M.E.? I'm a fighter!
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Hi! My name's Gemma and I live right in the middle of the UK. I suffer from 8 chronic illnesses that limit my everyday life and I've started this account as I'm in desparate need of a powered wheelchair.
Currently I have a manual wheelchair however my health has detiorated to the point that I can't propel myself in it anymore. I've spoken to my GP and neurologist, and had an assesment by my occupational therapist and she agrees that a power wheelchair would be best for me. Let me explain how it even got to this point:
I was born with a joint condition called Hypermobility (also known as Ehlers-Danlos syndrome type 3) which is a connective tissue disorder. Connective tissue provides support in the skin, tendons, ligaments and bones. My condition causes me to have weakness and fragility in my whole body including my internal organs and blood vessels. It affects every single joint in my body and causes dislocations and sprains on an almost daily basis. To try and help my constant ankle sprains I had an ankle fusion in 2008. Unfortunately this wasn't completely successful, and over the next 5 years I had another 6 operations to fuse my ankle, foot and even toe! For each operation I was in a non-weight bearing cast and then aircast boot for up to 6 months following each surgery. Years of physio took it's toll on my body and I found myself using my wheelchair more and more.
After my 3rd ankle fusion surgery I was diagnosed with CRPS (chronic regional pain syndrome) in my right foot, which has now spread to my knees and hips. CRPS causes searing burning pain and loss of function in these limbs, just to name a few of the complications. CRPS is the most painful disease with no cure and little remission.
At 4 months old I was diagnosed with Arthritis and this is attacking my over-extended joints more and more as I get older.
The main condition that I suffer with is CFS (chronic fatigue syndrome,also known as M.E.) which I was only diagnosed with a few years ago but I have actually had for 17 years. CFS is a long-term (chronic) fluctuating illness that causes symptoms affecting many body systems, more commonly the nervous and immune systems. It's hard to sum up all the ways CFS affects my life, but give this or this website a read and you might get a glimpse.
Because I went on for so long without a disgnosis I pushed myself hard studying and working and did irrepairable damage that now affects EVERY aspect of EVERY single day. I went from a happy healthy teenager to being thirty and almost bedbound, not leaving the house for weeks or months at a time.
Next in my list of conditions is NEAD (non-epileptic attack disorder), basically these appear the same as epileptic petit-mal seizures but are not caused by electrical impulses in the brain, and hence can't be treated with conventional medication. I have been having these seizures for 16 years and can have up to a dozen a day. They can (and have) put me in dangerous positions (i.e. almost being hit whilst crossing the road, losing consciousness when having a bath, falling down the stairs) and are affected massively by how tired I am, and with CFS that's basically ALL THE TIME!
Next up are migraines. I've been having these for 21 years. Please let me assure you these are so much more than just a headache. Migraines have casued me so much pain that at times I've questioned if I could carry on. When I was younger they were relatively well controlled by medication but for years now that's no longer the case. Migraine pain is like nothing else I've ever felt, and sometimes they affect my body the same way as someone having a stroke. I can lose the use of one side of my body and slur my speech.
I've recently been diagnosed with FND (functional neurological disorder) which is basically an umbrella term used because I have many neurological symptoms which aren't linked to my 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. Honestly some days these symptoms make my life a misery. I'm still fighting to getback to the 'old me' but increasingly worsening symptoms make this difficult. This condition is yet another illness I suffer with that has no treatment. This website explains FND more.
Please remember that all of these conditions are known as 'chronic'. This means that they will not go away just by taking medication. I will have many, if not all, of these conditions for life. These conditions have left me disabled, unable to work and therefore struggling to fund a powerchair made with the customisations that I need.
I am usually too proud to ask for help, even from my friends and family, but the reality is that I can do very little for myself. From nutrition, washing/dressing, transportation, managing finances, speaking to doctors etc I am reliant on someone else far more than I'd like to be. Getting a power wheelchair would at least allow me initally just to move around the house freely by myself whilst helping with my pain levels. Being able to take my dog for a walk would be pure joy for me, since it's been something I've been unable to do for years. Getting out there into the world that's passing me by is my ultimate goal.
