Afternoon all,
Anyone else lack energy in this warm weather?
On hydroxycarbamide medication, 3 then 2 tablets rotated each day. Really felt it today whilst out walking in the park.
Temperature not really hot, but enough to make me feel drained.
Thanks
Mark
Yes me,I live in France ,we have had 30-40 temps since May .Frankly it has made me exhausted,there is no let up ,no breeze & the nights are not cooler.I cannot go out at all ,never experienced such heat,everyone is weary & unable to do normal work esp.outside.So for us M P N ers it’s a disasterous situation.Have to stay indoors ,shutters closed A C on day & night.I manage to get to our pool when it is dark,the water from the sun alone is 30+ like a warm bath.Just praying for winter !!!Keep cool it’s not good for us to get hot & weary.Best Luck ,U K is due for some hot days the same as we have suffered for months.Best to you.
Hi inca, thank you. Yes it knocks you for 6 when the heat rises. Just i use to work in firegear in this weather and was fine years ago. Well before knowing i had a mpn. Keep cool and stay safe
Thanks
Mark
Me too ,heat was never a problem until my P V,but the intolerance has certainly worsened in the last few years.I am PV 12 yrs now ,take Jakafi.We also must drink at least 2 1/2 litres of water per day.Keep cool carry a water atomiser too that helps.I spray my dogs as well to help them thru this awful ‘canicule’ it’s called here,Dengerous heat.Best to you.
Hope you get cooler weather soon. So glad we moved back to Uk . I’m hopeless in hot weather. July and August used to be bad enough in SW France for me. Friend there says it far to hot for her this year. Hope you can keep well and cool down as much as possible. I remember being like a prisoner in the house as was too much to go out. We are hot here in Devon but have a sea breeze. Hope all people with MPN s are staying well. I’m having first venesection Friday as Heamacrit showing too many reds now on top of high platelets fir many years . Not looking forward to Friday.
Thanks HazeblueYes france and spain suffering with hot temperatures at moment.
Do hope devon stays fairly warm for next 2 weeks, as we are visiting for our holiday this year.
Mark
Hope all goes well for venesection x
It’s been a dry spell for a while. The forecast is not showing a lot of rain . Enjoy your trip to this beautiful county. Much prefer here to France. Lived in Lot et Garonne for eight years. Sw France. Enjoyed the time there but for me there’s no place like home.
Yes ,this year has just about killed me. I manage an odd morning on our verandah where we normally spend all normal summmers for eating or relaxing when we can that is..This year I stay in my bedroom with AC,get into pool when it’s nightfall but not much cooler,as you know there are no cooling sea breezes here.My skin is black & blue from bleeding under neath with heat ,& rashes which has never happened to me before.Everyone is fed up now of so much canicule,it’s gone on since May.
You are getting another spell so take care.To be honest I feel like a bat,I seldom see daylight,shutters closed,can’t even open at night still too hot.
Perhaps hanging upside down like our many bats in the barn might help !,,Best to you ,pray for a cool autumn,it looks like that here now ,lots of dead shrubs ,trees shedding frizzled leaves,brown grass & dust..No chance of keeping flowers going even tho we water them.Good Luck Friday ,just had my monthly pris de sang & amazingly H C T is good so is the rest,I expected a bad result as I feel so dreadful.So you never know with our odd maladie.Best to you Sally
Yes so I came off it after struggling to drag my feet anywhere & exhausted when always fit. Eventually Haemotology took me off it due to many side effects. Now awaiting next decision 🙈. I feel great now off it no tiredness.
However I also cannot stand heat or even a glass of red anymore . It’s changed my whole system regarding temperature 🙈
Hu or jakafi
HU only 👍
OkHoping to eventually be moved off HU.
As due to my young age.
But haematologist did advise that HU if tolerated can be ok for long term.
Yes lots tolerate it but I felt like I was bombed out permanently . I then had gastric inflammation & lost 6 kgs I only weigh 60kgs so couldn’t stay on it any longer . I am ET Jak 2 but trying to get Haemotology to refer me to MPN as they are struggling re medication ideas 👍
Sorry to hear that.I am calr +
Was referred to Guys in May this year.
So im being monitored by the best.
If your name reflects where you live, i am visiting Exeter in a couple of weeks.
