Wehoo the sun is out over here in the... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Wehoo the sun is out over here in the UK - the flip flops are on, the toes are blue ;)

living-the-dream-ssc-ray profile image

HI everyone !

I am very excited about being able to not have to wear my thick socks and Ugg boots !!

Yesterday I was able to wear my pink pair of trainers, though I had to wear thick ankle socks so my 'look' was a bit 80s with my knee length denim skirt! I could have been an extra on the Grease film set ! haha

AND extra bonus - my thinsulate gloves were in my handbag ! I could not risk leaving them at home ! And actually being able to wear a skirt was a bonus, as I live in fleecy track suit bottoms for most of the year !

The calcium lumps on both of my knees are not used to this light exposure, hopefully the exposure to the elements will help the healing process so that the lumps push off !!

Unfortunately the last calcium lumps on my knees, which did eventually heal after a year or so, have left quite big holes / scars, and are in different locations to the current active ones.

Andso, I do not really like flashing my knees out and about for public viewing ! I am sure that nobody would notice, but I am aware of the presence of one of the signs of latent stage diffuse systemic sclerosis !

I remind myself of Dr Seuss' quote 'those that mind dont matter, and those that matter dont mind'. So thats good enough for me !

I am not sure how long the flip flops will be on for..... what started out as a blue tinge has now gone a bit bluer and I am starting to lose the sensation in my toes, so I think the Uggs will have to make a return ! boo hoo, however, my ankles appreciate the extra support !!

my eskimo look is slowly disappearing as the sky gets bluer and the daylight gets longer ! I am still sleeping with a winter duvet and pyjamas were substituted years ago with track suit bottoms, t shirt and a fleece ! Last night was the first night this year that I felt warm in bed ! wehoo !

The muscular pain is still quite disabilitating - especially my back, making sitting or standing uncomfortable ! I have to keep changing position... one of the reasons why my trips to the cinema ceased years ago.

Luckily I have a very comfortable sofa which I have definitely bonded with !

How does the warmer weather help with anybody else on the raynauds scelroderma diagnosis journey ??

Anyone else stripping off a layer of the eskimo outfit ?

Happy summer solstice everyone !!

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living-the-dream-ssc-ray
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7 Replies
zenabb profile image
zenabb

Yes, I no longer, on some days, have to wear my woolly coat, but I always take it with me, just in case. I feel lighter for it.

sandraj profile image
sandraj

Glad you enjoyed a bit of warmth, but in the UK it is limited - I remember being almost housebound for a good part of the year. 11 years ago my whole family moved to Southern Spain to see if it would improve my life .... and yes it has :) I have fantastic medical treatment and yes those long hot sunny days really help. I still have problems but there are more good bits in between. So I hope you have more sun on the way and enjoy wearing a few less layers.

ah sandraj and zenabb - thanks for sharing !!

I am pretty much housebound here in the UK all year round also !

I lived in the Canary islands in 2003 for 5 months, and yes I found that the warmer weather did help but I still had a few other problems !

My long term vision is to spend the winters in a bikini surrounded with sunshine and blue sky... it really is a long winter over here, sat in dressed as an eskimo !! with painful hands and feet !! - the mental challenge being put to its limits at this time !! I have to just focus on one day at a time and look forward to making the most of the summer!

It is the longest day today and the British weather is living up to its reputation so the flip flops have returned to the bottom of the wardrobe and the eskimo look is back on - and thats just to sit in !!

I also find that a warm bath helps 'warm me up' and reduces the stiffness marginally !

adious amigas :) x

Ladyscar profile image
Ladyscar

I wish I could move to warmer climates too. The problem with the government etc., is that do not realise that Raynaud's is a painful and sometimes more painful when the warmth is finally getting back into your fingers. They never push for those is social housing to have better heating systems in their homes so that they can function a lot better and leave the place and go out and work. The amount of times I have just walked into shops pretending I am looking for something just to keep warm. My hands are the worst and even typing is painful. This year I have suffered so much and there have been days when I have been able to wear shorts and have worn gloves with my t-shirt on. As I also now have thermal urticaria so I have to freeze and boil in the to keep the itching at bay and my hands warm at the same time. Aye carumbah!!! More sun yes.

Coldfeet profile image
Coldfeet

Well I had to smile reading this as here I am typing this with the fleecy leggings under the trousers, plus thick socks and sheepskin boots on! The only concessions are that the boots are ankle legth rather than mid calf or knee length, and I am at least down to one layer of leg underwear (sometimes its 3). My feet get exposed regularly once a year if I go to the beach in August (and then they sunburn easily as they so rarely see daylight. let alone sunlight!!).

But actually I really like the ambient temperature just now, I'm aware of just generally being able to relax more easily, a bit of respite from the usual constant battle with conserving body heat, without it being too hot!

welcome to our world, hey, coldfeet ?? thanks for making me smile also, as I have been back in the Uggs since writing the post ! that will teach me for getting excited about losing the boots haha ! and during the 24 hours of rain and wind, I have been back in hibernation for a few days !

I am glad that the warmer temperature pleases you also ! wehoo let the sun shine haha :)

Ladyscar - do yo use handwarmers ? I have a microwaveable one which I use all of the time ! I could not do with out it as even when the temperature can be warm for others, my fingers will start to change colour and I then have seconds before all sensation goes, and of course when the circulation returns it is a most unpleasant painful experience so it has taken me a few years, admittedly, to work on the prevention is better than cure approach !

I lived on the island of Fuerteventura for 5 months 9 years ago, and the warmer temperature definitely improved my symptoms but I still got the attacks and of course the air con was a nightmare !! :)

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