Brrr it is cold here this morning. What is the weather like where you are? And how does that effect you?

  • I've got layers of clothing and hot drinks, and I am trying to keep my feet warm. Thank goodness for my heater. The cat is making me move because two minutes after each time I let her out she wants to come in again. Off I go to make another hot cuppa. Best wishes everyone.

  • @Dot hi dot,

    I'm not looking forward to winter. I am rugged up, have the heater on and a wheatbag around my neck. I also have a problem with suddenly becoming very hot, sweating etc so I turn the heater on and off.

  • @iris Hooray for wheat bags! (I mostly use them for my feet). And boo for getting hot and having to readjust everything. My heater gets a lot of on-offing too.

  • Hi @Dot : The cold is starting to set in. The nights can get down to 1 or 2 degrees and it doesn't reach top temp until around 1-2 pm. We've started the wood fire which is usual for this time of year but such a chore for the household. My partner wasn't able to gather our wood from the forest when it opened in March as I was too ill and needed a lot of care. Unfortunately we didn't have any one to be with me during the times needed to go out. We had some wood but this is going to be problem for us. We will need to buy bulk loads this year: We are thinking of an illusion gas heater that runs on LPG bottles as a better option. It sounds great to me, to have an easier, instant heat source. This morning the house was freezing and the only instant heat is a fake log fan heater. It's ok for the area your sitting in, but it certainly doesn't heat the house. I end up turning it on and off as well. It drives everyone else mad but I can't stand to be overheated. We've swapped to winter doonas now and the electric blanket is great, but I end up turning that on and off all the time. I don't look forward to winter at all as I tend to feel worse from the lack of vitamin d from the sun and I feel even more housebound. A lot of things stop in our small town area and isolation can be worse. I feel the cold weather further restricts my ability to connect to the community. Winter activities are far and few when living with ME. If you've got any ideas or tips on this, I'd be glad to hear them. Keep warm! ( only when your body tells you ... ) 🌧

  • Before I got sick, winter was my favorite time of year because it was the only time I could go out walking without getting too hot! Now that I can't walk, I have the opposite problem - my legs get really cold from being immobile. So I ordered a blanket to put on my lap when I'm out in my wheelchair. I miss being able to go out for walks in the rain, too. I'm trying to figure out how to make a waterproof poncho that I can drape over my chair when I go out to keep me and the controls dry. I don't like any of the ones I've seen for sale online.

    On the whole, I love this weather, the cold clears my head and lowers my heart rate saving energy. But I do struggle when I have to go in and out of buildings that are heated because I put on lots of layers to be comfortable out in the cold, only to overheat as soon as I get inside. Very frustrating and exhausting having to take multiple layers on and off all the time.

  • Oh a quick tip for keeping warm: I've found an old fashioned hot water bottle much better than wheat packs! Seems to stay warm much longer. The rubbery smell can bother me though.

  • @river I'm a fan of hot water bottles as I used them before I got the electric blanket. I found that having a knitted hot water bottle cover, over the rubber stops the rubbery smell.

  • @crashdummy Oh so much sympathy, a wood fire is just the loveliest heat, and it must be dreadfully hard to give it up. I know how much work it takes though, and the first rule is not to make ourselves worse, so good decision.

    My first winters with ME/CFS were terrible because I kept getting cold right through, and it took days to recover. The trick for me was not to get cold in the first place. I finally learned it! Heater on as soon as I got up. Thermal underwear, lots of layers, ugg boots, woollen socks... scarves and hats if I went out.

    If I start to get cold I have to accept my body can't heat itself back up. I can try a hot cuppa and a heat bag on my feet, and the heater turned up... but sometimes that isn't enough and a warm/hot bath is the only thing to warm me right through.

    I've got so good at it now (touch wood and whistle) that I hate summer more (I wilt).

    In bed, if my feet are warm, I am okay. An electric blanket doesn't suit me. In winter it is a hot water bottle AND a couple of heat bags 😄

    Re winter activities, it is hard. I have a very small social life. I am lucky to have my daughter's family near, and good neighbours, and I do use online forums and facebook to be more social. I hope you can find ways to avoid feeling shut in over winter.

  • @crashdummy I have one of those knitted covers but it doesn't seem to help 😞

  • Community Moderator

    Great thread 🙂 I'm in Canberra, and the weather is cooling day-by day, as it does this time of year. I tend to feel the cold quite a bit (mostly because I'm inactive, so moving around can warm me up half-decently, until the PEM hits and then I'm exhausted and even colder!), so have to be careful to stay warm.

