Auntie Bleary-eyeds , Bleary words of wisdom, for... - PMRGCAuk

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Auntie Bleary-eyeds , Bleary words of wisdom, for coping with the heat on holiday and summer sun with PMR , Fibro and any Chronic Illness.

Blearyeyed profile image
Blearyeyed
โ€ข40 Replies

Well , folks how was your day?

Do you feel as limp as the lettuce in a British Rail Salad?

Are you struggling day and night with the added burden of Heat Intolerance that comes with Chronic Illness , Flagging Adrenals and Steroid usage.

If not , you are lucky , and should probably consider a stake on the National Lottery this weekend , as most , if not all people with Chronic illness , suffer the hot , sweaty horrors of Heat Sensitivity during their struggle with their conditions.

I have suffered with both forms of temperature sensitivity over my years with various chronic conditions , and , although I have often mentioned some of my hard earned tips in advice on particular posts on the forum , I thought this current European heatwave , and the up and coming Holiday Season might be a good time to impart my , " wisdom", yes wisdom , on how to help cope with the heat.

( stop laughing at the back of the class Yellow Bluebell , Scats, and Goddess Freja I can hear you from here , despite the tinnitus , I can occasionally be wise ๐Ÿ˜)

So here goes , and , with any luck, you can spend the weekend looking slightly less like a damp dish cloth flopped , face bent down , over the back of the nearest garden chair .

Or , at least you may be able to enjoy those balmy Summer days and trips abroad without needing resuscitation and an Ambulance . Those photos never look that good in your photo album.

Oh , and if anyone has Angela Merkels' email you might want to send it on , the poor dear definitely needs a bit of help in the heat just now . Ditch the heavy polyester suits for starters sweetie , or it will all end in tears! Anyway.... The List , like the road it's long, but not hard and keep a fan for the turns!!

1. Drink more fluids . The most important rule of all.

Water , preferably mineral and not tap , replenish the salts in your body and hydrate instead of flushing the salts you need for good kidney function on those trips to the loo.

Green tea , any flavour , either iced and kept in a bottle in the fridge , or, believe it or not , warm when you are feeling very hot to aid perspiration.

If you are in a really hot country a homemade isotonic drink first thing in the morning can help reduce the impact of dehydration on your system bringing on the shakes and other issues from loss of salts. Take care if you have high BP or kidney issues though.

We all suffer with dehydration because of the extra work that bodies do internally to process drugs and reduce inflammation , in hot weather these jobs are even harder to do , we can need 50% more fluids per day in the heat because of sweating and water loss . So , drink , drink , drink.

Take a bottle of water out with you everywhere ( cool it in the fridge or put ice in it before you go out so it's not warm and manky!) . Top it up as you go at shops or cafes. Drink while you are on the go , it reduces the Fatigue in hot weather as much as taking regular rests.

Don't be fooled to think just because you aren't moving you can stop drinking . If you sit for a long time , or are on a long train or plane trip , sip water constantly so you don't get headaches and can cope with the activity when you do get up.

If you sit for along time , before you get out of bed or just before you exercise , drink alot before you get up to prevent dizziness .

If you are fed up of drinking , especially if you have done alot of activity/exercise and have Diabetes related issues , get one of those homemade ice lolly kits , or use an ice cube tray and make mini juice lollies , they are refreshing and prevent the Fatigue of going in a Sugar Dip without causing a massive peak.

Drink , Drink , Drink!!

2. Pace Yourself!!!

You need twice the energy with Chronic Health issues in hot weather to do anything than you usually do .

Don't be fooled by the Feelgood Factor of Summer Sun.

Just because the sun makes you feel a mental energy boost it doesn't give you more physical energy , that reduces in the heat .

Tell you brain you will not be tricked by its subtle plan to make you bounce about for an hour like a moron then force you to spend the next day lying on the sofa , half dressed like a panting wreck.

Train yourself to give yourself more time to do each activity than usual. Plan more rests into your day or trips than you normally do on an average day.

Do not try and fit in lots more activities just because the sun has got its hat on. You might want to, but you really can't create the itinerary of a World Leader with Chronic Health issues , not unless you want to become the next statistic on the Evening News!

Plan your day even more carefully than normal . Make sure that things that take the most physical activity are done in the morning or after 4 pm.

Be like a Spaniard , take a Siesta! even if you don't sleep , have a relaxing lay down in a cool , comfy place .

