My name is Leah Cullen, im 19 and i live in the North East of England with my mam, dad, older brother Macauley ,older sister Chloe and our 2 pets, Charlie the dog and Daisy the cat. My family are my world and my absolute rocks, when i dont think i can, i get up and fight for them.
My journey began in 2013, I was 13 hanging out with some friends when i went down a slide to fast and banged the bottom of my bum. I even said to my friends at the time ‘I think I’ve just broke my bum’. As you can probably tell this was my inspiration for the name of my blog. The pain was so intense i had to be carried from the slide. Over the weeks that followed, instead of easing, the pain worsened and spread down my leg. It reached the point where I wasn’t actually walking on my left leg, i was dragging it. After weeks of trying to convince the doctors it was more than me just being a dramatic teenager i was finally referred for an M.R.I, for suspected arthritis.
However, they actually found that I had 2 Ependymomas on my spine. In other words cancer. Nothing in this world can prepare you to hear those words but especially at 13 when i was expecting to hear you have arthritis.In an instant, with 1 word my whole life was ripped apart and although me and my family have tried to slowly put all the pieces back together, myself and my life has never and will never be the same again.
I had a 10 hour operation to remove the tumours followed by six weeks of radiotherapy. As if that wasn’t enough, the tumours had been pressing on my nerves for sometime causing serious damage which was then inflamed and worsened by the radiotherapy. This caused chronic nerve pain and consequently left me in a wheelchair and needing a stairlift. We thought this would all be temporary, i genuinely thought that after my treatment my life would return to normal but it never did. The damage is just too severe and my nerves still haven’t recovered 6 years later.In a matter of weeks I went from being a happy,healthy teen who loved playing netball and running to being disabled, isolated, needing a wheelchair, stairlift and in constant excruciating pain. And to make matters worse because I don’t use my muscles enough I now have shortening of the nerves and muscles in my legs causing even more pain and making it even harder to walk. The best way to describe nerve pain is, it feels very sharp like bolts of lightning shooting up my legs.I think a big misconception with chronic pain is that it only hurts to move, this isn't the case I am never not in pain. When I'm lying down, Im still in pain and when i try and sleep i get woken up constantly with pain. There are no words to adequately describe the torment and the impact that being in constant excruciating pain every second of every day has on my mental health. Having to come to terms with the fact that i could be stuck like this for the rest of my life has been the hardest pill to swallow and something I still haven’t fully accepted. However, I'm lucky enough to have the best family and support system in the world who have been there with me through it all. I owe them everything.
I‘ve had to learn to adjust to my new normal and all the new, harsh realities of being a disabled teenager in todays society. For example,the prejudice and assumptions from strangers. The isolation of not being in school, having no social life and all your friends moving on with their lives and forgetting you. More than that i feel forgotten by the world like somehow i dont matter, I’m not important anymore just because im disabled. I’ve lost count of the amount of shops and places i cant go to because its not wheelchair accessible, l’ve been completely ignored by people or treated like an amusement attraction. I didnt have anyone who i could relate to who could tell me how to cope with people shouting cripple at me, pointing and laughing or asking for a go of my wheelchair. Thankfully my amazing family are there every time to pick me up when Im down always ensuring i feel seen, heard and important.
Thats why i wanted to create this blog, to educate people on the realities of living with a disability and these often invisible illnesses like chronic pain. And to be the person i didn't have, who can relate to and give hope to others is a similar situation and make sure they know they’re not alone. So if i can help one person then it will have been worth it. Thank-you so much for reading and supporting me and my blog
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