    Lots of great ideas of how to do that as well. I don't think it's been mentioned, but sometimes when I'm quite cool I "double-beanie" - so a smaller beanie on the inside, and a slightly larger one on the out - seems to help keep me warmer than otherwise. A hoodie over a double-beanie is even better 🙂 I don't use it myself, but my wife has an electric throw that she swears by as well (just keep in mind it may not play nice with dustmite allergies, as I doubt it can be put through a high-temperature wash cycle).

  • @river You might be too sick to do this but just in case it is useful.
    I know the sicker I am the more smells effect me. So awful to need the hot water bottle but find the smell unbearable.

  • @river So sorry you can't still go for walks on a brisk winter day. Can you use your legs at all now?
    I hope your blanket works well, Hmm, I am imagining a good umbrella or roof that you could touch a button and it would go up on your chair to protect you from rain. You'd end up looking like 'Mrs Armitage on wheels'*OZSExxHrSv82toyvivQW_w.jpeg 😄
    I do hope the right rain poncho comes along. Another clothing item for @willowbark to manufacture!
    Isn't it ridiculous how warm buildings are kept, when everyone is dressed for a cold day.

  • @Dot hahaha I am well on my way to bring Mrs Armitage already, with all the things I've rigged up on my chair!
    I can use my legs but the smallest amount of walking gives me terrible PEM, even with stopping to rest periodically. Don't know what it is about walking - there are other kinds of gentle movement that don't affect me nearly as badly!

  • @river I agree about the walking. It usually leaves me exhausted to the point where I become very dizzy and almost in collapse mode. I like to walk and the fresh air is great but I can't wander too far on my own as I have ended up in the floppy collapse and been unable to get up. It feels great to move, even if it is only around the house, but PEM spares no-one and negates any of the joy. I don't use a chair as I am usually only on the property and it would require a 4wd one to get it around. I chuckled at the gadgets you may have designed for trying to keep the rain off; ironically it takes the users of designed mobility aids to perfect the obvious flaws. The wheelchair hack! I love it. Hopefully your ingenuity can perfect it, and allow the mobility you need without contending with the elements. The last thing you need is to go walking and end up in PEM sorry that your ability to walk unaided, has diminished to perhaps just a few steps; that can hardly be called a walk. It is a viscous cycle and the longer we live with immobility, the weaker our leg muscles become. Love the humour of @Dot and yourself. It makes me smile🤓

  • @crashdummy @river I also find walking exacerbates my ME/CFS symptoms. I think the size of muscles we are using makes a difference, as well as how vigorously we use them. When walking we are using those big muscles in our thighs, and I think they use up our energy bank quickly.

    When I was sickest I realised squatting to get something from a low cupboard was enough to knock me out for the day, and I figured it was because I used my biggest muscles.

    Most days I am not well enough to walk around the block without it effecting me badly (usually the next day). I have to stick to pottering around and making sure I rest in between.


  • My body copes better when it's consistently cold and I was able to move to a place with fairly consistently cool to cold temperatures. For me the ideal indoor temperature in winter is 10°-12°C, with humidity at or below 70%, so my body finds winter the easiest of the seasons.

    I still need to keep my core temperature up so I wear warm layers. On my top half I wear long sleeved merino base layers (bought on clearance from places like Icebreaker, Kathmandu and Macpac), and on my bottom half fleece pants.

    When confined to the horizontal and not in bed on winter days I'll be under a heated throw, which is very cheap to run.

  • Hi, Dot,

    I do not cope well with the cold weather either. I rug up with skivvy, cardigan and a big woolly coat, woolly track pants, beanie and gloves,2 pairs of socks and boots. My ears always feel really cold and get red inside. It has been really dull, overcast and cold here too but little rain. We are waiting on the installation of a new combustion heater as the old one has rusted out.

  • Nearly forgot, In one of my past posts once someone suggested wearing a dressing gown over clothes to keep warm.

  • @donnamarie Hooray for dressing gowns! I have about 8!
    I hope that new combustion heater gets installed soon.

  • @pemdelapem So glad you are able to live in a place that suits your needs. Brr, too cold for me, but I am very similar with humidity. Hooray for merino underwear!

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