MPN Voice

This hot weather... affects us ?

Hi my friends , woke up in a hot sweat last night. had yet another bout of tum upset, seems to happen every few weeks or so ! im very. careful when our weather is hot , re preparing food etc , so inm thinking are certain foods upsetting me !! or is it Mpn. HU or clopidrel.! i see heam on 14th again i will be armed with alot of questions , not that i always get answers too ! especially if all bloods test come back fine ... hope your all. managing to keep well hydrated of late and finding ways to keep cool and comfortable best wishes Holly

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Holly,it is everything we take!! I think also the heat really does affect us.I struggle at the moment,we are seldom below 30 odd and sometimes I feel I am going to just fade away.The water spray cans are a help,gone thru dozens for dogs as well....My Dr assures me the upset tums are the medication,let's be honest it's poison isn't it.Have you an electric fan? helps a bit but really with our continual heat it just blows hot air around !We have an hour early morn to open shutters and Windows then it's close up and melt fans in every room.....try to keep cool,I sympathise with you ,send my best to you,longing for a cool English breeze....no chance yet to get back....cool showers if you don't itch too much.....just stick it out best we can,cool karma ,xxSally

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Hi Sally,

I would just like to say how sorry I am to hear about your recent fall and subsequent broken femur. How quick these things can happen!

You certainly have been through a rough time of late - but you always manage to sound positive. The way you describe the weather in the South West of France sounds like pure torture. I wish you well in recovery.

Mary x

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Thankyou Mary, I try to do things I did in my youth!!!!The weather for us here is not normal,everyone is suffering.....we do get glorious summers,but only a few 'canicule' weeks ,this has been since early spring,then strong stormy winds a little rain.Odd all over the world tho isn't it?. Just had last metal segs out.....bit shaky now,you take care Mary,in the heat it is so easy to be faint and fall as I did........should have let my hubby take over that morning.Any way ,a hard lesson learned, keep well,think U K is in for a cool spell....xxSally

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Hi Sally , bless you , for your reply , yes your right ,it seems with me im getting more sensitive to the meds the longer im on it ! in early days was a breeze ( excuse the pun ) i also just read Marys post , im so sorry to hear you have been through so much i hope all is starting to heal for you ! re the itching .. this is one side affect i dont have 😄but yes have lots of showers yes i use electic fans and i draw all curtains im putting up a fly screen curtain on back door in kitchen the flies love to visit me !! especially on days i cook roast , im very concerned with food and wrapping it up or putting in fridge wisgh i could fit in fridge at times haha you take care my friend in your lovely part of the world Hollyx

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Sorry to hear this Holly.

It's a problem trying to detect the cause when there are so many elements to consider. Can't afford to underestimate the effects of medication on our tums too, we have to be vigilant. I do hope the haematologist can answer your questions.

Mary x

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Hi Mary i have mentioned it before to him , but dont seem to get any answers your aware they all seem to say ..well your bloods are all fine!! yea but im not ... grr i also will ask what is blood infection caused by ? you take care Mary Holly x

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Hi Holly, Hot weather...I find I don't want to eat much in this hot weather but have to due to the type of meds we all have to take to protect our stomach especially at night so I have found to my peril I have to beware of eggs, stomach upset and horrendously painful also rice now upsets me, is that weird or not? wishing you good health June.

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Hi Holly, know how you feel, I have started to get upset stomachs, and when I went to see my GP about it they tell me it is IBS at my age!!!! I do suffer with diverticulitis which crops up occasionally but this is so unexplained, have mentioned to my haematologist and they have said that it could be the Hydroxy but my blood counts are all good. Like you in this heat I make sure that food is properly cooked even if we Bar b que which sometimes can spoil three flavour, but rather be safe than sorry.

A few years ago now we invested in a fantasia ceiling fan and boy was this a good investment especially in this hot weather. I normally love the sun but of late find it and the heat a bit trying.

Keep the water up, oh and the occasional wine started putting ice in makes a nice cold drink with the evening meal.

Jean x

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Hi Jean , thank you for reply , yea im prone to ibs most of my life but i think taking HU makes it more often im sure , ibs is in my family so... I cant seem to drink red wine like i used to im now into a sweet rose , or half beer , dont tolerate alot of spice in foods now either . But yes why do all heams go by blood results surely it can be meds or even the mpn itself , its a mind field at times dont you think ! yes i like idea of ceiling fan , cant see my ol man getting one though ! in meantime im useing tower fan and desk fan.you keep well Jean Holly x

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Hi Ladies - I also suffer from tummy upsets but take Imodeum which sorts the problem out. I generally know when my tummy makes very odd noises I know the pains will start and then the upset. I don't need to take them so often now but they are a lifesaver sometimes. I take 35mg of roux a day so it's no wonder my body protests!!!!! The heat is no problem it just hasn't arrived in Ireland yet but I do sympathize it's very difficult to cope with.

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Rux not roux!!!!!!!

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Hi thank you for reply , thats what im like how you described it , noises ,pain my last bad one was mid march ! i do keep imodeum but wont take unless its more than 3 or 4 days , in case its a bug and it is better out haha if you know what i mean have you spoken to heam or gp about it ? best wishes Holly

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Hi. Do you have any of the many brands of cooling towels? You wet it, snap it and it gets very cool. You wear it around your neck. They work very well. They aren't wet enough to drip and last an hour or more. Then just re-wet, snap and it's cool again. Amazon sells them but I don't know if you get Amazon in France & U.K. They also make baseball caps to cool but I've never tried those so I can't say if they work. Also put ice in your spray bottles so it's really cold water you're spritzing with. They make small fan/spray bottles through Amazon as well. Good Luck. Hope relief comes soon. Katie

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Hi Katie i have on order the cooling towel from ebay , they ran out of stock!! no surprises there ... grateful for all your tips katie take care Holly

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