Hello everyone. I wonder how everyone is coping with the heat. Without the advantage of an air conditioned office I find it hard to cope with the heat and no relief at night either..
Anyone have any top tips?
Is this something that affects you too?
Feels like super fatigue to me, or maybe it's wishful thinking fir a holiday!!
I am working from home still so have enjoyed it, shorts on and doors open, far less stuffy than the office.
Nighttime can be uncomfortable but i have the window open in the bedroom and on the landing with the door open so it creates a through draft. Sleep on top of the covers.
You can get those special pillows which are supposed to be really good for cooling you down. I havent tried them though
Weirdly I have so far coped better than in last year's heat wave. Last June when it was really hot I had as yet undiagnosed MF. Perhaps the fact that I am now being treated has helped. Also, throughout the colder months, I had quite severe knee pain which has improved hugely in the warm weather. After a discussion with Prof Harrison, it doesn't seem to be bone pain though. Either way, being in less pain probably helps me cope better with the heat.
Waiting to put up up acoustic panels in bedroom, which always gets most heat, I have been in house for 18 years, house 'roughly ' redecorated when I moved in, first noticed my Mancave, terrible stench of nicotine, coming from underneath wallpaper, actually in walls themselves, now noticed main bedroom, same sickly stench, all this time would that affect my health? Okay used to be a smoker myself, thirty years ago, only smoked about 8 years!Coming out of isolation now, and my 65th birthday today, feel like a caterpillar coming out!
Feeling knackered almost all the time, just general health not good anyway, but you are right Mrs_Average I could do with a long holiday myself!
It's a horror isn't it Mrs_Average . I work from home and find it really difficult in the heat.
The only tips I can give involves ice (lots of it) and a fan.
I've got two 'hot water bottles' which I fill and freeze - I keep them going on a rotation and put them under my feet, wrapped in a pillow case, so I don't get frost bite. Cold feet cool the whole body down. I also put one near my feet when I sleep and that works to get me off to sleep.
I also use a fan and place an ice pack in front of it, the fanned air is then cooler.
I use a cooling pillow (you don't have to freeze them) It works, and I've no idea why! I started using it during the menopause and can't sleep without it now. The only other thing I do is to keep a two litre jug of water in my fridge and I make sure I drink it all throughout the day - I make sure I'm well hydrated.
I know it sounds terrible to say, but I really can't wait for the cooler weather to be here. Kari
😎☀️
Great tips! I have a good fan, going to try your cold ‘hot water bottle’, sounds great!!
Nothing like a silent [it has to be silent] large fan circulating cool air around the room, just taken it out of 'cold storage' checked the electrical fittings, cool man, really cool!😗👍👍🤗
I love the idea of hot sunny weather (especially today when it’s gone all grey and rainy). But the reality is, it knocks me out. And being on hydroxy, the sun is not my friend. I’ve achieved very little in the past week despite the long, bright days. I venture into the garden first thing but otherwise stay put inside.
I find keeping the sun out of the house by putting the blinds down and curtains drawn before the sun hits (or not opening them in the morning until it’s gone, however tempting) really helpful. Also a tepid shower before bed and sleeping with just the duvet cover - with a light fleece blanket on the side helps (OK I admit I still take a hot water bottle out of habit - but sometimes I wake up feeling cold :))) ) Keep cool!
I’m the same, and do the same as you, staying in mostly- go into garden in the morning before the sun hits it. Keeping my curtains drawn so the sun doesn’t come in.Have a fan beside my bed, a good quiet one, sleep under a cotton sheet and have a natural fibre blanket next to me as I too often wake chilly in the night.
Going to try the cold ‘hot water bottle’, sounds great… x
Hi there, I have ET and am on hydroxycarbonide. The slightest bit of heat and humidity practically imobilise me! I have recently come back from a totally relaxing week on the Norfolk broads, which is close to the sea for those who don't know and as soon as I get out of the car at home which is inland I have trouble breathing and it feels like a a lead suit has been put on me. It stays like this all summer until it is quite cold/ zero humidity. If only I could live ten miles from the sea it would help so much!Top tips🤷♀️ don't move too fast, when outside stay in the shadows and always where a sun hat. Try and create a through draft in the house even at night and ofcourse drink plenty of water.
I am sorry but if you are anything like me there is no solution only planning and pacing oneself.
