Does anyone have any tips for staying with people, when their house is cold, and maybe they don't put on the heating very much ?

[JemimaDoll]

I feel like I'm being impolite to be cold, as if I am commenting on the way my hosts are heating their house! But of course, none of us can help it, when we have Raynaud's. But I feel like I'm being a bit of a difficult house guest, and I really don't mean to be.

[Carolanne]

I really would consider not staying with them. I just could not tolerate the cold. I have breathing problems because of lung fibrosis and will not stay with my sister because she smokes and I cannot tolerate the smokey atmosphere. She has offered to smoke in another room but it is her house and I would want to avoid any awkwardness.

[JemimaDoll in reply to Carolanne]

Thank you for your reply. Yes, I just fear being seen as awkward too. It sounds difficult with your sister and your lung fibrosis. I hope there are some warm houses you can visit, too!

[pcokfarm]

My motherinlaws house was like this. I learned to layer with lots of wool, and she would give me a down comforter to wrap around me. Sometimes she even put on a space heater. I didn't have an attack, but I certainly wasn';t comfortable. What I've found most people dont' under stand is the pain that accompanies the cold.

[JemimaDoll in reply to pcokfarm]

Yes, I do layer with lots of materials, and to visit for even a short time looks like I am staying for at least a week with the size of the luggage I bring - containing all my layers of fleece pyjamas and thermals and socks and very warm jumpers! I also wrap myself in balnkets too. But somehow I still manage to get caught out if they don't keep their house as as warm as I keep mine. I'm lucky that I don't get actual pain with the cold - just stinging over the cold parts of me, and numbness. Do you take anything for the pain you get?

[Noddy32]

I have this problem

and perhaps a bigger one

I have the FEAR of being cold

Before going anywhere overnight or just for an hour or two

I want to find out, how warm/cold it will (or might) be

I then tend to put on (or take with me, in a bag)

thick underwear

I sometimes explain to workmates, or relations

that I have a disability - but not a visible one

I explain that if I was in a wheel chair or on crutches etc

they would provide suitable facilities or assistance

so why not "turn up the heat" for my disability

Have a happy Christmas and a WARM new year

[JemimaDoll in reply to Noddy32]

Thank you for this. I have not so much a fear, but a feeling of being stressed at the thought of being cold, and then feeling stressed while enduring the cold, and not being able to get warm.

It's such a difficult thing to explain to people, isn't it? Especially if they are someone who doesn't feel the cold at all.

I hope you have a WARM New Year too!

[tracynoe]

Everyone now knows that if I am going to their place that they have to boost the heating they have watched me go blue in the past and I have to say it scared them so they all turn up the heat now. The worst offender used to be my Mum in law she just wouldn't understand the need for me and the increased heat so I had to stop going. Sometimes you have to stand firm for the sake of your own health.

[JemimaDoll in reply to tracynoe]

Thank you. You poor thing - going blue. Yes, I think it's a case of learning as you go along - which are the quite cold, but bearable places, and which are the unbelievably cold places that you can't feel happy about going back to.

[zenabb]

You have to explain to your friends about your Raynaud's. A lot of people have heard of it by now and if they haven't they should know. We need to spread the knowledge and make life easier to all of us. But it's the way you say it that is important. Not angry. Not apologetic (it is not your fault) but just as a matter of interest. e.g. "You know if have this condition. Have you heard of it? It's called Raynaud's. Feel my hands. I am frozen all the time." Realise also that turning up the heat may make them uncomfortable. And of course take all the necessary precautions yourself and laugh about it.

[JemimaDoll in reply to zenabb]

Thank you. Yes, I do explain to friends and they try, but not all of them get it completely, or they seem to, but don't seem to link it with practical things like keeping the heat on, and not turning it off.

At an old workplace, I froze on a daily basis because they put very cold air conditioning on at 18 degrees in the Winter! I was so desperate that I waved my white fingers at them and really tried to explain it yet again, and they still put on the air conditioning - 'just for a few minutes, and then we'll turn it off' - ie, with plenty of time to have another Raynaud's attack! (Previously I had tried very matter of fact, polite approaches too).

And of course, I am so aware that turning up the heat makes many people uncomfortable because they may be worried about the cost, and they feel too hot to do that. I feel I cannot discount their feelings of being too hot, as that is how they are, and what their body is telling them, just as our bodies are telling us we are too cold!

