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 🌞
Anybody else feel like a vampire 🧛♀️ - LUPUS UK
Anybody else feel like a vampire 🧛♀️
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
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.
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.
Good Mother.
Children always criticise us!
Yep..me too!! Safest place for me is in a cool dark cellar!! 🧛
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...
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
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
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!