How do we cope with the hot sunny days ? I think my thermostat has packed up !!

How do we cope with the hot sunny days ? I think my thermostat has packed up !!

When the weathers cold I get stiff in the joints ,and my feet get numb with circulation problems .T hen when the tempreture rises I get hotter and hotter and so wet with the sweating I sit in the shade ,Don't tell me it's not to do with the blood problem !

I used to love the warm sunny weather when I was younger .Always had a tan in the summer ,,remember those times ??? Twinkly 😂

19 Replies

  • The same happens with me Twinkly, exactly the same problem , my husband say we will never have a burglary as once they look at me at night, winter and summer, starkers' on top of the duvet , with just a pairs of fluffy red bed socks on they will run a mile. lol

  • Im the same, not too bad in the day but at night as soon as its a bit warm im reaching for the windows lying on top of the duvet. My wife is so nesh she is wrapped up tight and im there like a hot water bottle.

  • Oh yes Twinkly,now stay in the shade,feel like a Pale Face,as all my friends and neighbours are swimming and tanning....after my face carcinoma ,there is no way I am risking another.Glad your knee op was a success,wish I could stroke that lovely dog,Best to you,pleased you are back with us.Sally

  • Lovely picture Twinkly, know how you feel, tried to enjoy the sun at the weekend, slapped on the high factor sun screen, but gave up after Twenty minuets and went in the shade, as my whole body was on fire, and not sure why never experienced that before thought it was just me. Now worried that when the summer comes it will be worse and will be unable to enjoy, like you I always had a good colour and it sets me up for winter, plus I love to garden, I wear a hat, but will get so hot with loads of cloths on, even the nights are bad enough have invested in a ceiling fan which is great but poor hubby freezes and goes in another room, 😅

    Anyway know how you feel, I love the sun makes me feel so good and makes me forget that I have an MPN.


    Ps: what's the dogs name it is stunning.

  • The dog is my Sasha .a Russian I bred .he is 10 years old this birthday .he has been a pat dog visitor since a puppy ,,,super gentle temperament pal !!💜

  • Oh he looks an amazing dog, he does not look 10 years old, so do you take him into nursing homes and schools places like that? Truly a lovely looking dog.

  • I took him to the semina at St thomases .he was a star .hes been all around my area on visits ..he's a volunteer p.a.t. Dog .as well as a good dad to my pups .

  • That is lovely, I have read about dogs that go into hospitals so that patients can pat them it is very calming, and he looks a very gentle creature. How many pups have you got now.

  • I'm not breeding Russians now .they have very many pups in a litter .its heavy ,hard work .then demanding having new owners continually visiting .im busy with tiny poodles .lighter and easier .

  • Look forward to seeing some pictures of them soon.

  • Yes, I feel exactly the same and unless it's really hot I still need to wear socks with nothing else from there up.

    I'd be interested to know if this is our condition or medication. Anyone on here that does not take hydroxyurea or other med's?

  • The weird thing ive had the last couple of weeks or so, not every night but some is REALLY hot feet, like they are on fire at night in bed.

  • I'm just the same as you,hate the hot weather now. Also it affects my breathing .

  • To help feel better .drink lots of filtered water or proper juice .the more the better ..or tea not coffee .eat fruit and salad .all growing plants with leaves .also highly coloured vegetables are so good for our circulation problems .can you tolerate spin age ? It's really good for those with the dreaded anaemia ! One of the side effects of ruxulitnib ,but I combat it with the healthy eating every day .most people hate liver .but just tolerate it once now and then it really helps balance the blood results ...Iv been good for 4 years ..even tho Iv had surgery .managed to recover really quickly .amazing my specialist doctors try just giving up tins and packet food will notice the difference ....twinkly ..xxxx💜

  • Hi Twinkly

    I'm exactly the same. The change in season and summertime is playing havoc with my body. One minute I am dripping with sweat and the next I'm shivering like a leaf. Does anyone have any helpful tips for coping?

  • Have you got a picture in the attic Twinkly? You seem to get younger! Gorgeous dog!


  • I'm sorry to say I hate the hot weather and especially direct sun as it makes me feel really ill. We were out at a country show and I had to lye down on the ground as I thought I was going to pass out while the boss went to find bottles of water - always carry some with us now. My haematologist at my fist visit did tell me to keep out of the sun and to avoid extremes of temperature.

    I don't feel the cold, I'm always hot. I've been in meetings where I'm in a short sleeved shirt and hot and others are in wool pullovers. Have problems in the car as I want air con on and the boss wants the heater on.

  • Thermostat

  • Twinkly, hi. So glad to learn someone else was having the same problem as me. My thermostat doesn't work at all. I'm either too cold or too hot. In the summer I stay indoors with curtains drawn in my panties! And have a loose dress to hand in case someone calls. What a frightening thought. Have you found anything that helps with your thermostat? Maybe a good plumber? All good wishes. Mary