It’s still so weird looking at old photos of myself. The only bonus to having this disease is the involuntary free facelift. First my nose shrunk then my lips changed and who knew I had cheekbones!
The rest of it sucks.
Looking well but being ill is a battle!
All the photos in this post are me at different stages. The first photos on the cover are taken from my passport 10 years apart at 18 and 28. The bottom left at 14/15 and the bottom right at 20.
The only thing I miss from these times is the ability to breathe.
Mmm a big deep breath in is my fantasy…
‘Cough cough splutter’ – No, it’s still not happening. I would sigh, but, that too is futile.
The amount of times I’ve been asked if I’d had ‘work done’ or for the name of my surgeon. In my head I’m like really? So if I reply it’s usually something short and straight to the point.
It’s Scleroderma and I’d gladly swap your life for mine.
Always said with a smile and always completely serious.
Take it! Take it all! It’s ruined me and continues to eat me alive. No mercy. No break just ‘chomp chomp chomp’ on my juicy frame whilst I fight, fight, fight.
Fight against society to try and fit in
Fight against its crippling trademark
Fight against an inevitable death
It’s all a battle. Every damn day.
So much swirls around my mind and I can’t even go for a walk to air my brain. How can I carry so much in my head but not carry my own physical weight to a park?! I just can’t absorb it so I keep trying and the more I try the more frustrated and disappointed I get.
“It’s just walking!!” I’d scold myself
“You can’t even do that!!”
Cue the bad thoughts.
Cue the depression.
Fighting for breath is just terrible. I’m being consumed by frustration.
You dream of winning the lottery.
I dream of new lungs.
The odds, sadly, are probably the same…