Smiling Clare

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.

I’ve been umming and ahhhhing over whether to share this or not but I think honesty is the best policy. I’m not sharing this for sympathy or pity, it is what it is; a part of my life, and something I have to deal with.

I’ve been in a really bad mindset recently. A place where everything seems too difficult, it feels like everything is against you. A number of viruses, a decline in physical health and reduced cognitive ability really have taken their toll on my state of mind. I’ve questioned almost every aspect of my life; what I’m doing, why I’m doing it, if there’s any point to it.

I’ve been chronically ill for 11 years now, that’s 11 years dreaming of being well, able to lead something close to a normal life. I’ve come close to that a few times but each time relapses wrecked those dreams. In the midst of yet another ‘blip’, which I’m hoping against hope won’t turn into another of those relapses, I’ve been finding it difficult to see a light at the end of the tunnel. Yet I’ve been worse.

It’s like these years of having my hopes of recovery dashed by relapses have taken their toll and I can no longer dare to dream of that. As a result it’s been incredibly difficult to focus on the positives, of which there are still many, I look to the future and all I see is illness. I’m approaching the end of my degree and not only do I have no idea what I want to do with my life but I don’t know if getting a job and working is actually a possibility. I also know I can’t rely on my parents for everything indefinitely. I need some form of income and support.

The future looks fraught with difficulties such as that and I don’t know if I’ve got the fight in me to keep going. I’m exhausted in every sense of the word. I look around and see people my age moving in together, getting married, moving up the career ladder and so on: then there’s me. Trying like mad to finish my degree and recover enough to be able to consider getting a job. Relying on my parents and family in general not just financially but for care; help doing the most basic of tasks.

I’d like to say it’s just a bad day not a bad life, in fact I did think that when this current patch of poor health started at the beginning of the year but as my health has continued to decline and that bad day has become a bad week, then a bad month it’s getting harder and harder to keep believing that this too will pass.

Coping with a decline in health on it’s own is difficult enough but I’ve also started the most challenging module of my degree thus far. I’m ashamed to admit I have actually considered quitting. But I’m not going to do that, I’ve got to at least try and finish what I started in 2010. The road has never been easy and the next few months look very daunting but I’ve got to give it a go. Otherwise that’ll be one more dream dashed.

To those of you who’ve been there supporting me these past few weeks, thank you. I am slowly getting myself back into a more positive mindset but it’s going to take some time. I’ve not given up all hope by any stretch of the imagination but I am finding things tough. As things slowly start improving again and the recovery process begins I hope I’ll get back to my usual more optimistic self!