Living with a disability is tough. You only have to ask the brave writers who have been posting their personal stories on the site to see that. Yesterday, Ali shared her story about the struggles disabled people face on public transport.
Now it’s Eve’s turn.
Before, we share Eve’s story with you, we wanted to talk a little bit about why we’re asking young people to write about their disabilities on Maximum Pop!
We recently read Penny Joelson’s new YA novel, ‘I Have No Secrets’, which follows the life of Jemma, a 14-year-old girl with severe cerebral palsy.
After hearing how Jemma was treated in the book, it encouraged us to reach out to those of you who have a disability in real-life. Take Eve, for instance. She was an incredibly sporty child until she was diagnosed with Fibromyalgia.
It’s a condition that causes pain all-over your body and can drastically affect things like movement. But, because it’s an ‘invisible’ illness people don’t quite understand how it could be considered a disability. Here’s what Eve has to say about it.
My disability story…
I never expected to be living my life with a condition that no one in my family had ever heard of. I was a healthy child with no ailments that affected me day in day out and loved to run, play cricket and go on my bike.
When I turned fifteen however, I tore a muscle in my lower back, which is a common pain area for everyone who suffers back pain. Yet it never left me – the pain developed worse over months and then years. After MRI scans and bloodwork taken every year, till this day, the doctors have told me my mystery pain is caused by Fibromyalgia.
Now, it causes me issues with migraines, insomnia, bladder and walking. Sometimes I need to use a walking stick and sitting is excruciatingly painful – stretching where the pain first occurred. Yoga and acupuncture haven’t helped but hot water bottles do. The only problem being that they have left my skin scarred from them having to be so hot.
No one can see the pain or completely understand the anxiety I feel explaining it to someone new – whether it be it a stranger or a professional in hospital.
In college, teachers had to give me a pass to leave class, so I could walk around to stretch my muscle when I got too stiff. Oh and don’t get me started on the amount of times I could only attend for half days because the pain would be so distracting to the point where I would be in frustrated tears. I’d be dreaming of how life could be for me and how I felt so lost being the only person I knew with this oddly named condition.
That’s why the internet has become a great comfort for me. Through blogs and YouTube, in this modern day, I’ve managed to connect with other people who are suffering and we could sympathise with each other over our luck.
Sure, most people with Fibromyalgia are older. A lot of them being 30+ mostly. But, there are some of us who are younger that have Fibromyalgia or ME/Chronic fatigue syndrome, which also exists with the condition.
I was going to study sport and become a personal trainer, that was my goal. Now, my goal has been stalled (not stopped as I have studied Nutrition and looked into how foods and drink can exacerbate the effects we feel from Fibromyalgia) but stalled.
It has, however, allowed me the chance to realise that we get weak with our muscle pain or loss. In some cases, this is due to the extent of our illness and when my physiotherapist tried me out using my bodyweight to regain my lost strength, I realised I could help others and be a chronic pain personal trainer. I could help disabled individuals become mores able and help their mindset and health as positively as studying Nutrition has helped mine.
With Fibromyalgia, one day may be spent in bed or in the house, unable to face the day, but on others we blend in to the world. We go outside and can explore or go shopping and look just fine. Fibromyalgia can try to control us but regaining a sense of purpose can set our goals into work and to reprogram us, as opposed to just focus on our pain/energy levels.
I hope this can help raise awareness of the chronic pain condition Fibromyalgia.