I try to be positive in the sense that I have a large collection of gloves, scarves, hats and thermals, etc....

[zenabb in reply to JemimaDoll]

Difficult, isn't it.

[overnighthearingloss in reply to zenabb]

My brother has just turned up to deliver a MOJO wristband. Something he has faith in to cure all ills.

Bless. They do think they are trying.

Nothing to lose by wearing it though, so here goes

[rosie_girl]

I would say to layer up have thermals on, take hot packs you can put in your pockets & maybe a blanket, also try & drink lots of warm drinks, there's some lovely winter warmer juices if you get fed up of tea & coffee. I get cold in my own house ! Even emptying the washing machine sets me off it doesn't matter how hot a place is my hands & feet are usually cold & in pain. Unfortunately no one can understand your own pain, even other people who suffer have different levels of tolerance. My family are the worst for understanding & I usually get "oh you're a little cold are you" when I'm in pain & holding back tears. Tbh if you think it will be too much for you to stand maybe cancel or have people to your house where you know you'll be warn enough.

[JemimaDoll in reply to rosie_girl]

Thank you for your tips. I do do all the layering - as much as possible so that I can still move around! I usually drink lots of hot drinks and use blankets too. I use hand warmers sometimes, but don't find them that great. l should try to use them more. I find the ones you have to reactivate by boiling them in water a bit of a pain. Are there any that you would particularly recommend?

I am sorry you have so much pain with it all - I am lucky just to get stinging and numbness.

[Yorky in reply to JemimaDoll]

Hello,I like the Hot Rox hand warmers from the RSA, they have an on/off switch and are rechargeable. I also have the EXO heated insoles in my outdoor boots, which I transfer to bootee slippers indoors - they are brilliant - couldn't survive without them. I have a fleece shawl with pockets which is very usefull, less bulky than a blanket, but can put the warmers in the pockets. Hope this helps a little. Keep warm

[JemimaDoll in reply to Yorky]

Thanks for your reply and the recommendations. Keep warm too!

[tall-tim]

The same advice as I give myself at home: wrist warmers, mittens with long cuffs, avoid tea and coffee, get plenty of high-protein food, wear thermal long-johns and vest, wear wool not artificial fibres, keep core body temperature up, wear a scarf to ensure heat does not leak out round the neck and throat...

[JemimaDoll in reply to tall-tim]

Thank you for your tips. One thing I haven't tried is wrist warmers, so will try to buy some. I do all the rest and have long ago researched the best fibres for climbing up mountains in the Winter, and I buy those ! I don't layer with cotton as it is not high wicking,etc.What I will try as well is to wear a scarf indoors as well as outdoors. Keep warm.

[stevieboy]

if staying take 2 hotwater bottles .Take a blanket heat pads sheepskin boots wear long johns vests and keep on move be a handy lady

[JemimaDoll in reply to stevieboy]

I am normally kindly offered a blanket and a hot water bottle, but I was thinking recently how great it would be to have 2 hot water bottles ! So I will try to bring an extra one next time, and use heat pads more than I do. I do find it hard to keep on the move in a cold house, because the only rooms to move to are often even colder! So I tend to huddle and keep still, which isn't the best thing....Thank you...

[stevieboy in reply to JemimaDoll]

stay a little less time .Take 3 hot waterbottles ha ha one for feet one for back one for lap and whip the blanket on the heater .Do some jogging have a dance .

go for a coffee go to the spa sit in hot tub .drink some brandy

[JemimaDoll in reply to stevieboy]

Thanks for these tips too!

[JemimaDoll in reply to stevieboy]

Thanks for your advice. To take 2 hot water bottles is a very good idea!

[Coldfeet]

Exo heated products are great for ujp to 4 hrs at a time, I use the jacket or the belt, the foot warmers are also fantastic but the wires are a bit of a faff. If my body is warm my hands and feet are less likely to freeze. A Plug in electric blanket throw gives a subtle hint without having to impose your heating needs onto anyone else!

[JemimaDoll in reply to Coldfeet]

Thanks for these tips !

