Just something i made up in my head and thought i would share it with you guys. 'If only poeple understood'

* others look out the window and think 'wow it looks cold out there' - we look out the window and think ' right i need the ski kit on today, and i still know it will be a painful day'.

* other open the freezer and think 'what am i going to have for dinner today' - we open the freezer already planning exactly what we are going to fish out and think 'its so bloody hard to get these peas out with the oven gloves on, now i have gone and dropped the draw'

* Other people get out of the shower and think ' what shall i wear today' - we get out of the shower and think ' quick get the three towls and dressing gown on then dry and dress as fast as possible to remain a constant temprature'

* other people go to the supermarket and think ' organic sausages or farmers sausages' - we go to the supermarket and think ' ready steady go go go go grab and run with the ski gloves that mean we will end up dropping stuff'

* other people think ' yes its summer' - we think ' at last some small relief although there is still the constant battle with air conditioning and other temprate changes'

* others get out of the swimming pool and casually go for a shower - we get out of the swimming pool and try our best to hide our smurf like hands and feet as we dont want others to notice we have turned a strange shade of white or blue.

* other people think ' what a weirdo wearing ski gloves its only october' or ' dont you realise its summer you dont need gloves' - we think ' if only people understood, raynauds is not a life threatening condition or anything at all like that but it is really annoying and effects almost everything we do either consiousally or unconsciousally, we dont want people to feel sorry for us or treat us any differently at all, but a little bit of understanding would go a long way'

18 Replies

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  • Well put Kaz It would be nice if they did, but they won't as it isn't something that is well publicised or obvious to the eye. For the most part I find people think I am putting it on, or just being lazy when I am to tired to go somewhere. And they say they understand my condition but if I have to cancel last minute or close to it because of some flare up or other, they are always disapointed and don't hide it. I get so tired of the 'Oh you cant go again' from people that claim to understand my condition. Clueless is what they are and for me personally it just adds to my stress as then I feel guilty for not being able to do things that I have no control over.

  • I can sooooo relate to this ! I was described as being 'awkward' on Christmas day last year when I refused to go out in the snow ! So I spent the day on my own, until early evening when my family brought me my Christmas dinner on a plate after they had all had theirs ! I used to have a lot of friends, or so I thought... until I became unreliable and weather dependant! But thats ok - i can please MYself and 'what other people think of me is their business, and none of my business' ! - as by what Dr Wayner Dyer has told me when I have been listening to his inspirational talks on the internet whilst listening to the wind and rain outside !

    I am now very reluctant to make arrangements as I spent years of forcing myself to go out and then regretting going as I would just want to come home straight away as I would be cold or could not stand or sit for long and then the next day I would feel even worse ! So I now I just row my boat gently down the stream (another Dr Dyer saying) taking each day as it comes !

    AND Kaz - yes, very well put !

  • If I could add one word of encouragement, it does get easier over time! I've had Raynaud's (and scleroderma and sjogrens) for over 10 years and all of my friends are very understanding. People at my church just laugh and kid me about wearing gloves all of the time. If I'm too tired to do things--and I'm like uknlv, I get very tired--I don't worry about what people say. I've learned to take care of myself, and my husband takes care of me too by being understanding. Your words are very good and it does help to write out what we are thinking and going through, doesn't it? Keep wearing those gloves!!!

  • How very true your comments are, but keeping a sense of humour I find helps.

    My biggest hate is when I have a sprain or pulled ligament and kind, caring friends suggest an icepack, the thought makes me shiver and run to the nearest heat sourse! Nasus.

  • Think about it Kaz 321, The way you have described it would make a very funny cartoon. Humour is important. If you are a good drawer, draw it and send it to the RSA. As far as possible I never cancel anything I have committed myself to do. It would only bring negative attention to me. I don't want people I care about too think me deficient. I am as I am. I no longer worry if I look smurffy or not. Why should I, people pass me by for a second and then there no consequences, they don't know me; I don't know them. So why should I care. I care about my friends and family.