I am typing this with all the windows open while it is pouring with rain, my skin is cool to touch, But still sticky, I do feel marginally better but I am not moving. I still feel heavy and SO tierd I would like to shut my eyes , but hey ho! I have to go to the shops now . Hopefully air conditioning 😁
To add insult to injury, none of our 'specialists ' except it is anything to do with ET or drugs 🙂 keep cool and keep smiling and choose the shady side of the garden 🤗
I have a fan right next to me at night. A tepid shower before bed helps too. Other than that sit in the shade with a book and chill.
Well over here in Australia, we have rainy and cold days, we're into our winter. By the way, sounds like most of you're in the UK, what's the temperature there now that most of you feel so hot.
I think you will laugh at us when we tell you! Okay here goes: I find it stiflingly hot at about 25 degrees. Feel free to roar with laughter! 😁
It does get very humid here in the uk thought. I’ve always found I can cope with higher temperatures better abroad, where the heat is dry rather than humid. Next holiday abroad, if it ever happens…somewhere cooler, in the mountains lol. Sunshine holidays were for pre MPN days I fear x
25 degrees is just beautiful weather for us lol...
Hi Lifam I've been told by ex-pat family and friends that the UK and Australian temperatures and heat aren't really comparable - we, in the UK get our hot weather from a jet stream originated in North Africa, by the time it gets to us, it's dry, and uncomfortable. We get really hot, hard to breathe air! Plus our homes and buildings aren't designed for hot weather - In the UK they've been built to keep us warm with insulation for the cooler months. Which is great for the majority of the year... not so great during our Summer temperatures. So 22c in the UK feels a lot hotter than 22c in Australia... you would have to compare our 22c with your 35c as a comparison.
I totally understand because I have 2 brothers living in UK, they can't take the heat either. In Australia, summer can be warm and humid in summer, yet In south Australia where I live, we do have hot and dry weather especially from the north (desert weather), in summer our heatwave can range between 37-43 degrees. Yes, you are right that we have different types of heat.
25 degrees with high humidity can be miserable. We have been having 32 - 38 degrees in Los Angeles, California. But it is a dry heat, and I think it easier to keep cooler when it is dry.
Unfortunately, most techniques I know work rely on evaporation to be really effective.
None the less, here are some things that I have found useful.
Stay hydrated.
A damp cloth on the neck or over the head. Don't make it too cold, you could trigger a headache. Replace as it warms up.
Cool wraps on your wrists, or anywhere the blood flows close to the skin, again, replacing as it warms.
Like Kari1961 says, ice at the feet. If you can take your shoes off, direct a fan to blow across your feet.
We have overhead fans in almost every room (we just got airconditioning a few years ago) and they help a lot. If you don't have overheads, I take a fan and point it at the ceiling, it recirculates the air better and sometimes the fan blowing directly on you is uncomfortable, bouncing it off the ceiling gives the sensation of a nice gentle breeze.
Minimal clothing in a humid climate is best and just wiping yourself down with a cool damp cloth to remove the salts from the sweat.
Give yourself time to be languid. Prior to airconditioning, citizens of our southern states and the tropical regions didn't move slowly because of laziness, it was to avoid heat prostration.
I have ET and am on Hydrea. I dread the Summer. When it goes above 24C or is humid I feel really weak and drained. I was told to drink lots of water, and I do try to do that. I have a huge Tower Fan by my bed - I have it on all night long when it's hot and sticky, and find it really helps. I sleep on top of my bed with light blanket. I have a litre bottle of water by my bedside, as I wake up with a dry mouth throughout the night. Trouble is, the more you drink, the more you need the loo!! Lol. Hope we have a nice Autumn this year, it would be nice to enjoy sitting out, with the sun less fierce and a nice gentle breeze!!
My sympathies, it’s killer. I am dreading next summer…now we are finally in to winter down under it’s been bliss for my symptoms. Have you looked into a ‘cooling vest’?
Thank you so much for the replies and ideas. I particularly like the cold hot water bottles for your feet abd the tipping the fan towards the ceiling. Ultimately I find I do have to go slower, do a bit less and accept that I can only operate to about 70 % in the heat.. I went out the other day and got caught in a huge rainstorm, I found myself laughing out loud in the rain 😂. Big hugs to you all !
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