Invisible condition

Hiya just had some thoughts, these are the following:

We don't just to have to deal with condition/s we have we also have to deal with -

People's ignorance for example why you wearing gloves in this weather

The health service for example when I was diagnosed with raynauds about five years ago all I was told was that I had raynauds - not how to cope with it

The dreaded air conditioning

Medications - side effects other meds you can't take with it.

This has been my grumble.

Some of what I have learnt, layers lots of them, hat and scarf are a must this time of year, mittens are better than gloves, I got a good pair from Dorothy Perkins faux sheep skin my hands are so snug, scarf inside is also a good idea. Any other ideas people have acquired would be most useful, thank you

7 Replies

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  • Hi

    I know exactly where you are coming from. My work colleages have got used to me now looking like an eskimo when I come into work.

    Several years back however different story - and it has been and still is a hard slog to try and get people to understand.

    M&S have a new range of heat generating clothes and they are fab. Layering is still the best all round.

    I have some thin gloves with silver in that I can wear whilst at work.

    Medication interaction what a nightmare I have had - too long a story but its worth sticking with the meds for raynauds and finding something else to solve the other problem.

    Good luck, keep warm

    x

  • Every time you explain our condition to people you improve out lot. Ours is a rare disease and that is why it is so poorly known. But the RSA do their best, we should play our role too.

  • The RSA has loads of information and free literature on coping with Raynaud's. Visit raynauds.org.uk or call 01270 872776 and ask to speak to Anne

  • Another comment from me

    I often get asked - Are you cold?

    As they notice that I am wearing a thick jumper indoors, or three coats outside (thin fleece, thick fleece, anorak)

    My curt reply is

    NO, I AM LOVELY AND WARM

    AND DESPITE MY CONDITION

    I INTEND TO STAY THAT WAY

  • I get the strange looks too. But mine is because I wear UGG boots in the office, even during the summer months. My feet are always so cold, yet the rest of my body can be fine. And my hands are not affected too badly at all, but my nose is:)

    Kathy

  • Has anyone had their tongue turn white on the tip & go numb? And I swear my mouth is getting smaller..

  • Hi, I'm still getting used to this sight and just notice your comment nanadx, yes I also noticed this about my mouth getting smaller, it makes it rather difficult for my dentist to get in there, this is too do with sclerederma I've been told.

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