Help Caitlin get the wheelchair she needs.
Donation protected
Hi, I’m Caitlin Stark (yes, like Game of Thrones, yes also kind of like Iron Man).
So, let’s start at the very beginning (a very good place to start). Straight into the nitty gritty - I have, among other things, something called Ehlers - Danlos Syndrome (or EDS https://www.ehlers-danlos.com/what-is-eds/ ) It’s a connective tissue disorder in which the body does not form collagen correctly (everyone is bad at something, right?)
It most commonly presents first as hypermobility but effects everywhere there is collagen. There are a huge range of health issues involved - joint dislocations and subluxations, chronic migraines, dysautonomia, tendonopathy, petechiae, vision loss, the list goes on. It is among other things, unfortunately, very painful.
Luckily (sarcasm) I also have PoTS (Postural Orthostatic Tachycardia Syndrome) which is autonomic dysfunction very commonly found in people with EDS where basically doing anything other than lying down flat causes your heart rate to double or even triple. Cue dizziness, breathlessness, cold sweats, nausea, numb legs and blood pooling, and an incredible amount of pressure in my head - eventually I lose my vision and it will all end in fainting if I don’t lie down and let my heart rate return to normal.
“WHY ARE YOU TELLING ME THIS?!” - I hear you demand.
Well, since I was 12 I have been in and out of a wheelchair as my symptoms fluctuated.
Over time my pain has progressed, it no longer needs to be triggered, it’s just here.
So I slowly stopped doing things. I stopped going grocery shopping - or any shopping, I stopped going to most events, going out with friends.
Everyday things have become a struggle, I can’t clean my house or stand over the stove to cook dinner, even writing hurts.
Ultimately this has meant I haven’t been able to work in a long while, an issue which has been compounded by my growing number of specialist, physio appointments and medications.
I’ve reached a point where chronic pain and cardiac symptoms have meant that my needs in a wheelchair have also changed. Sure it has allowed me to leave the house with fewer PoTS symptoms, but my current wheelchair causes me a great deal of pain in my hips and back. Damage to my shoulders means I can’t push myself without pain and subluxations so I have become completely dependant on my mum and my best friend (and housemate) Yas, and while they never *really* complain about lugging around my dead weight around in a crappy, heavy, wheelchair my loss of independence has hit hard.
SO, it has been decided for me - the time has finally come for a REAL wheelchair - an ultra light wheelchair that has been made specifically to accommodate my aches, pains and weird joints and more importantly a wheelchair with power assist (basically an electric motor).
The cost of a custom wheelchair alone is prohibitive, an electric custom wheelchair even more so. My car won’t accommodate an electric wheelchair so my only option is to get a custom manual wheelchair and power assist attachment. The bad news, this wheelchair could end up costing almost as much as my first car.
Here’s where you come in, reader. Right about now I’m hoping your New Years resolution was something philanthropic and I’m REALLY hoping you found $5 in the washing machine or under a sofa cushion earlier today (finders keepers) or MAYBE you’ve been thinking of cutting back on caffeine? Not even the good stuff, I’m talking 7Eleven coffee here..... Basically what I’m trying to say through the teeth-clenching awkwardness that is begging for money on the internet, is that if you have some spare change rattling around (seriously, even $1 - I’m not kidding) I would be so grateful if you would donate to my wheelie fund - like, uplifting christmas movie levels of warm fuzzy feelings.
And if you’re not in a position to donate THAT’S OKAY TOO. I would also be appreciative if you would share this with your friends and family who have washing machines and sofas and coffee addictions and New Years resolutions too.
So, let’s start at the very beginning (a very good place to start). Straight into the nitty gritty - I have, among other things, something called Ehlers - Danlos Syndrome (or EDS https://www.ehlers-danlos.com/what-is-eds/ ) It’s a connective tissue disorder in which the body does not form collagen correctly (everyone is bad at something, right?)
It most commonly presents first as hypermobility but effects everywhere there is collagen. There are a huge range of health issues involved - joint dislocations and subluxations, chronic migraines, dysautonomia, tendonopathy, petechiae, vision loss, the list goes on. It is among other things, unfortunately, very painful.
Luckily (sarcasm) I also have PoTS (Postural Orthostatic Tachycardia Syndrome) which is autonomic dysfunction very commonly found in people with EDS where basically doing anything other than lying down flat causes your heart rate to double or even triple. Cue dizziness, breathlessness, cold sweats, nausea, numb legs and blood pooling, and an incredible amount of pressure in my head - eventually I lose my vision and it will all end in fainting if I don’t lie down and let my heart rate return to normal.
“WHY ARE YOU TELLING ME THIS?!” - I hear you demand.
Well, since I was 12 I have been in and out of a wheelchair as my symptoms fluctuated.
Over time my pain has progressed, it no longer needs to be triggered, it’s just here.
So I slowly stopped doing things. I stopped going grocery shopping - or any shopping, I stopped going to most events, going out with friends.
Everyday things have become a struggle, I can’t clean my house or stand over the stove to cook dinner, even writing hurts.
Ultimately this has meant I haven’t been able to work in a long while, an issue which has been compounded by my growing number of specialist, physio appointments and medications.
I’ve reached a point where chronic pain and cardiac symptoms have meant that my needs in a wheelchair have also changed. Sure it has allowed me to leave the house with fewer PoTS symptoms, but my current wheelchair causes me a great deal of pain in my hips and back. Damage to my shoulders means I can’t push myself without pain and subluxations so I have become completely dependant on my mum and my best friend (and housemate) Yas, and while they never *really* complain about lugging around my dead weight around in a crappy, heavy, wheelchair my loss of independence has hit hard.
SO, it has been decided for me - the time has finally come for a REAL wheelchair - an ultra light wheelchair that has been made specifically to accommodate my aches, pains and weird joints and more importantly a wheelchair with power assist (basically an electric motor).
The cost of a custom wheelchair alone is prohibitive, an electric custom wheelchair even more so. My car won’t accommodate an electric wheelchair so my only option is to get a custom manual wheelchair and power assist attachment. The bad news, this wheelchair could end up costing almost as much as my first car.
Here’s where you come in, reader. Right about now I’m hoping your New Years resolution was something philanthropic and I’m REALLY hoping you found $5 in the washing machine or under a sofa cushion earlier today (finders keepers) or MAYBE you’ve been thinking of cutting back on caffeine? Not even the good stuff, I’m talking 7Eleven coffee here..... Basically what I’m trying to say through the teeth-clenching awkwardness that is begging for money on the internet, is that if you have some spare change rattling around (seriously, even $1 - I’m not kidding) I would be so grateful if you would donate to my wheelie fund - like, uplifting christmas movie levels of warm fuzzy feelings.
And if you’re not in a position to donate THAT’S OKAY TOO. I would also be appreciative if you would share this with your friends and family who have washing machines and sofas and coffee addictions and New Years resolutions too.
Organizer
Caitlin Stark
Organizer
Riverhills, QLD