For the love of all that is PMR , do not be like Mad dogs and Englishmen and go out in the Midday Sun. Between 11.30 - 2.30 , keep off the sun loungers or the beach , even in the shade or in the sea. It's a definite two day pain trigger if you try to act like a British Loon on Holiday .

Plan restful activity days between physical days on holiday. Be ready to give up your plan for the day if it's too hot and just enjoy the view from a cool shady spot. And horror of all horrors , accept that although it looks lovely , especially if you are already under the weather you may need to spend the day inside!!!! Argh!!!!

Never fall asleep out in the sun , even in the shade , it's the water thing again.

If you want to exercise, choose sports that in themselves are done in cooling environments , like swimming ( hot weather is probably the one time you want the pool to feel cool) , walks in the woods , or Tai Chi in a shaded park. And don't try to do as much exercise as you normally would.

3. Hydrate on the outside too!

Cooling the skin , and removing the excess salts from sweating are important to combat Fatigue and stop infections and broken skin.

Get some empty spritz bottles , fill with water ( I use sparkling mineral water ) cool them in the fridge. Use to spray your neck ( best place to cool your body overall not the head!) , feet , hands and painful joints during the day , especially when you are on the beach or walking alot.

Keep it in your bag with a little flannel or cloth to dab off the excess during the day. Have one by your bed at night.

Have cool but not cold showers if you sweat alot or feel you are overheating. Use ice packs in a cloth and dab over your body if you are suffering.

Wear cool , loose, light clothes and use cool bedding from natural fibres , but keep a jacket , cardigan or socks with you as sometimes as evening hits you can be quickly affected by the temperature change.

Moisturise , especially in between toes and areas that rub , then let it dry to stop skin chaffing .

Use a good sun lotion and put it on regularly through the day , especially remember your ears and just under any straps or ends of clothing . Use lip balm and a hat. Those areas burn more easily , the worst thing after dehydration for heat intolerance is heat stroke and sun burn.

4. Emergency bag

Not strictly a bag but things to have with you which are in your handbag , or carried by your favourite essential , your version of the Hairy Henchman!

Have a bag containing medications you need in the day , your spritz , a light scarf ( lots of uses) , a hand fan, bug spray and antihistamine cream , whichever antihistamine you use , vaseline mini tin , waterproof plasters, some antiseptic wipes. Covers all eventualities.

If you get bites or chaff your skin the vaseline can be spread on , left to dry and you can continue , it stops dirt getting in cuts or bites and is semi waterproof so good on these things if you go swimming too.

A foldable chair and towel ( hence the henchman ) take these out to use anywhere Sitting on the sand , a wall , or the grass is beyond you , it causes more discomfort and that makes you overheat more.

An Emergency Oasis List!! with items from a quick internet search of the best places to stop into in the heat for a cuppa or an ice cream. A gallery or cool museum . Try Trip Advisor before your go anywhere .

It can turn a necessary rest into a shared memory for everyone. Look up stuff in your own area too , one silver lining I found of having a Chronic illness was I discovered places close to home that I never knew existed that I can relax in even on days when it doesn't feel as hot outside as the farts of a demon hoarde on curry night!

Finally , Sleep , Eat , Repeat!

When you can , anytime you need to just have a drink before you drop off to stop a headache.

Wear cool clothes , use sheets so you feel cosy but not too hot .

Have your room well ventilated but without a draught on you . Don't use noisy fans that make you feel like you are sleeping in the hanger at Gatwick . These may cool your room but cause poor quality sleep and you wake up headachy next day.

Oddly , getting out of bed and having a little potter in your room for five minutes cools you down more than hours of blown air.

Half an hour before bed have a cool shower or spritz with your bottle then rub peppermint lotion or something like biofreeze or Dermacool into your feet , wrists and shoulders .

Use behind the neck , ears and on your temples if you are overheating , Vicks can also work , and these are also good to reduce pins and needles of nerve pain and heat induced migraines .

Do not give up drinking in the evening and have something to drink as you settle in bed , it helps reduce the stinging in your feet and fingers . Just face it going to the loo more is part of the course with PMR , Joint and Chronic Pain and the upside is a fully functioning bladder reduces those UTI s!!

Eat light small meals , even if you go out on the town , eat a big treat you will wish you hadn't later ! Have lots of variety in fruit and vegetables , eat more seafood as the mineral content is helpful in hot weather.

Don't forget your vitamin / mineral supplement , you need it in the heat as much as when you have an infection.

