Hi Folks , , having been stuck indoors for long periods I'd forgotten just how hot and uncomfortable it can get. Popped out for an hour earlier and realised I made a mistake. The wheels on my chair were nearly melting. . I was glad to get back home.
Take care if you're out and about coz our MPNS don't always sit well with these temps. . And remember to keep hydrated. .
Cheers Chris .
Too true Chris,we are 36 %, everyone stays in ,shutters closed....dogs stay on cool tiled floors,horses in shaded barn.....we must stay well hydrated too.....trouble is in U K so little sun,people go mad to take as much as they can! Keep well ,Chris ,great you feel up to going out.Sallyx
Hi Chris,
I don't do well in this type of heat. Had to work in it yesterday, and my work is physical....it was a killer. The type of heat today reminds me of the summer of 1976. I remember that year with fond memories, as lovely hot days that never ended. I think I must have coped better with the heat then? I walked the dog at 7.30am this morning and we were both gasping for water when we got back.
Hope you're improving on a daily basis.
Mary
Yes Mary I recall 76 as a 15 year old fishing in the heat until the fairly shallow lake actually all but dried up. . And the herons had a field day. . Take it easy best you can. ,
I agree, hotter inside than out, walk outside front door, warm air hits me in the face. I am retired now, but remember 1976, I was a postman, walking around in shorts, really looking cool with sunglasses and brown legs. Restricted piped water, not able to water plants, toilets not flushed properly? I was young the good days, now slipping down to the shop's, seemingly gallons of still water, getting a taxi to get back home. Lying on the bed, at night, seemingly grilling like a BBQ!
Aye Happy care free days - Twas a lengthy hot Summer but wonderful when I was a young chap and not burdened with post transplant complications which mean sun exposure is a no no. . 😭
I remember 76 well because I was pregnant! Carrying a big bump in that heat was no fun. Funnily enough it feels the same now! On a different note had my 3 month check up yesterday and my platelets were down to 324 - the lowest for years! I'm a bit anaemic but you can't have everything. Take care. Karen x
Great news Karen, hope your platelets remain stable. Can't have been much fun carrying baby in that searing heat. . .
You take care not to melt ...it's really bad for us ,,this weather ..you are right .drink all day and all night ..bath and shower to keep your temperature down .keep out of the sun ..Iv got big black spots coming !! Cover up !! Love twinkly. Xxx💜
Goodness yes these temps are hardgoing with a MPN you definitely have to do short stints only in it and even more water than we usually drink !! I think humidity especially is hard to bear for us. My original consultant who was very experienced with MPNs said temp control tends not to work in patients with MPN so if you are cold you are COLD and it you get hot it just keeps getting hotter and hotter I know years before I was diagnosed I would always a hot flushed red face at concerts or parties anywhere it was hot I was at least glad I had a reason why in due course!!! And yes 1976 that was a summer heat I remember it well my last summer at school! Keep cool and hydrated everyone and roll on the cooler days 😜😉
Think I might look a bit eccentric when I go out covered up hat sunglasses factor 50 lol
If only my fat would melt !
Glad you feel well enough to go out though Chris xx
Haha Helen, you ladies want to learn to love your bods you all worry too much, , too fat , too thin, too tall, too short, big hips, no hips etc etc etc. . 😉😉😉 gotta dash due a book session. . , x
Auto correct !!! ' botox' session LOL
Lol, and there is me thinking you are about to become the next Stephen King, or maybe Jackie Collins 
I wish Paul, , not sure there's a best seller in me but never say never. . Good hear from you. . .C
Yep it's hot hot hot!!! Drank sooooo much water today I feel as if all my organs are swimming.
Good to see you have been out and about Chris all be it with your wheelchair tyres melting into the pavement nasty.
Great to hear from you though, hope you enjoy the Botox hehe !!!! 😜
Actually the steroids are a far cheaper alternative! ! 😲
Yep think they would be a hell of a lot cheaper,, the main thing is how are you doing ?
This heat cannot do you any favours, at this moment in time I am sat on the sofa legs in the air trying to eliminate my very swollen feet, although we have waited a long time for summer to come, and boy has it hit us full on, this is the first time in my life that I am not enjoying the sunshine and heat, was a real sun worshiper in my younger days, hey ho never mind must not complain could be tipping it down with rain ne t week.
Oh to be in England now that's summers here 🌞🌞
Yes I need to get my feet raised up due to fluid. .You paint a vivid picture of your legs in the air. . . I'm doing ok as it goes Thanks. . You gotta your blessings and take the positives, the main one is I'm much better than I was 2 mths ago so RESULT !! . , My improvement is incremental rather than revolutionary but as long as it goes in right direction I'm happy. . . Chris
Hi Chris,
Got to admit i do enjoy the warm weather, though has been a tad too warm must admit. When i was made redundant i was hoping for a few hot days before returned to work so i am not complaining too much.
