Anybody else feel like a vampire 🧛‍♀️ - LUPUS UK

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Anybody else feel like a vampire 🧛‍♀️

Ianrussell69 profile image
16 Replies

4 glorious days of sunshine covered in factor 50 and long sleeved shirt and a hat and fatigue and sore muscle and joints fantastic looking forward to the summer and rainods in the winter 🤬🤬🤬🤬🤬🤬🤬whinge over hope you are all well and keep out of the sun 🌞

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Ianrussell69 profile image
Ianrussell69
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16 Replies
Lisalou19 profile image
Lisalou19

This is how I feel right now 😑. As soon as the suns out and I dare venture out I get terribly painful stiff feet!!!!!! I thought this symptom had gone for good! But nooooooo x

Kazunlocked profile image
Kazunlocked

I can feel the sun 'bite' me even just walking a few meters from car to shop entry. This is nine years down the road.

Lupiknits profile image
Lupiknits

I hide inside, enjoy the sounds of children playing, remember the days I told my own children the ice cream vans only played that music when they had run out of ice cream, and hobble around the block with the hound looking even worse that the strange dog lady in winter.

My poor dog feels the heat so, although he can usually run about 40mph, he idles, and at the moment can hardly see thanks to a canine autoimmune condition of the eye.

We both come back to hide.

Lisalou19 profile image
Lisalou19 in reply toLupiknits

No ice cream 🤣🤣🤣🤣 love it x

Lupiknits profile image
Lupiknits in reply toLisalou19

Cruel, as my adult sons now say 😉

Krazykat26 profile image
Krazykat26 in reply toLupiknits

😂🤣😂..I used to do the same!!! My girls got around it when we were at festivals..mum the ice cream vans quiet..hopeful looks etc!!! Xx

JStro52 profile image
JStro52

Yes, and a lot of my friends call me nosferatu!

Ianrussell69 profile image
Ianrussell69 in reply toJStro52

Just waiting to burst into flames 🤬

Good Mother.

Children always criticise us!

Krazykat26 profile image
Krazykat26

Yep..me too!! Safest place for me is in a cool dark cellar!! 🧛

Mainecoone profile image
Mainecoone

Am new to this site (not diagnosis) and oh you made me belly laugh! 🤣🤣🤣 Thank you for that... hubby always comments he is married to a vampire 🧛🏼‍♀️ .... what a fab community, wish i found you all earlier...

Wendy39 profile image
Wendy39

Yes!

I have started wearing my long sleeved SPF50+ tops. I always wear trousers that aren’t see-through and a hat. Obligatory SPF50 on face and hands.

We went for a walk at the weekend with friends and kids, it was extremely low tide, so we were able to walk along the beach from one resort to another. It was beautiful weather for it and not too hot. But, I am still feeling it 4 days later. Between Saturdays walk and sitting out for 2 hours on Sunday, I’ve been hiding inside ever since!

It’s cruel because in some ways, I still love the warmth of summer on my bones. I hate winter and seem to feel the cold more and more each year. But hate hot summer days too, they exhaust me.

If I have been out for too long, despite all my precautions to protect myself, I get tingling in my arms and hands - it seems to set my nerve endings on fire? 🔥 ☀️

At least we’re not alone.

Best wishes

Wendy

Ianrussell69 profile image
Ianrussell69 in reply toWendy39

Had a bit of sun on good Friday took my wife and daughters for a meal and a drink and been feeling it but it’s getting better sat through to Monday were bad Tuesday Wednesday bit of a blar (tramadol) then Wednesday night very bad 😓 all night but feel loads better now it’s always the same joint muscles getting worse to the point of tramadol stuper then very bad swets then feeling better weird

Wendy39 profile image
Wendy39 in reply toIanrussell69

It’s so unfair. We always pay a price for doing something “normal”. Feel better soon.

Ianrussell69 profile image
Ianrussell69 in reply toWendy39

Thanks

Barbara17 profile image
Barbara17

When she goes out with me my daughter says it’s like being out with Morticia from the Addams family. I wear more clothes in summer than in winter!

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