Cook food early in the day before the weather heats up to eat chilled, or quickly warm up , later in the day , as being in a stuffy kitchen is a terrible form of torture that should only be reserved for Bad Doctors and Politicians !

Actually , if you can shed the responsibility of preparing all meals in hot weather to the young , the healthy and the foolish . Even if the kitchen is your usual domain , in hot weather it shouldn't be , teach them to fend for themselves , even if that means catering involves a trip to the ice cream van.

Find , and remember all the tips you can that work for you then repeat everytime the sun tries to fry the Earth , and you, extra crispy , then you feel more sunny side up when the temperature soars.

So , this ended up being more like a book than a post , but at least in the future if you see anyone ask this question you can send them to this post and they can hopefully find hot weather hope too.

Most importantly though...

Enjoy the weather , don't dread it !

And , as with anytime or season of the year with Chronic Illness , PMR , Fibro or any other health issue , " Go with the Flow ! ".

No plan is worth getting all hot and bothered about , especially when you are already hot and bothered.

Keep safe and Be cool PMR Posse , Chilling ..... Bee aka Bleary eyed xxx

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Blearyeyed profile image
Blearyeyed
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scats profile image
scats

Looks like very good advice there from Doc Venom.

Speaking as one who sits at the back and giggles, you will appreaciate that I wii need to read this in installments as the old brain bud isn't what it was!

You really must try sleeping at night Bee, these late night rants aren't good for you, or is this another way to avoid the heat?

Blearyeyed profile image
Blearyeyedโ€ข in reply toscats

At the moment my throbbing ankle is doing something that even a tip list won't solve , but at least I'm not overheating while it does it!

scats profile image
scatsโ€ข in reply toBlearyeyed

Ooh! I had hoped it wasn't too painful. Enforced rest won't do you any harm this weather, we are following several of your tips right now! Keep cool.

Blearyeyed profile image
Blearyeyedโ€ข in reply toscats

Yes, it's the involuntary rest for the previous eight months that is beginning to take its toll unfortunately !

Still , I have become quite adept at dancing in my chair over yesterday's Glastonbury coverage and this uplifting ( if not leg lifting !) form of exercise is making me feel a bit better in mind if not in body !

I'm thinking of taking my dancing chair with me when I go to Lakefest in August , imagine that at the front of the stage , I will just have to make sure I don't put it down in the Mosh Pit by mistake!๐Ÿ˜‹๐Ÿ˜จ๐Ÿ˜จ๐Ÿ˜จ๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜˜

scats profile image
scatsโ€ข in reply toBlearyeyed

One of the advantages of not sleeping is being able to see more Glastonbury coverage. There's not enough live music of any kind on TV.

Not sure it counts as dancing if it's in a chair but I think I'd like a dancing chair, I could keep going longer.

Blearyeyed profile image
Blearyeyedโ€ข in reply toscats

Ooh , I don't know , my abs and thighs feel like they got a good work out yesterday while boogeying in the chair to Two Door Cinema Club and the Charlatans.

I might end up as the only housebound PMR sufferer with a six pack at this rate!!

Perhaps I can work out a full set of moves and pass them on for everyone to use when the heat or side effects take them !๐Ÿ˜‹๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜Ž

scats profile image
scatsโ€ข in reply toBlearyeyed

Yes please, and I'm sure we would enjoy a video demonstration.

Blearyeyed profile image
Blearyeyedโ€ข in reply toscats

Don't know whether that would fall into the category of workout video or, " You've Been Framed "!!!๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚

A little bit both I assume .

Anything to keep you all amused , as exercising those laughter muscles is often the best medicine no matter what the weather !

Although , you would probably need, a hand fan and extra drink to recover .

Perhaps I should leave posting it up on YouTube until after this hot spell , wouldn't want to be the cause of a mass admittance to A and E of GCA/ PMR sufferers after they passed out in the heat from laughter !๐Ÿ˜‹๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜˜

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Most certainly agree with โ€œgo with the flowโ€ - could be my mantra!

As we all know (well I do) it can get you into trouble at times, but generally a good move. Which is more than my blue cats ๐Ÿˆ๐Ÿˆ are doing at the moment - now they know how to deal with heat despite their fur coats! Find somewhere cool .......and sleep.

Shortly off for my morning coffee and stroll along the prom before it gets too hot, then back for โ€œcoolingโ€ afternoon.

