A little while back I wrote the post “50 things you don’t know about me” but barely mentioned perhaps the biggest thing in my life, my chronic illness, so I thought that it was about time that I did a more specialised version…
1. The illness I suffer from is a complicated business because it’s such a jigsaw of so many different things but essentially I suffer from debilitating chronic pain, the majority of which is in my coccyx (or tailbone).
2. I’ve experienced symptoms since June 2011- so quite a while!
3. The biggest thing that I’ve learnt is never to say no to something just because it scares you, you don’t know when you may regret it, so say yes to every opportunity that comes your way!
4. The most frustrating thing about being ill is not being able to do the simple things, like bend down to pick something up, the things you don’t even clock doing when well. I often wish I could be like Matilda and pick things up with my eyes- although that may be too much to ask.
5. The thing I miss the most is being around my friends and family in a normal teenage way- it’s very peculiar to only really see people from your living room.
6. Living with a chronic illness is very difficult to understand, and unless you’ve suffered one I would probably be annoyed if you tried to say you ‘know exactly how it feels’, but the best way I’ve found of explaining it is with the spoon theory which you can read on Christine Miserandino’s blog Butyoudon’tlooksick.
7. The hardest question to be asked is– how are you? This may seem a strange thing to say but for me it’s such a hard question because a lot of the time I don’t know the answer myself which is why in response you’ll probably get a “fine” or “alright”. An easier one for me is “What kind of day are you having?” then I can give an answer about what I’ve done in the day.
8. The things I couldn’t live without are my hot water bottle which has put in a lot of good service and my, fondly named coccyx cushion, Aaron. But truly I couldn’t live without my mum, she’s wonderful!
9. The biggest adjustment I had to make was listening to my body and learning that gritting your teeth and bearing it isn’t always possible.
10. Most people assume that I’m the same everyday but this isn’t the case. In fact my condition is incredibly changeable, I can be much worse on an afternoon than I have been that morning.
11. Regarding school work I try. I do a little everyday lying on my side- it helps keep me sane.
12. A new thing that I’ve taken up since being ill is this little blog, in a funny way it’s my illness that’s given me the confidence just to give it a go. And I’m very glad I did.
13. My favourite motto is ‘A diamond is just a piece of coal that has handled stress extremely well’ cheesy but true!
14. I love it when someone just sends me a little text, the smallest thing can brighten my day.
Other similar posts:
~ “30 Things About My Invisible Illness You May Not Know” by But You Don’t Look Sick
~ “A letter to people without chronic pain” – by Cherokee Billie’s Blog