Apart from the fact have put my back out going to the gym so i look like i have messed myself when i walk at the moment.
Do agree our bodies temperature regulator is a bit wonky and we do struggle sometimes.
Best tip i have to cool down is either hold wrists under a really cold tap, or put ice cubes on wrists...this is where the blood runs closest to the surface so easiest to cool down.
All the best
Paul
Empathy Paul as I hurt my back last week and it knocked me sideways, , still twinging and having to sleep best I can upright in a chair. . Hope you heal quickly. .
I just can't stand the heat anymore. It has been truly horrendous. Little sleep makes it worse. I've had a four day migraine and that hasn't happened for a long time. And I well hydrated, making sure I drink a litre every couple of hours.
My tip for keeping cool is to fill a 'hot water bottle' half way with cold water and freeze it. Like a giant ice-cube for the feet. It instantly brings the body temp down. I've been working with one on my foot rest all day and it's great - luckily I work from home, so I don't have to cart a frozen hot water bottle around with me.
Hi Karl1961 - Im loving the concept of a 'frozen' hot water bottle. . Got to be a market for that. . Great idea and easy way to cool oneself down. . When I had a couple high 40plus temps in hosp they used something similar to bring it down. . , Chris
Hi Chris good to know you're out and about take care my friend. I remember the summer of 76 as my eldest was just months old and we had to take such care. Work is hard in this heat stuck in a stuffy office xx
Thanks Caz, , yes offices can be terrible environments when heatwave hits. They're not usually the best in any circs. Good hear from you x
Hey, everyone - come and live in Scotland, it's cool up here. My partner actually removed his fleece yesterday but it's back on today! LOL! We had the central heating on two days ago! Actually I am dreading the heat as we are due to move to the south of Englad just as soon as we can find what we are looking for. I'll remember the frozen hot water bottle for then. I don't like being too warm I have to say.
Keep well all - and look after those melting wheels, Chris
Best wishes, Jan
Haha thanks Jan, , you will notice a temp difference when you move and probably won't need fleeces. . Don't worry abt wheels I've decided to avoid going out when too hot. . And at hosp quite a bit for treatment which takes best part of day when you factor travel in. . Cheers
Lovely to hear from you Chris, I assume you have "go faster" stripes on that chair! J.
Nah just had em tattooed on me arms 😎
Oh thought it was just me struggling with the heat, did some gardening this week had my partners 'Tilley hat' to protect my face from the sun. Wasn't long before the perspiration was rolling down my face, hair looked a though I had just stepped out of the shower . Boy was I hot..next day wiped out.
Can I just ask does our blood contain less oxygen, when we are aneimic . I feel as though none of my muscles have any energy in them. Also so, so tired...plus get breathless uphill and stairs. I have asked the question of my medic, but she just shrugs , would love to know if anyone else has the same issues.
Chris it's so lovely to have you back with us. Your posts are always interesting and humorous . Sorry to hear about you burning rubber , perhaps you should go just a little slower in your Jedi chariot.
Take care everyone.
Regards Sandy.
Thanks Sandy, , our blood issues certainly impact our energy levels and muscle usage. . Making things more tiring and leaving us fatigued quicker or for longer or both. I would say what you experience is the reality of life with MPN. . You just need to adjust in line with it like garden early or later in day or like mine sun is on back all day then front tea time / evening so I adjust to be out of sun. .
Yes I shall take it easy in the Jedi chariot. . , Chris
Thank you Chris. despite all your probs you still have time to drop a line to others . I do appreciate that. I do hope you are improving a little each day.
Regards Sandy.
Making up for lost time Sandy, people will be sick of my posts " oh not that Jedi again, , , wish he'd beggar off to the Dark Side" . . . 'Been at hosp today and back tomorrow for my UV Light treatment so improving by degrees. . , cheers Chris
That's great you are improving. I live in Scotland like Beetle but it has actually been hot here too. I hate the heat!! Best wishes, no skinny dipping, Aime xx😺😺
I bring a whole new meaning to skinny dipping the way I look in me birthday suit. . . 😲 x
Hee hee, I am sure you would be fine!! XxAime 😺😺
Milk is better than water or sports drinks for keeping well hydrared.
I took a cold hot water bottle to bed with me last night, that and a damp flannel on my heated brow.
A cool shower at bedtime helps, and reading a book until I am sleepy keeps me still and quiet, therefore not tossing around and getting even hotter.
Very sound advice Borage, , I think if you achieve a calm before sleep esp on hot nights it helps. . .
