes soon. I feel for you as I am struggling in exactly the same ways. I move two floor stand fans into whatever room I am in and I have not been able to leave the house except at 4 or 5am to walk our dog. I do not wish bad weather on others but my whole body and mind are crying out for relief. I can't take much more of it, which sounds a bit dramatic I know but I have reached my limit of tolerance for this scalding pain.
Sorry for the moan so I will close by saying you are in my thoughts and I hope cooler weather will arrive soon for all our sakes!
Yes it's a real struggle in this heat - although I fortunately do not have the skin problems you do which must be very unpleasant. It's just keeping as cool as possible and well hydrated and just being sensible - I have been cancelling all sorts this last week or so as a lot of the time I can't go out in it at all - fortunately my boss has let me work mornings as I usually work in an office in the afternoon - unbearable in there at the moment!! Just as a PS do keep mentioning to your consultant, who I hope is an MPN specialist about your platelet levels and treatment options as your counts are high and it doesn't help in theses heats etc if our counts are high as the body will struggle - its balancing the effect of treatment (which many of us find is fine I have been on HU for instance for 11 years) and the effect of not having it and dealing with big counts - do see if you can get some assistance as it may help you immensely. All the best
Hi there, yes I am having a similar struggle, factor 50 everywhere, hat, crawling around in the shadows and mainly staying indoors! 😭 I'm an outdoor kind of person, I love fresh air, being forced to stay in when it's so beautiful is awful! The heat is crushing and the sun stings my skin 🙁
1) don’t go out in the sun, if you do - wear long sleeves, long white trousers, and carry a white umbrella or wear a bloody big hat . I do. I get strange looks but I don’t care.
2) don’t bathe or shower. I haven’t done either for 8 years. Wash your hair over the bath, wash your feet in the bath, and sit in about 2 inches of water to wash your nether regions. Your wash under your arms with a flannel.
I’m assured by all family and friends that I don’t smell.
3) buy a really good facial tan if you want some colour. Try Clarins for neck and décolletage.
Hope that helps. I have suspected mast cell activation syndrome as well as PV with mutation. Your haemo is probably waiting to see what happens for a reason, but if you’re unhappy seek a second opinion - we’re entitled to see anyone in the country that we wish to. Suggest you google haematologists specialising in MPN’s and then ask your gp to refer you.
We have to be our own project managers. If you’re finding something makes you uncomfortable - then don’t do it! Seemples!
Hi lynniebe. I too,like many of us a. Struggling. I absolutely can't tolerate heat let alone sunshine. You might want to try a very sexy solution - sit with. Damp tea towel around your neck and just wear your pants and use a fan. Give the neighbours a thrill! Boring but helpful. All good wishes. Mary
Sorry you're struggling. It's lovely to look at the blue sky out of the window. Just pleasantly warm suits me. You can dress up against the cold but it's difficult in the heat. I wear a hat and cover up as much as possible - I haven't got the figure for skimpy clothes anyway!! We've got an air conditioning unit going all the time - goodness knows what the electric bill will be. Luckily I don't have too much reaction to the heat. I like to find a shady spot and sit and read. We've got a lovely breeze today which helps x
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