Young, Sick and Invisible

My illness has shaped me,
But it does not define me.

How cold are you ..?

Frozen Field

I went around Facebook asking those who are diagnosed with raynauds if they could describe what day to day life is like. I hope that those who don't know what raynauds is, or didn't know what it was like, get an inkling into our lives:

Sarah Anderson: I think I wake up every morning and need to make the decision to be as productive as I can. I do this because I need to feel that I have some degree of control over my condition... I have lived with my raynauds since I was 3; I refuse to let it stop me getting what I want out of my life. I now live with fibromyalgia, premature menopause and lupus. I work part time and have pets that mean even if I want to hide under a blanket, it is not an option for me. This is really helpful because I have a general positive outlook on my life. The struggle and fight I have inside me is largely hidden from everyone else. Recently I was turned down for PIP having been awarded DLA at 17 for life. In the report it was said that I look fit, bright and healthy- we obviously have a way to go still with disability awareness. But I refuse to become a victim of my health in order to be noticed by them. So I guess I need to find a way to be noticed by them that does not make me feel that I have to perform for them - and instead stay true to me.

Tammy Church: The thing I did not realize and you dont hear alot about is it can affect more than just your hands and feet. Your face(nose) and other parts of your body can also be affected. It is hard to be comfortable when you have other conditions as well(menopause) your core is sweating and everything else turns white. There is just so much more than most realize with raynauds.

Stephanie Kupfer: Even in the heat of summer, my hands are freezing. I can't hold a cold can of coke without it triggering an episode. I always carry heat packs with me or run hot water over my hands until I have feeling in my fingers again. My nose and lips also get cold.

Audrey Van Wyk: Raynaud’s is our first indicator of an autoimmune issue taking hold in our bodies. For me, it effected my hands turning them from natural color to white and then purple and back again for what seemed like no apparent reason. The intensity of pain, almost as if the fingers were being quickly frozen and then thawed, increased with the color change and what that meant was my body felt cold and the blood vessels in my hands restricted and stopped blood flow. The immediate answer is keep your core warm even when I didn’t feel cold; I always had a sweater on; ordered hot cups of water in a restaurant to hold; sat on a heated car seat when in house; use a foot of bed heating mat to be able to sleep. While walking down the street a woman behind me was screaming as she ran toward me...”there’s something wrong...there’s something wrong your hands are dark purple”. I haven’t had one incident in two years, so there is hope. Raynaud’s is our bodies way of saying something’s wrong and it’s that we are eating food (yes diet) that our body finds it can’t tolerate. Research shows that we are either celiac or gluten intolerant and when eating inflammatory foods, our bodies fight with an immune response...battling itself and that turns to leaky gut then autoimmune disease. I am 100% wheat, rye and barley (beer) free including hidden things like licorice, bouillon, gravy, OTC supplements, soy sauce, etc. Stop yourself from developing additional diseases, read and see YouTube videos by Functional Medicine doctors Obryan and Osborne... leaky gut, gluten intolerance or autoimmune diseases.

Joely Brannan: I was born and raised in Georgia. And traveled to Alaska where very quickly i became aware of my E.T. looking fingers. It didnt take long for me to figure out what was happening, but in a very short period of time i went from not having a clue i had this "Phenomenon" to being fully aware of the new hell on earth i seemed to have located. It was so cold and my hands hurt so bad i would scream as if being tortured. I literally thought the last month i was there i may actually die from literally freezing to death or from the pain associated with neuropathy i developed due to Raynauds Phenomenon.

Raynauds Flare

Mary Quigley: The pain I experience while I have an "attack" is best described as this. Please hand me a hammer so I can bash my fingers (and sometimes toes) with it, because that pain in my hand would be a relief to the pain and spasms I am currently feeling.

Naomi Ashton: Think the worst thing for me is not being able to build snowmen with the kids in winter. Also one of my most intense memories was after going sledding with my boys and my feet and hands had gone numb to the pain but on getting back to the car and the “thawing out” bit was agony. Also only being able to do so much food shopping once I hit the fridge part my hands turn blue go numb and then I feel freezing everywhere! I was on holiday not so long ago in Ibiza I went for a dip in the sea and the sea was quite warm, I got out to blue hands 🙈🤣. The joys of being the weird one amongst friends 🤣. Also going to the check out with blue hands can be embarrassing as the check out lady/man has given me some funny looks once spotting these really dark blue/white hands. I’ve also had people comment that I have ink stains on my hands 🤣 x

Annie Briggs: I've had Raynauds for my whole life I think. I thought it was normal till I couldn't walk much and my toes stayed numb and started shrinking. Ive always been an avid walker. Now I'm scared. I am getting meds soon but I am so hyper sensitive to meds that I'm just hoping it will be ok.

I hope that this helps sum up what people thought about Raynauds, it is not just about being cold, there is so much more beneath the surface that we have to fight, then there is on the surface.

Until next Monday,

Bethany S.

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