[uknlv]

I had this all the time when I went to my in-laws, she would give me a blanket and that didn't help as you can't stay under it all the time and all it takes is a minute or so for me to get a Raynaud's attack. And if my sister-in-law is there then it is a constant 'It is to hot, turn down the heat' or she goes and turns it down. One year I was so bundled up I could hardly move, so I told my in-laws that we couldn't come anymore in the cold months because I couldn't stand the cold, or the pain and suffering after the attacks. Which meant no more Christmas' at her house, she realized that I was not just being akward then and now the heat is kept up and they turn the heater on for me. Which helps. But this year I am going to a different family members house for Christmas and I know I am going to suffer, packing lots of warm fleecy items and gloves. But is terrible to have to be the Michelan man just to go somewhere.

[JemimaDoll in reply to uknlv]

I feel for you. Even if people seem to understand but they are always hot, they can't sit in the same room as me, and complain they are hot, and then I feel bad for making them uncomfortable! Or they get annoyed (while pretending they're not) if you ask them to keep the radiators on an hour after you have gone to bed. I had this recently. Or they heat the room but want to leave the door open, and then there is a big draught on you! I hope your Christmas wasn't too bad at your other family member's house? Being the Michelin man only helps, I find, in combination with a warm house.

[overnighthearingloss]

I stayed for Christmas with friends who had hardly any heating. I would be permanently hogging the fire and often with coat and gloves on. It was a cause of amusement for the man of the house as he never feels the cold at all. They live in an idyllic area to spend Christmas but being cold for the duration of the stay took off some of the shine.

Having to sit tucked up in blankets and make numerous hot drinks was the way I survived.

[JemimaDoll in reply to overnighthearingloss]

Hi. This sounds so uncomfortable. So many of us have this problems, it seems. Terrible for the man of the house to find it amusing. I hope this Christmas was warmer for you.

[Kuhu]

i was recently given an unusual gift. It is an electric body warmer - for my back. Of course I have to sit near to an electric socket to use it, but it has a long cable. I can even use it in bed. Six heat settings and turns itself off after 90mins. It is lovely and a big help in houses where the heating is a bit low.

Sorry, I don't know its name, but they got it in Lidl.

[AHM42]

I have a great son but neither he nor his wife really understand just how the cold affects me.

The last time I stayed there I wore as many clothes as I had with me and kept my anorak on during the meal to make the point. It was a purple one and matched the colour of my hands. I think they got the message!! They have even bought an electric blanket for my bed when I stay there.

[Kuhu]

The "thing from Lidl" is a Back and Neck Heating Pad from Sanitas. It costs £14.99 and is in the current Lidl "special offers" leaflet. My best gift this Christmas!!

Jemima - I knit my own wrist bands. If you can hold knitting needles, why not try that. Very easy.

[graygirl1]

This is difficult, you don't want to appear to be moaning about your host. People who do not have this problem don't realise how we suffer but in my experience I find just letting folks know how cold I feel and why does help. If your host is a caring person I am sure he/she will be happy to boost the heating for you for a while.

Energy prices are high and many are trying to cut down. If you are so cold that you cannot enjoy your visit, and if your host is unable to provide more warmth for you, just thank them for the invitation and explain why you cannot stay.

Your host may or may not feel offended, but in the end your health and well-being is more important. I would stay in my own home and be warm and happy.

Best wishes for your improved health.

[Grandma7]

I know how you feel.. My brother's house is cold.. Air on windows open an I'm with my gloves an jacket on... But when I spend the night there I surly bring my heavy blankets... Don't be afraid to speak up it is your health an if they don't understand well let them know...

[graygirl1]

I would tell them, with respect, that due to my condition I cannot be in a cold house and decline their invitation. You have nothing to feel bad about. I wouldn't insist they put the heating on for me but there is no way I would go and suffer in a cold house. I would rather stay at home and keep warm. Then again, not everyone is like myself. I am at a stage in life where I have decided to do what is best for my health and my well-being. I am not worried what anyone else thinks. Only another Raynaud's sufferer knows how you feel and it's dammed miserable being so cold all the time. I'm cold even when my house is piping hot never mind when there is little or no heating.

When my friends and family come to visit I make sure they are welcomed and comfortable. I care about their welfare and want them to feel at home. I know heating is expensive and folks are struggling but I would not expect anyone to come to my house if I didn't put my heating on for whatever reason.

Perhaps if they knew a bit more about Raynaud's it would help. What do you think?

Good luck!