MPN Voice
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HEATWAVE ET

I was wondering how you lovely people were feeling in this heatwave,

Whilst having ET. MY platets are down but the heat knocks me out, I

Always wear a sunhat. I 'm not coping in the heat, love to hear

Your comments.

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I am not coping either,P V 8 yrs,Hydrea other Meds,this is my worst hot summer ever in regard to coping.I am used to hot summers ,live in S W Fr. So lucky to live in an old house with shaded verandah and terraces,lovely swimming pool....but I am almost unable to even do a short walk this year.Perhaps 'cos I am older,or maybe as I am on high dose of H U....so I empathise with you Bulbs......ice packs help ,I take them to bed helps to sleep, as we don't cool down at night either ,have a Dyson air cooler ,purifier It's a life saver.....wear clothes light and loose,have learned a lot how to manage,but like you at the mo ,struggling.Best to you,by the way I find even the best of sun hats make my head sweat,a cotton scarf works for me.Good Luck,Sally

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Hi Inca what dose are you on? I’m 17x500mg of H a week and still not stable! Wondering how much more my body can take without impact negatively on other things.

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I am also on 17x500 every week ,same as you.Also have a stent ,so heart Meds too......Really noticing the heat and very fatigued.Can push myself to go out in the evening to friends for apero,which here means lots of delicious French eats ,loads of liquids too,Water for me of course....then I am wiped out for two days at least.My H C T stays high,all other counts ok,except for Plaquetaire which is very low.Like you ,I do get concerned about the poor body and mind,but I am tested every month after blood tests, hoping that yesterday's will be lower H C T and Hydrea reduced.How long for you ,the Hydrea? Me 8 yrs PV,treated in Fr.where I live. Best to you,Sally

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Hi Inca I’ve been on H 2 and 1/2 yrs. I have ET which might make a difference. I’m 62. I have heamoglobin if 10.4 which I find debilitating. I also think as time goes by my symptoms are getting worse.

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Yes,mine too,I expect it's normal....I am way older than you,having been fit and active all my life find the slowing up very frustrating.However the H U keeps us alive!!!Got to be thankful for that. Sally

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Every sympathy. I’m not coping very well either. Thank god im lucky enough not to be working! Drinking gallons of water, eating ice cream and fruit, fans on everywhere! But once it gets a little bit cooler I’ll go and sit in shade just before bed.

Take care, kind regards Aime xx😺😺

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Loose clothing in natural fibres - hats or headscarves if out in the sun - move slowly - keep drinking still water all day - I also sometimes take preemptive paracetamol if I feel my temperature start to rise - a good tip I was given was to cool your car down before travelling with open windows, or put the aircon on full blast if there’s no breeze - and water spray is great for instant relief 💦

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It’s difficult, do not go out much, in the house with fans on and blinds drawn, also can only sleep if I have the fan on in my bedroom, worth it’s weight in gold!!

My platelets very high so I don’t think that helps.

Stay cool. Regards Sandy x

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I don’t have a duvet at night, I use just the cover.

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I struggle a great deal in anything above 9 Celsius so I am really miserable..I have never been so grateful for the fan!! I walk the dog at 4.00 am before it warms up too much. I took advice from someone here about a wet tea towel around my neck and that has been great! Those of you who live in hot climates are amazing I admire that you cope at all!!! I don't wish bad weather for the sun-starved but I do wish the humidity would drop...

Here's to hoping it cools a little especially for you Sally it sounds awful for you.

Susieq

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I found out by accident a wet towel over the feet is really nice

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We are very cold in NZ bring on the summer!! Cold isn't fun eithet

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I’m in Kent don’t like this heat, don’t get me wrong I love the sun but the heat is what affect me, Struggling with burning hand and feet just can’t control my body temperature. My new best friends is my fans I have 3 set on me....lol

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Don’t know if you all are familiar with the phrase, “misery loves company,” but I’m so glad I’m not alone in not feeling well in heat. We have 2 products in the US which are really helpful & I hope you can locate them. One is a small handheld battery operated fan attached to a small water chamber. I put ice & water in the chamber and spray my face & neck at the same time I run the fan. The spray comes out like a heavy mist. If you can’t find this product you could just use a spray bottle with ice water. I even carry mine in my car in a cooler with ice packs to keep it cold. The second item is a towel made from a special material that you get wet and then snap it tight between your hands. You then wrap it around your neck or head and it’s 10-15 (maybe more) degrees cooler than the air temperature. When the coolness is gone you just snap it again. I know the towels are in the UK because someone from the UK posted here about using one. I also recommend taking cool showers and even running cold water over the inside of my elbows & wrists seems to help me. We all need to take extra care not to get heatstroke. Hang in there. Sending you lots of compassion from here. Katie

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I'm from the US as well. I was curious if you were able to file a critical illness claim

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I think in the States in would be Social Security Disability (if you have a long enough work history) or Supplemental Security Income (if your work history isn’t long enough). But I’ve never heard of a “critical illness claim” here. Katie

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There is a product in the UK which cools you it's a cool spray

Love this.

