I joined Instagram only a couple of months ago and when I asked around my Zebra community if anyone else has it so that I could follow them, one of the girls replied that yes she did, but added in a rather snappish way that I mustn’t expect her to follow me back, as she doesn’t want her illness to be the only thing in her life. I thought that that was a very valid point, and while I thought that she could have phrased it in a little less hostile way, I thought well good for her, …and looked forward to seeing what else she did, hoping that it would be inspiring. But after following her for a week I unfollowed her. Yes her EDS was only a small portion of her pics, but the bulk of the rest were nothing but selfies on the beach with her dog. She has beautiful blonde hair, a cute dog, and lives near a stunning beach, but for someone who was so blunt and a little forceful about having so much more in her life than her illness, I truly hope that there is more to her life than her hair, dog and beach. (I do, I’m not being mean, I hope that there is more).
I posted the other day about makeup and my lack of it and why, but I didn’t mention my lack of “fashion” either. For the same reasons as my lack of makeup and facials etc, there is also my lack of “fashion sense”. So when Spoonies blog about make up and hair and fashion and those kinds of things, it doesn’t interest me at all. … that is until two things happened:
The first was that a lady put up a selfie of herself ready to go out for a rare special evening. I couldn’t help but feel joy for her that she was getting the opportunity to feel special and get out from her home for a few hours. I rooted for her that evening hoping and praying that her POTS didn’t rob her of any of this! Wanting to feel normal is such an important need when our lives become so limited and I need to be massively aware that for each of us that means different things, and popping on some lippy is a good things when it brightens our evening.
The second was a lady who I came across who blogs about spoonie fashion. Really?? ..yup.. so I read further… have you any idea how boring and “ugly” most compression stockings, “comfy” shoes, and so on are? Not to mention that they often come in a colour that is nothing like the skin on any human being that I have ever seen! Do you know that people in pain of all kinds (like myself) need elastic pants with no buttons, room to expand and contract and aren’t creased or tight enough to pinch skin and cut off blood supply? If we listened to our bodies (and the specialists) only, most of us would spend most of our time in ugly pyjamas!
I have learnt to be totally fine with that and I often make my own clothes anyway as I have never fit into any “normal” boxes from the start, …and because without knowing it I needed to be comfortable all the time, so I have always made a plan. But not everyone has the desire, skills or energy to sew, knit and so on, so when I started seeing these posts on makeup and fashion through my spoonie eyes, I am LOVING that people are sharing what they are wearing, where to find things that fit, don’t hurt, tips on how to “fix” things to make them work, and where to buy things like compression stockings that aren’t Barbie Doll skin tone.
…and if all that long-hair -beach-girl can manage outside of her bed is to go for a walk on the beach with her dog each day, then good for her!! (not that I will be re-following her, … there are waaaay too many AMAZING inspiring spoonies out there to watch and cheer on and be inspired by!)