Blessings my follower(s),

The Goddess Freyja ๐Ÿ‘‘

Blearyeyed profile image
Blearyeyedโ€ข in reply toDorsetLady

Hope you catch a little breeze , and maybe enjoy a little nap with the cats in a shady spot.

teesher profile image
teesher

I would like to suggest that the Emergency Bag contains a chilled bottle of Prosecco.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteerโ€ข in reply toteesher

Now thatโ€™s a good idea! ๐Ÿฅ‚

Blearyeyed profile image
Blearyeyedโ€ข in reply toteesher

Well there's one of those extra tips to add into your Eat, Sleep , Repeat in hot weather.

Perhaps a punnet of strawberries to go with it too , it is Wimbledon next week after all!

Nuff1 profile image
Nuff1

A coolbag freezer pack wrapped in a pillowcase under bedclothes can be useful.

Blearyeyed profile image
Blearyeyedโ€ข in reply toNuff1

Nice , thanks for adding the extra tip , all offerings are gratefully received in this weather x

โ€ข in reply toBlearyeyed

A cooling pad that they use for dogs. Before a dog has had it. Mine relegated to the dog yesterday. I will try a new one for me.

Blearyeyed profile image
Blearyeyedโ€ข in reply to

Large Cool Pad , nice tip.

I don't know about buying a new one for you .

I like the image of you and your dog fighting over who gets possession of the cool pad , you pulling on one side , the dog trying to drag it off you in its teeth at the other!!๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚

Just curl up on it together xxx

โ€ข in reply toBlearyeyed

Not with that stinky hound. ๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚ She wouldn't have it at all. I have to find energy to groom her cos she's like a yeti. Poor thing.

SheffieldJane profile image
SheffieldJane

You are an angel for putting this together for us. ๐ŸŒž

Blearyeyed profile image
Blearyeyedโ€ข in reply toSheffieldJane

Every little helps , although I think I might need to start passing out certificates for all those you read the post and follow it , more of a short course than a quick tip list .

Hope it helps xx

TheHud profile image
TheHud

lol Bleary

The only way I can tell if I am hot now is when My head starts to bang and my eye ball feel like they are on fire. At least I no longer lie there swimming and drowning like the old days. Last night confirmed it for me, no sweat no more. At least I won't dehydrate lol

On a serious note, those of s that don't sweat, are at risk and I am suffering the worst kind of exhaustion I have known in a very long time. It's bad normally but this is bad head banging, tight hat on, teeth bursting, body swelling, blurry exploding eyes, pain all over, joint/ligament slipping, peeled skin, can't eat (apart from chocolate buttons and I don't have any). Possibly because I am thirsty and it's not coming out.

I need to possibly regulate intake of fluid and pop some timolol eye meds in my mouth in the absence of any POTs treatment designed for the purpose ;)

xx

Blearyeyed profile image
Blearyeyedโ€ข in reply toTheHud

Ah, yes , well as you know , although I've had these tips to go by for a long time now , I , like you , have begun to suffer dysautonomia and I wouldn't want that to spread around , not sweating when you are too hot has become quite unbearable and can be dangerous .

Your description of what your body is doing is perfect , you don't sweat, your whole body just prickles , throbs and burns when you try to.

Unless it's cold or at specific times of night then you leak like a broken pipe!

Your water uptake increases but you always feel dehydrated , even in cold weather.

One of your most regular forms of exercise is the wobble for a wee , even when you don't need too.

The head throbbing gets worse when you move and only really subsides when at its worst with pressure on the temples.

In some ways , since getting these health issues, I have relied on these hot weather tips more, even when it isn't hot , and especially if I try to exercise , they do seem to give relief to some of the dysautonomia symptoms .

Especially the spritz bottle , drinking , carrying extra clothes for a sudden change in temperature or the sudden sweats , small meals and the coolant lotion or Vicks on the temples , neck and forehead.

A little desperate pray to whatever diety that springs to mind also keeps the madness at bay , a little!

Thanks for reminding me I'm not alone in this my Merry Chum xxx

Nice job, Aunt Bee

Blearyeyed profile image
Blearyeyedโ€ข in reply to

Hope it helps , have a great weekend !

I was going to do one for people with pre-diabetes and diabetes....so will add remember your blood sugar can be effected. Mine goes up and up but some can go down. The rest you've got.

Blearyeyed profile image
Blearyeyedโ€ข in reply to

Yes , diabetes sufferers have the same level of heat intolerance and their blood sugar changes are more extreme and rapid in hot weather.