I use a muslin cloth from Aldi in their baby range I put them in the freezer.

I sleep on a bath sheet at night as this works for me.

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I really don’t want to moan too much. Blue skies and long days are infinitely preferable to grey skies and winter gloominess. But I’m struggling with the heat - and more particularly the sunshine.

I’m on Hydroxy (have PV) which has been a wonderdrug and sent my counts tumbling but I have also been read the riot act about covering up etc. This is my first Summer facing up to these new realities and it does feel like I’ve been thrown in the deep end!

Been a bit of an experiment on the cover up, sunscreen, sunhat front. Let’s just say it’s a work in progress! The reality is, covering up (at least with anything that will actually block out the sun) makes you even more hot. Sunscreen is sticky and generally vile. (And I’m not convinced the Roche Posay facial stuff which is OK is very effective.) And sunhats make you sweaty and squish your hair into a complete ‘Old Batty’ vibe (along with long flowy clothes). I managed to survive school prizegiving yesterday including three hours in a marquee in the middle of a sun drenched field. Only consolation was a lot of people looked more sweaty and uncomfortable than me!!!!

I’m fine if I stay fairly close to home / in my air con car. Out and about is a bit of a strain! And the idea of a ‘Summer holiday’ is eliciting mixed feelings. Will keep you posted on my new ‘I’m on Hydroxy’ summer wardrobe purchases! (Clearly my shopping habits are currently driven by medical need - or so I tell my credit card. 🤣🤣)

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I got heat stroke from excess heat caused by covering up my whole body plus a hat to prevent sun exposure being on HU. I found an spf 50 umbrella to carry now if I have to be in the sun. Hang in there. Katie

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I try not to go out in this heat, I open all my windows and doors to create a through draft,have fans in every room. Pull the blinds down where ever there is direct sunshine coming in. Use a damp flannel on my face & neck and a wide cotton sweat band to mop up the river of sweat coming from my head. Drink loads of water and eat mainly salad & fruit. After the smallest of excerion I feel so tired and drained, I'm actually falling asleep during the day. I can't wait for it to rain and the temperature to drop down to around 20c

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Are you getting enough protein daily in your meals? Katie

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I'm going through the same as you- first Hydroxy summer(ET). Finding it hard having to cover up when it's so hot and I also had a hot speech day in a marquee last week!

Love this weather though, not complaining. Just need to find some cool cover up clothing as have always just worn strapped tops and sundresses in the past, sigh.

Difficult to maintain my large sunny garden.

All a learning curve.

My husband has bought me a pink sunroof parasol, bless him!

Good luck!

Suzy

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There is a variety of scarves available in UK which are designed to keep you cool. I also use a gel cooling pillow at night. Running fans all the time is costly so I try and use alternative methods whenever possible. Keep curtains closed on sunny side of the house, open widows to create a through draft etc

My partner has just said he will never complain about cold weather again! I’m sure he won’t stick to that when winter inevitably come around!

Best wishes to all

Jan

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I'm on Anagrelide, but I'm still struggling in the heat.Us Northerners are definitely not used to it! I wear loose tops and trousers, can't sleep without a cover but just using a loose cotton sheet. We've got an air con unit going constantly - goodness knows what the electric bill will be!!

Keeping our dogs cool is difficult - especially as one of them keeps going outside and laying on her back in the full sun!

I've no doubt when it rains again that we'll all be moaning!

Lizzie

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I'm just sweating profusely and not sleeping as a result. I spend my nights wringing wet and when I ask my husband if he's anything like as hot he just tells me it's me. So it must be the Pegasys. Still better than Hydroxy!

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I am spending a lot of my time indoors, blinds drawn, feet up with my book and my tower fan giving me a breath of moving air. Unusual for Scotland. I'm sure I shall be complaining about our rotten weather up here again very soon.

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I’m absolutely loving it. It’s so hot that sitting in the shade is a pleasant temperature ( ET)

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