Pleased you are getting out and about. To quote Peter Kaye I like it warm but not this warm! My dogs hate it, I've told them to take their fur coats off!
The last few days it's taken me all day to do nothing - it's lovely being retired. Don't know how I fitted time in for work!
Best Wishes
Lizzie
Aye our little Staffy has been mooching round for a cool spot. .carry on getting the most from your retirement. . . C
I hear the phrase a lot " lets burn rubber" hubby uses it often, but in your case Chris its got a whole new meaning. lol. I too got a tad exited when you mentioned the book session. I thought dark horse, here he is keeping himself busy by writing a book. Thought I would have a cheeky trip to Blackpool for the signing. I have a cold water bottle in bed constantly, have had for years, but in this heat I have been putting it in the fridge, Another tip is fill a plastic bottle with water and salt, freeze it and stick in front of a fan. Sounds nuts, but it works.
On a different note, I started Hydoxy last week and up to now I have not had the ice cold feet ( nothing to do with the cold bottle ) This was so ice cold that it hurt, same with the burning, very painful. Happy days.
Keep doing those laps of the street in your chariot of fire. Keep well.
Hugs
Anne X
Thanks Anne. , more good advice , not heard of the water salt fan combo. . Hope you're ok with starting Hydrox I'm sure you'll settle down with it. Sorry bout the book but as I said to Paul never say never coz I used to make up stories for my son when he was young and I oft thought of penning them. , Chris x
Love reading all the posts as I am a newbie. Does everyone live in the U.K.? I loved Scotland for 8 years in the 60's.
Also, I cannot understand all the acronyms used. Is there a chart listing them? My problem is high blood platelet count - sounds as if it is a common complaint from all the posts.
Just started year 92 - Lung CA survivor for 34 years- still driving, writing, painting and complaining. Here's one ....B & M = bitching & moaning
Fair play to you Noventa, , , you truly are one of lifes survivors !! Most folk are UK based but w have many other countries represented, ie Canada, Australia , New Zealand , France to name few main ones. ., Agree many abbreviations used , don't think there is a glossary but if there any that you wish to know please ask.
Chris
Chris I've so enjoyed reading all your posts. No one will ever tire of you you're so uplifting! Can you tell me if my problem with heat is my Hydroxy or ET? Thanks and start that book. You have a gift with words and it will be something your kid(s?) will cherish when you're gone. Katie
Thanks for your kind words Katie , , I will consider the writing but the children's book market is flooded now whereas 25 yrs back it was ripe for expansion, so might have missed the boat. Agreed it wold leave a legacy but im not planning to depart this moral coil anytime soon. LOL.
I'm afraid I don't know the answer to your question re your heat, , if pinned down I would go effect of condition rather than the Hydrox but that's only because I was taking it 8/9 years and tolerated it well. Maybe one of our friends with ET could advise.
Have a good day, hope you're doing something nice, weather very dull, drizzly in Blackpool. Chris
Oh Chris, this weather makes me put more ice in my gin....Dilution!!!!!!!! Hope alls well.
Sounds like a good idea to me Nod but you'll have to drink one or two for me til I'm well enough to enjoy a tipple. . Cheers
No probs there Chris. crack on with getting well enough. 
Nod
Hi Chris , nice to hear from you, i agree i dont like the heat at all ,especially when its soo humid out ! Hope your getting stronger day by day and not unwell. At least you went out at last eh , Take care or yourself best wishes Holly xx
Thanks Holly, , fortunately the real hot weather doesn't stay around too long, never thought Id say that !!, or be moaning about it. . Whilst I know how cold it can get in Scotland I've also had some scorching weather and as a young chap got badly sunburnt when in Dumfries and Galloway. .Before transplant we often stayed with my sis in law in the Borders where it can be rather damp as its in a valley. But like Blackpool when it's hot it can bake you in minutes.
I've been pushing myself to make an effort and get out and about coz I spend too long festering in my chair. . . Cheers for the noo xx
hi jedireject i too am very sensitive to heat and sun. it can be a balmy 75 degrees and if i am in the sun i get very hot and sweaty and dizzy within five minutes or less. so take care and stay out of the heat if you can. i order a lot of things from the internet and only go out early or late to avoid the sun. take care
Thanks for your reply pvnow3 . With my skin being so thin now because of steroid use I'm advised to either avoid or cover up and apply factor 50. . Probably get vitamin d deficiency because not getting my sunshine , might have to consider supplement.
Take care yourself and watch out for those UV rays. . Cheers Chris
Anyone manage platelet levels with something other than strong meds?
MPN event Gloucester and S Wales 21 July
Better Late Than Never-Letter Received Today
Thoughts please. Aimed at the many with a better brain than me !
Still in hospital, now worse than before visiting A&E