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.
Currently I have a manual wheelchair however my health has detiorated to the point that I can't propel myself in it anymore. I've spoken to my GP and neurologist, and had an assesment by my occupational therapist and she agrees that a power wheelchair would be best for me. Let me explain how it even got to this point:
I was born with a joint condition called Hypermobility (also known as Ehlers-Danlos syndrome type 3) which is a connective tissue disorder. Connective tissue provides support in the skin, tendons, ligaments and bones. My condition causes me to have weakness and fragility in my whole body including my internal organs and blood vessels. It affects every single joint in my body and causes dislocations and sprains on an almost daily basis. To try and help my constant ankle sprains I had an ankle fusion in 2008. Unfortunately this wasn't completely successful, and over the next 5 years I had another 6 operations to fuse my ankle, foot and even toe! For each operation I was in a non-weight bearing cast and then aircast boot for up to 6 months following each surgery. Years of physio took it's toll on my body and I found myself using my wheelchair more and more.
After my 3rd ankle fusion surgery I was diagnosed with CRPS (chronic regional pain syndrome) in my right foot, which has now spread to my knees and hips. CRPS causes searing burning pain and loss of function in these limbs, just to name a few of the complications. CRPS is the most painful disease with no cure and little remission.
At 4 months old I was diagnosed with Arthritis and this is attacking my over-extended joints more and more as I get older.
The main condition that I suffer with is CFS (chronic fatigue syndrome,also known as M.E.) which I was only diagnosed with a few years ago but I have actually had for 17 years. CFS is a long-term (chronic) fluctuating illness that causes symptoms affecting many body systems, more commonly the nervous and immune systems. It's hard to sum up all the ways CFS affects my life, but give this or this website a read and you might get a glimpse.
Because I went on for so long without a disgnosis I pushed myself hard studying and working and did irrepairable damage that now affects EVERY aspect of EVERY single day. I went from a happy healthy teenager to being thirty and almost bedbound, not leaving the house for weeks or months at a time.
Next in my list of conditions is NEAD (non-epileptic attack disorder), basically these appear the same as epileptic petit-mal seizures but are not caused by electrical impulses in the brain, and hence can't be treated with conventional medication. I have been having these seizures for 16 years and can have up to a dozen a day. They can (and have) put me in dangerous positions (i.e. almost being hit whilst crossing the road, losing consciousness when having a bath, falling down the stairs) and are affected massively by how tired I am, and with CFS that's basically ALL THE TIME!
Next up are migraines. I've been having these for 21 years. Please let me assure you these are so much more than just a headache. Migraines have casued me so much pain that at times I've questioned if I could carry on. When I was younger they were relatively well controlled by medication but for years now that's no longer the case. Migraine pain is like nothing else I've ever felt, and sometimes they affect my body the same way as someone having a stroke. I can lose the use of one side of my body and slur my speech.
I've recently been diagnosed with FND (functional neurological disorder) which is basically an umbrella term used because I have many neurological symptoms which aren't linked to my 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. Honestly some days these symptoms make my life a misery. I'm still fighting to getback to the 'old me' but increasingly worsening symptoms make this difficult. This condition is yet another illness I suffer with that has no treatment. This website explains FND more.
Please remember that all of these conditions are known as 'chronic'. This means that they will not go away just by taking medication. I will have many, if not all, of these conditions for life. These conditions have left me disabled, unable to work and therefore struggling to fund a powerchair made with the customisations that I need.
I am usually too proud to ask for help, even from my friends and family, but the reality is that I can do very little for myself. From nutrition, washing/dressing, transportation, managing finances, speaking to doctors etc I am reliant on someone else far more than I'd like to be. Getting a power wheelchair would at least allow me initally just to move around the house freely by myself whilst helping with my pain levels. Being able to take my dog for a walk would be pure joy for me, since it's been something I've been unable to do for years. Getting out there into the world that's passing me by is my ultimate goal.
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.
Organizer
Gemma Corner
Organizer
