In this post I’d like to bring your attention to a fellow spoonie who is in desperate need of a powered wheelchair. Her name is Gemma and she lives with a number of life-limiting chronic illnesses:
- Hypermobility (Ehlers-Danlos Syndrome Type 3) A connective tissue disorder causing weakness and fragility in the whole body; including internal organs and blood vessels. It affects every single joint in the body and for Gemma it causes sprains and dislocations every single day. As a result she’s been through 7 operations to try and help her constant ankle sprains. Years of physiotherapy took it’s toll on her body and she found herself using a wheelchair more and more.
- Chronic Regional Pain Syndrome (CRPS) in her right foot, knees and hips. This causes searing burning pain and loss of function in these limbs to name just a few of the symptoms. There is no cure and little remission from this disease.
- Arthritis. Gemma was diagnosed with this at just 4 months old and as she gets older it is attacking her over-extending joints more and more.
- Chronic Fatigue Syndrome (CFS) also known as Myalgic Encephalomyelitis (M.E.) which if you’re a regular reader of this blog you’ll already know something about! It’s a long-term fluctuating illness with a long list of symptoms which vary from person to person making it difficult to explain just how it affects every aspect of life. Gemma went undiagnosed for 17 years and as a result of pushing through her symptoms during that time she has gone from a healthy happy teenager to being thirty and almost bedbound; she doesn’t leave the house for weeks, or even months at a time.
- Non-Epileptic Attack Disorder (NEAD) these appear the same as epileptic petit-mal seizures but are not caused by electronic impulses in the brain. Consequently they cannot be treated with conventional medication. Gemma can have up to a dozen seizures a day and they are massively affected by how tired she is.
- Migraines. Gemma’s suffered from these for 21 years. These are so much more than just headaches. Migraines have caused Gemma so much pain that at times she’s questioned if she could carry on. They sometimes affect her body the same way as someone having a stroke; Gemma can lose the use of one side of her body and slur her speech.
- Functional Neurological Disorder (FND). Basically an umbrella term for many neurological symptoms which aren’t linked to Gemma’s other conditions. Functional symptoms are thought to derive from the brain’s inability to send and receive signals properly as a result of physical and/or psychological precipitating factors. It’s a debilitating illness with an incredibly wide range of symptoms.
Gemma currently survives with a manual wheelchair however due to a deterioration in her health she can no longer propel herself and as a result the manual wheelchair no longer meets her needs. Following talks with the medical professionals who treat her and an assessment with an occupational therapist it has been suggested that a powered wheelchair is best suited to Gemma’s needs. Yet due to the seizures she experiences every day the NHS wheelchair service has refused to fund a powered wheelchair for her.
Through Cognitive Behavioural Therapy (CBT), a form of treatment Gemma receives, it has been suggested that getting out of the house would be beneficial for her but without a powered wheelchair this just isn’t possible.
There is no known cure for any of the illnesses Gemma suffers from, they are all chronic disabling conditions that she has to live with every day. The combination of all these conditions means Gemma is unable to work and therefore funding a powered wheelchair customised to her needs is impossible without some assistance.
Gemma herself admits she is usually too proud to ask for help, even from her friends and family, but the reality is that she can do very little for herself. From nutrition, washing/dressing, transportation, managing finances, speaking to doctors etc she is reliant on someone else far more than she’d like to be. So creating this gofundme page and letting me blog about it is a big deal for her.
Getting a power wheelchair would at least allow her some independence, initially just around the house, whilst helping with her pain levels. Being able to take her dog for a walk would be pure joy for Gemma, since it’s something she’s been unable to do for years. Gemma’s ultimate goal is getting out there into the world that’s passing her by!
If you’ve taken the time to read this please consider donating to Gemma’s gofundme page, even the smallest donation will help. To help encourage you Gemma is even offering something in return for certain donation amounts:
- £5 gets you a shout out on Instagram and Twitter. You never know you could bag yourself some extra followers!
- £10 gets you a spoon necklace handmade by Gemma in either silver plated or bronze tone. Each necklace is unique due to the beads she has available.
- £17 gets you a 3 piece jewellery set comprising of a necklace, bracelet and earrings in either silver plated or bronze finish.
- £25 gets you a unique 3 piece spoon jewellery set and personalised thank you card handmade by Gemma herself.
- £150 will get you your name or company featured somewhere on Gemma’s wheelchair!!
To almost end this post I shall quote directly from Gemma’s gofundme page:
“If you’re still reading then THANK YOU! Reading about a girl whose life has completely changed isn’t easy, but believe me it’s even harder to live it.
I have heard of the kindness of strangers before, and I can only hope that one day someone will pay-it-forward for me too. I show kindness, compassion, generosity, and selflessness to others, even more so since becoming chronically ill, and I’d like to think I deserve to receive these in return.”
If you can’t afford to donate, don’t worry. However it would be greatly appreciated if you could share either this blog post or just Gemma’s gofundme page in the hope it will reach people who can afford to donate. Thank you so much for reading, sharing and donating! You are all amazing!!
This post has been written with Gemma’s permission by adapting Gemma’s story on her gofundme page.