How to manage two extremes did I hear you say ..? Well, I’m still learning. Let’s use an example, I’m going out to a coffee shop with my mum during winter, like any normal person you’d dress with a thick winter coat, scarf, gloves, woolly socks, and extra layers under your coat. Only if it was this easy … You see I try to dress for winter, trying to prevent chilblains, trying to stay away from the cold pain that Raynauds brings, but its never simple. I’m all ready to go out in my winter outfit, walk outside, then it hits me, not the cold, the heat, the intense burning, feeling like you’ve just come off the plane into a hot dessert. The feeling that I need to take these layers off becomes so extreme, that it feels like you’re collapsing inside them, but then, if I do so ? the feeling like you’re being drowned in snow, fingers start to change colour, become numb, face turns to an icy white, and a whole rounder of not being able to feel anything on your body. Once cold, then what ..? I can’t just warm myself up, I risk getting chilblains, feeling sick from becoming hot too quickly, light headed and overall so very tired. So how then do I warm myself up from cold ..? I don’t, I have to wait till being cold is just about manageable, then a hat, scarf, onesie (only indoors, can’t have my neighbours see me dressed like that) slippers and then gloves.
I hear a lot of people when I tell them about myself say ‘well the cold and hot, they must balance each other out no .? How I wished they did. Or another one I get ‘Must come in handy having EM in winter, bet you don’t feel a thing’ Now its funny you say that, because yes, feel everything, but on the flip side, I was walking around Tesco’s the other day, and was in the fridge section, LADIES AND GENTS I FELT NOTHING, I was graced with having an EM flare, and let me tell you how great it felt, I could touch the yogurts for once without getting icicles hanging of off my fingers!! Although, that’s about the only time I actually felt like having this was a blessing.
Now i just want to share a word of advice (for those who don’t have what I have), if you ever encounter someone who does, don’t laugh, don’t say it must be fun, don’t joke about it, because it does hurt, we have to live with this for the rest of our lives, some with not ever finding medicine that works, and if we do so ..? Have to live with the side effects of extreme fatigue, light-headedness and so much more, not knowing what risks we are putting our body through in the process.
Another thing, what really grinds my gears, ‘You’re too young for this, you look fine …’ Yes, I’ve heard this more then once. Why would anyone in their right mind make this up, I didn’t choose to have this, and if I could return it I so definitely would. Illness doesn’t discriminate age … Its not just this though, its all the stress, the anxiety, the depression that comes with it, the random bursting out in tears, not knowing why, the anxiety about will people shake my hand today while I’m having an EM flare which means my hands will be sweaty. Its stressing about what should I wear to accommodate both extremes, hoping that one doesn’t flare up and make me more anxious, like wearing a winter coat in summer. There’s so much thought for us that goes into every second of the day hoping that someone won’t mention why we are doing this or why we aren’t.
You don’t know who is fighting an invisible battle, whether that be a chronic illness or even a mental illness, take it all into consideration, because the tiniest of hiccups could send them spiraling.
This post is by Shadow’s Edge guest author, Bethany S. who writes the blog Young, Sick, Invisible. Bethany was diagnosed with Raynauds in March 2017, Erythromelalgia in October 2017 as well as low blood pressure a positive ANA and GERD in April 2018.