It’s taken a little time but I think I’m finally getting to grips with the different perspectives associated with this disability, and all the medical stuff to go with it.
When I was first told “but you look so well” I was flattered in all honesty…. a few months on, it was getting a bit tougher. Not that I don’t appreciate flattery and I guess with putting on a little weight (no exercise!) and taking care of yourself getting tougher – I expect a lot of people are genuinely surprised that I look OK (no skirt tucked in my knickers etc.). And for the couple of friends that really do ‘get it’ but still say “but really, you look amazing” - I love you so much and I’ll cope!
Probably the best bit for me, is that I think I still look ok when I go out (despite getting very lazy with upkeep!). My hair is extremely long and that’s working for me right now because I only have to make an effort with it when I wash it, so every 5-7 days. In between, I have to brush it and occasionally tie it in a pony-tail. The hair-wash would be tough if more frequent - I need to keep my elbows touching the wall so I don’t fall over when I shut my eyes. I once fell out backwards thru the shower door, that’s not a mistake I fancy making again.
I’ve learnt to be very patient with mascara, it’s worth it. I frequently smudge it but it’s nothing that can’t be tidied with a cotton bud. Mascara if the only make-up I bother with regularly. With good mascara and a quick ‘almost lipstick’ swipe from Clinique and I’m done. If I’m making the effort, then Bare Minerals make-up is so easy and I can successfully do foundation/blush etc. even without a mirror! I’ve also learnt to be really patient with a few other things, if you know me you’ll know I am NOT a patient person by nature.
One of my good pole buddies, we practiced together often, she used to laughingly say I was “strong like bull” which isn’t that silly if you cope with the pain and bruises, yet you still go back for more when you’re taking lessons. The fact I’ve been described as like a “warrior” for taking part in this medical trial, makes me giggly/silly happy in much the same way. It felt like a pat on the back in the same kind of way *grins like idiot*
On the flip-side, when I signed up for the trial, the doctor shook my hand twice – ok, I get it and I’ll move onto brave.
I’ve been told I’m brave but it’s not my choice to have this rotten disease, so brave is the wrong word. Handling things “gracefully” is what one friend said, that seems to be a fair view in my book. Despite wanting to have a temper-tantrum every now and then, I don’t, simple. I still remember temper-tantrums didn’t really work, my Nan still went home despite me lying on the floor and kicking the front door. I’m a “reasonable” adult now and so, I cope.
That’s not to say I don’t stress, trust me I do. I will never really know with any kind of certainty what tomorrow will bring and that’s why I feel that hope is a necessity, simplez!
Now, what did I forget? I’m not going to even start on disabled parking, benefits and the like, as I could be here all day! So, let’s hope my mental strength can at least match up in some way to the physical strength I had. And I’ve renamed this as 1 as no doubt there’s more to come.