LUPUS UK
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Does Everything Hurt Today?

After a spell of much bed washing due to drooly bowels, then finding yesterday that my water was doing its favourite very hot then very cold trick, just when I badly needed to sluice off in the night, my aches and pains have really increased. The unreliable water is not compatible with Raynaud's either. ❄️🛁❄️ British Gas responded quickly to my weeping and blubbering.

This morning was one of those when I wished I hadn't woken up because every bit of me seemed to hurt. The dog was pretty insistent so I gave it five minutes before giving in to his gentle whimpers.

💡moment. My hair doesn't hurt. Every little helps 👍

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Oh Lupi 😢 I really hope that your pain eases. I find hot water bottles can help. Snuggle under a blanket hugging the hot water bottle. Helps with the Raynaud’s too. If you feel able to the soaking in a hot bath helps me too.

Glad that British Gas helped you so promptly. Water playing up is all you need on top of everything else.

Take it easy, snuggle up with a film and I hope you feel better soon. Xx

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Poor dab, how horrible. I find that keeping the central heating on does make a difference. Even when I don't consciously feel cold, I notice that I'm much more likely to get Raynauds symptoms later in the day, as if my body has exhausted its capacity to keep warm (if that makes sense). That's obvious, really, isn't it?

I had corker of a day yesterday, with a migraine of epic proportions, including the bizarre optical illusion that I was lying in a darkened room where someone was flicking the lightswitch on and off about 10 times a second - for four hours straight. Like my last telly, just before it exploded.

Projecting your consciousness into your hair could be worth a try. I often wonder at people who take ketamine or LSD to achieve altered states of consciousness. So much cheaper to develop a systemic auto-immune disease! x

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Interesting Mike. Even with the heating on, I feel the cold more as the day goes on. I think you may be right about the body tiring through the day.

Your migraine sounds like a stinker. I suppose an auto immune disorder is cheaper than LSD or ketamine, but, unless you get addicted to them, at least there's a bloomin' choice! x

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Mike I’m loving your optimism - it’s contagious! X

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Ahh I so relate to this LK. You poor thing - I’m with you all the way. Apart from the hot water crisis which very fortunately we don’t have...yet!!

I have 2 out of 3 sons at home tonight and they are lovely but so dominating by their very male presence. And sibling rivalry is already kicking in as youngest son reluctantly makes his way over to us from his freezing but spacious student tenement flat in Glasgow tonight - knowing that he will be sharing a floor of our living room bedroom with my middle son, us and our two dogs - who is the easy ozy one - while oldest with Aspergers (the dark clouds prone to descend especially on Xmas day around food and presents!) has our spare room with double bed all to himself because neither of his brothers will share with him!!

So in the middle of last night the pain drove into the bones of my feet, ankles, shins after a faint on route to toilet for a pee. And it just hasn’t let up at all!

Now everything hurts in my peripheries and I’ve had three of these mini faints already today - ended up lying on bathroom floor tonight until my equilibrium returned. Both boys horrified, hubby rolling his eyes says “ach be warned it’s happening a lot these days boys - whenever your mother needs a pee, poo or starts drinking or eating or gets up too fast (or despite very slow rising even) - you’ll get used to it - just carry a pillow about - the dogs have learned to scarper in case she lands on them !”. Well thanks for that my lovely hubby?!!!

Fortunately I’ve just been reading about vasovagal syncope (which drowned my poor dad believe it or not!) and orthostatic hypotension and the role played by the vagus nerve in regulating the autonomic nervous system. Shame we can’t afford any carpets or rugs just now but hey ho I’ve got my much wishes for house full for Xmas and I MUST just keep calm and and carry on as that blasted poster goes!!! Xx

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Oh Lupiknits, sorry to hear you've not been doing well.

It's a nightmare when the water's not right. A couple of years ago my boiler broke and it took 2 weeks for the letting agent to go out and fix it and it was a nightmare for my Raynauds! I now am a nightmare with keeping the central heating on, much to the dismay of my housemates in a student house!

My personal trick is thermals, top, jumper, scarf a PJ hoodie and a prayer to my Raynauds God if I've got time. Do you have any treatment for your Raynauds?

Hoping you get well soon!

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Thanks Amy. I'm so glad I no longer need to live in student places. The worst was an unheated garret during the "Winter of Discontent". At least I just suffered from normal feelings of cold then.

I can afford a rip off service contract with British Gas now, and I'm entered on the system as "vulnerable, lives alone" which puts me at the head of the breakdown list. The hot/cold water thing has happened before and given me a teeny phobia.

Most of the time I'm thermal layered with an electric warmer and plenty of instant hand warmers though. All else fails, and it's that plus a huge fleece blanket and warm dog rolled up with me 🐾

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Thankfully the lads I live with are sympathetic and so we've picked this as our 'student luxury' after a bit of debate!

I'm with First Utility at the moment and they've got me a decently priced scheme. Good thing British Gas lets you jump the queue though, especially when you pay a lot!

Electric heater and a dog all snuggled sounds like a dream! I imagine he's especially warm when he's wrapped up in your knitting.

My cat isn't a lap cat but I imagine if she was, I wouldn't be able to move or do anything. Can't live under a blanket or a pet all day!

Hope you have a lovely Christmas and enjoy your tea on Wednesday!

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Thanks Amy, and I hope you have good days, too! I would have a cat, but am allergic to them. From what I've heard they can be knitting guerillas though! x

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Oh boy Twitchy, you have a stonking time going on. I can imagine your sons may well be a bit taken aback. I'm afraid sibling fisticuffs never calmed between my three brothers no matter what went on with my mother, but they really were scunners. I hope, maybe, yours can try to help mammy and forget the rest of it?

Number One Son came back for his "holiday", four days of which have already been spent working ( love them or hate 'em, journalists always seem to be in call). He gave me a big hug, which made me burp ( how times change) but I avoid looking at his face for those first few seconds because I can see his eyes are a bit damp when he hasn't seen me for a bit.

At least it's now clear I'm not having Christmas with them, the boys are off and running with mutters of "black pudding" and " potato skin mash" . We are booked in for a long traditional afternoon tea next Weds instead. Not necessarily the best nutitionally, but over the course of two hours and several pots of tea it's suprising how much scone with clotted cream and jam followed by cake I can get down.

Hope it improves for you, pal xx

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Oh how you’ve made me grin with your equivalent plans LK. Isn’t it amazing indeed what we can get down us when it’s delicious and unhealthy - especially when accompanied by lashings of tea!

I forgot to say that my man also told them that I have a fungal infection (now add extremely painful, itchy piles into the equation!!!) and suddenly my bath is looking clean and individual towels are carefully colour coded and our tiny spare loo and shower, usually the preserve of the hardy and desperate - has become “the boy’s washroom”... yay?!! 🤪😬🤗

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Every cloud Twitchy, every cloud x

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Indeed LK. X

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