Actually , the tips on pacing yourself , and having the little store of juice lollies and tips on meals actually originated from the years of looking after my Type 1 Diabetes suffering OH for years before I really needed that sort of Hot Weather Care.

I think that following the pace with him on holidays for years I probably unintentionally helped control my own POTS/ Dysautonomia condition.

Diabetes style tips , diet and self care has given me years more quality of life with my various chronic non pain induced symptoms ( and, unfortunately, masked the fact that I had the condition during the years in diagnosis!) so , until now , I haven't had to resort to drug or medical intervention to cope with it's disabling effects.

S4ndy profile image
S4ndy

Great post Bee. Here's my top tip. Freeze bottles of water. Wrap them in a flannel when going out. You can then drink the ice cold water as it melts or use the cool flannel to cool hot face etc. I find the wrapped cold bottle makes a good coldpack for the back of the neck. I find this very cooling.

Blearyeyed profile image
Blearyeyedโ€ข in reply toS4ndy

Yes , I usually freeze ice cubes or strips in a reuseable tray and add to refrigerated water , because even before I tried being plastic bottle free , I did have the odd leaky bottle moment when the bottles got splits invisible to the eye while the ice grew ( even after trying to outwit it and leaving space for the ice to grow ) and then the cooling feeling I got was either down my back or in my shoe as it dropped from my bag.

That might just be my luck though !

I have a cooling neck scarf. Not the height of fashion but does the job all day.

Blearyeyed profile image
Blearyeyedโ€ข in reply to

Yes, good idea!

That's why I say spray your neck with your spritz not your head and if it's very hot I spritz my all purpose emergency bag scarf in the area that goes round my neck and can tie the other part so it looks like I meant to wear it as an accessory!

The neck is definitely the part to cool instead of your head.

It instantly cools more of your body quicker without the rebound head ache .

My scarf has been a life saver in lots of ways as you can also spritz it and cool a sore joint by tying around it for support, tie it round your lumbar region if your back and hips start hurting , make a wrap band on your head if it's throbbing , and many more uses ....

โ€ข in reply toBlearyeyed

It has non toxic gel in it a d you soak for 30mins in cold water and it stays chilled for a day or two. Last summer it kept me alive!

Blearyeyed profile image
Blearyeyedโ€ข in reply to

Is it a particular make specifically shaped for your neck .

If it can stay cool that long I think I might splash out .

Come on Poops ! Spill the beans ! what's it called , and where can we get one !!?๐Ÿ˜‹๐Ÿ˜˜

โ€ข in reply toBlearyeyed

Beans spilled...

amazon.co.uk/gp/p13n-mobile...

Blearyeyed profile image
Blearyeyedโ€ข in reply to

Definitely going to get a few of the cute polka dot ones for those days out and festivals by the hot stage , thanks .

Noticed they have black and red bandana versions fir the Men or Rock Chicks and larger cooling towels for use in the exercise class .

I think the towels will be really useful as an addition to your kit bag if you go to classes so you can lie on a cooling surface and don't suffer from overheating from exercise.

Thanks for giving us the link to lots of options for all those times we need to ,

" Be Cool" , not just in the hot weather.

โ€ข in reply toBlearyeyed

Thought I would show the full range!

โ€ข in reply toBlearyeyed

You could edit a line about them in main post. It was someone on here who recommended these a year or two ago.

Blearyeyed profile image
Blearyeyedโ€ข in reply to

Or maybe you could put it up as a separate quick post and link so it doesn't get lost in the list of tips , I think people would find it very handy xx

โ€ข in reply toBlearyeyed

Ok. Will do it's nice and cool today thank god!

Blearyeyed profile image
Blearyeyedโ€ข in reply to

I know what you mean , when the good old POTS / Dysautonomia stepped in earlier on , I had my family in pleats of laughter as usual , when, they were all sweltering in shorts and t-shirts and I stepped out and within minutes had had to put my cardigan on and start sucking my thumbs to stop them going numb!!!

Oh the joys of chronic illness , a new little irritating symptom to defeat a day !!๐Ÿ˜‚๐Ÿ˜‚

markbenjamin57 profile image
markbenjamin57

Hi Bee

Thanks for a lovely, practical and well-informed Post - and with a sprinkling of gentle humour to tease the appetites of those of Us Lot who appreciate it. Keep it up! ;-)

Best wishes

MB

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