Any good days out with kids near there? 13 and 10 yrs old.
There is Crealy It’s an adventure park with rides etc just outside Exeter. Mine used to like it . Otherwise in centre of city down on The Quay Canadian type Canoe hire . Nice area for food . Also a climbing wall indoor place . 👍. I hope to be sailing down the Coast with our Sailing Club from Exmouth. See Haemotology 2 mrw & try & get MPN appointment at Guys sometime . Message if you need anymore info . Julia 👍
Thank you.Enjoy your sailing.
I will stick with the canoe hire in exeter
😂Mark
I risk annoying you here, but I do not suffer at all in this heat. In fact the warmer the better for me, I think I've only broken into a sweat once this summer, when it topped 40° dry bulb and a bit over 20° wet bulb temperature.
Winter on the other hand I find crippling, Last winter I was wearing gloves indoors with the heating on full blast!
A genetic thing I guess.
Andy
Ive normally never suffered, but today just felt it a bit. Felt tired even pedalling pedalo.
Bring on the cooler weather, once Ive had my UK summer holiday 😎
I'm heat tolerant, more than most, so far MPN and INF have not changed that too much, even as the INF is messing with other stuff. But I'm from Southern Calif USA.
Interesting question is how are those around you doing in EU/UK with the extraordinary temps. Are regular people also getting droopy in the meltdown?
Hi Epguy.Yes the weather is getting hotter than normal.
We hit 40 degrees a few weeks ago, which I would of been working as an operational London Firefighter on that day, it was the busiest day for London since WW2.
Unfortunately im still off on light duties due to my left eye, since my brain tumour surgery last year.
I was gutted to not be working, on that day. As its the rush of adrenaline that you get on those incidents that i am so missing.
Fingers crossed i will be back operational soon.
We also lack air conditioning here as well
I've read that heat is the biggest environmental killer. Here in Calif the wild land firefighters are under severe stress with so many fires and hi temps. (and not enough pay)
We were in Paris 20 years ago May in a nice top floor hotel room. Hot season was just starting and only a fan was in there. Even I found it warm. With today's heat, I'd think that room is uninhabitable without AC.
You better take care with all your conditions.
Will do, and thank you for your help on this forum. Keep safe and cool,
Mark
Heat is draining for everyone, doubtless worse if having HU-induced asthenia/dyspnea. Very important to stay well hydrated in this heat, especially when you have a MPN and take HU.
I was out all day today at an outdoor amusement park in Southern Virginia with my granddaughter. We walked 6 miles and rode many rides. She had WAY more energy than me. We did drink a LOT of water. Tomorrow is a day at the Water Park. Floating around all day sounds like a much better idea!
All the best,
Morning Hunter Thanks again for your input, always helpful.
Enjoy yout time with your granddaughter.
This heat just wipes me out, but then I am Scottish!
Yes, its killing me. lol Wishing you well.
Wish you all well.Thanks
Hi Smudger,Yep these temperatures are difficult for ET sufferers. I find it’s the humidity that makes the difference, high humidity just makes it twenty times worse. The same in the cold, I remember quite some time ago when working in Finland and it being under -20 and yet I felt colder in the UK where it was barely under freezing. Obviously keep hydrated and have a water mister with you and keep spraying. All the best Paul
Yes but I love the fact that I don’t need to carry macs and thick jumpers in case weather changes.I get up early do what needs to be done then lay in the shade and embrace it.
Although with wild fires only 3 miles away when we had 40* heat it’s brought climate change to my doorstep and I find it quite frightening
I'm staying inside for these four days because it's unbearable outside for me. However I really miss my daily walk so today I put on an ABBA CD and walked on the spot. Altogether (I wear an activity watch) I did the equivalent of 1.1 miles and feel great after it, mentally and physically. I am really surprised as my haemoglobin count was 80 at my last FBC! I did discover that walking on the spot is a lot more vigorous than normal walking! My usual distance is 2 - 3 miles outdoors. Anyway, just thought I'd share this in case anyone else wants to try it.
Well done otterfield.
We are rushing around today, as going away tomorrow.
Usual last minute panic.
I use to do the step test in my garage, up and down for at least 30 mins.
Any exercise is better than no exercise.
Keep cool
Mark
ET and tiredness
Tiredness 
Heat
