Sometimes, arthritis is pretty horrible.
Sometimes when I wake up I go to check my phone in the morning and it feels like one of the hardest things in the world, I have to lift up my arm with my shoulder, stretch out my elbow to get to my bedside table and attempt to pick up my phone with my nibbley-knobbly, boney fingers... This tends to feel like nails running down a chalk board or two pieces of Styrofoam screeching together... Which as you can now imagine, is quite painful. It absolutely sucks.
I recently read a very sweet picture story book called 'The worst pain in the world' by Nicky Johnson. This book follows the story of a little girl called Bella. Bella has arthritis, but Bella is having a birthday party and is very excited. On the morning of her much anticipated party she wakes up very stiff and sore and that means she can't go jumping on the bouncy castle. For Bella, missing out on the fun is the worst pain in the world.
While this is extremely accurate and made me cry a little while reading this as I have been in Bella's shoes and know how authentic that pain is... As I have grown up, the worst pain in the world for me has been 'being different'. I've spent my life trying to be as normal as possible and if that means I have to pretend that I'm not in immense pain so I can fit in, so be it.
Having and invisible illness is hard. People don't believe you... I appear to be a young healthy and fit teenager but I'm so not. It's also very confronting. It can show you how judgmental people can be. I remember vividly one day having to walk from school to the local train station in intense pain and getting onto the train and being almost on the verge of tears because the 'disabled' seat was free. So I hobble over to it, dump my bag on the ground next to it and collapse into the welcoming seat. Not one stop later I was asked to vacate my golden chair for an elderly person because I was a, and I quote "Young lass". Being a polite person I collected my full, heavy school bag and went and leaned against the door just hoping for the ground to open up and swallow me... My pain is real. My pain is harrowing. Just because you can't see my pain, doesn't mean it's not there.
Being in pain means that I can't do normal things. Like sports with other kids or sometimes even going shopping with friends is too much... that's probably more upsetting than sports... shopping is my sport :P *Thank you online shopping* but it also means that I can be in too much pain to do important things like get to school or eat.
Recently my current medications which I've now been on for a few years, haven't been working as well... I notice them wearing off before its time for a new injection and that's worrying because it means it's time to look for a new 'wonder' drug and that can and probably will be a LONG and distressing process but its all worth it in the long run so I can have the most normal life possible.
After all of that, do you know what the best benefit in the world is? Having people in your life that are supportive. In that sense, I am the luckiest girl in the world. So a huge shout out to my immediate family, Mum, Dad, Luke and the grandparents who have been my number one fans from the moment I graced the world. Another shout out to my incredible boyfriend, Arnold, who has shown me nothing but love and understanding. And one final shout out to my wonderful friends, particularly Lucy and Sarah who have never doubted me and who have ALWAYS been there. I love you all dearly and there is now way in the world I would be literally standing on my feet without any of you.
xoxo,
Liv
