I’ve been absolutely swamped with work this week, but I still wanted to blog, so I decided to do the Chronic Illness Tag, just to summarise some of my thoughts.
What is your diagnosis?
Provisional diagnosis of PoTS, waiting for more tests to confirm
What has been the hardest part of being a spoonie?
Restructuring my ambitions to fit within my limitations. I never want to let my condition get the better of me, but I’ve had to accept that some of the things I want to do just aren’t feasible, at least until I can manage my symptoms better
What have you learnt?
You can work around everything. Things may be difficult the way you used to do them, find a new way, ask for help. It may not be as easy as it once was, but you can still reach your goals.
What are your thoughts on the spoonie community?
I have been AMAZED by how lovely and supportive the spoonie community are. Special shout out to The Pillow Fort (LINK) who are an amazing and supportive bunch of people.
What distraction tools do you use?
Reading, films, crafty stuff, comfort shopping.
What is your support system like?
My GP is really supportive, if slightly unaware of PoTS, and my friends are amazing, but again I have to say the online community I’ve discovered have to be the best, they just get it.
What do you miss?
What stigmas do you wish you could change?
That it’s all in our head. That we’re lazy. That we’re scroungers. That we’re being negative. That there’s a cure.
What would you like a “normal” person to know about chronic illness.
We’re normal too. We just have a bit extra on the side. Yes we know how to manage it, and yes we’ve tried the treatment that your brother’s girlfriend’s cat’s next door neighbour has tried.
Name 5 things spoonie related you couldn’t live without.
Ready meals, dry shampoo, wheat bags, comfy cushions, lying down.
What triggers your flares?
Lack of sleep, not being able to lie down, dehydration.
What’s your social life like? Has it changed?
I’m not afraid to say no anymore. I used to push myself to go out, even when I was exhausted, because I didn’t want my friends to think I was ignoring them. Now I know they understand, I can say no, or rearrange to an activity that’s easier for me.
How has being sick changed you?
Ironically, it’s made me healthier. I’m now paying a lot more attention to my body, managing what I eat and drink, and generally keeping track of my health. I’ve also discussed how it’s changed me here and here.
Have you made spoonie friends?
Spoonie acquaintances, who hopefully will turn into spoonie friends!
What’re the blessings of being a spoonie?
You learn how much you should appreciate the good times, coffee with friends or a quick walk can be a life saver.