    I read in a book "The Wrong Boy" by Willy Russel, when the poor ten year old felt that everyone looked at him and didn't like him, he got fed up and went to his old gran. She listened to him then she said: "Self Pity never peeled potatoes." In other words it's useless.

    Draw your cartoon and make us all laugh.

    Love.

  • BRAVO..... BRAVO.... (standing while applauding) I love this little poetic truth. I also have scleroderma and the temperatures effect me way more than anyone could know, especially when my skin is inflamed and feverish like..... Bravo. You should publish this at least locally.

  • It is so true, freezers, showers, rainy days, breezy days, getting into bed with freezing toes and hands ... it gets painful over time...and then we say 'oh i need to soak in a hot tub for some relief' I am a physiologist, looking for some answers on core issues. The medical world doesn't give this condition much consideration in my opinion probably because there is no residual income associated; that sounds mean but it isn't they have to make a living too. Unfortunately, for Raynauds victims the world is still flat. Stay warm my friends, ColdToes

  • Too true kaz 321, you should publish it. u need a sense of humour with a condition like raynaud's. you either get people who understand raynaud's or they totally look at you gone out. i.e it's warm out why are wearing a coat or / and gloves.

  • Im pleased it made people smile - making things into a bit of a joke is just the way i am.

  • Reading this made my day....knowing laughter is the best medicine one thing when suffering thats the last you have time for thank you for the smile

  • So glad that you shared those thoughts. I have a couple of nick names. The Glove Lady or the Eskimo Lady. I just laugh and say if you only knew. I don't worry about being looked at strangely anymore. I wear my gloves year round. July, August. If asked why , explain and move on.

  • I agree with the above but would like to add how hard it is to also cope with Eurothromelgia as this is the same as above but triggered by heat. I try to have sense of humour but your right alot of people do not understand.

  • I couldn't agree more, if I had a dime for every time someone made a comment about me wearing gloves in warmer weather I'd be a rich woman. I used to just shy away from the comments but now I just look the person in the face and say" I have raynauds ...why don't you educate yourself and google it" that usually gets a red face :)

  • for the last couple of years i have used a fan chewed gum to get moisture and had window open to cope with and prevent the erythromelgia attacks but now since my op nothing works and people always ask are you hot when I have fan on i now get flare ups from raynaulds hot and cold ah!!!!and then it riggers the menopause help!!!!!!!!!!!!!!!!!

  • I have had scleroderma, raynauds and poly myositis for 36 years. I must be one of the luckiest people in the world. My friends from the very start of my getting these diseases have been sooo understanding. I think that is because right from the start I explained to them just how I felt. My friends and I had planned a trip to Toronto and right before we were to leave I had a disease related problem with my foot. I had to have a cast put on it and I told my friends that I did not want to go because I would slow they down doing everything. They said "no way we are going without you" so when we got to Toronto they put me in a wheel chair and pushed me all around the shopping mall and we even went to see "The Phantom of the Opera" I think what we have to do is sit our friends down and explain to them just how these diseases affect us. If they are your true friends they will never say "what, you can't go again".. I have had to cancel many events through out the years. I also have problems with the hot flashes. I have tried everything. I can't take any hormones because I had a slight stroke 2 years ago. when I sweat really bad I just fan myself and tell the other people that are around me that I am having a hot flash so bare with me..haha

  • Other people order a cold drink while we avoid ordering pop-corn and coca-cola at the cinema except someone else carry the iced paper cup..

  • This is brilliant and so true! :D

    Thank you for posting that.

  • Brilliant, I remember getting told off by a real snobby woman in the supermarket because I had a trolley instead of basket with 5 things in it and went to the short check out line. She made such a fuss about it and I turned to her and said if I could carry a basket I would, my hands just can't grip the handles in the cold!. She did think I was kidding her but I just carried on and she became more and more frustrated, I just smiled to myself..

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