A heartfelt JustGiving crowd-funding appeal has been set up to help 17 year-old Jessica Gray who for the past seven years has lived with a rare and acute form of a condition called Chronic Regional Pain Syndrome.
Jessica, who lives in Cambridgeshire, said: “Basically my nervous system miss fires nerve messages and the skin of my right leg (from my hip to my foot) is so sensitive that just a slight touch, bump or even a change in temperature can provoke intense pain.
“From the top of my right leg down to my ankle, I have large chunks of numb patches which makes trying to move really difficult as I cannot manually move my leg.”
“A single soft touch or even a drop of water feels like a stab and can cause me to scream in pain or fall unconscious. Using the McGill Pain index which doctors use to measure pain, CRPS scores the highest, even higher than cancer and childbirth!”
The pain is usually confined to one limb, but it can sometimes spread to other parts of the body. Affected areas can also become swollen, stiff or undergo fluctuating changes in colour or temperature.
Jessica, from St Neots, continued: “I’m now bed bound and having intensive physio to get into my custom made wheelchair although this is so hard due to pain. I’m stuck in the living room in a hospital bed most of the time, 24 hours 365 days a year. It’s that or I’m having a flare up and in hospital on a PCA morphine pump and having loads of IV drips. This is a regular routine for me in my life unfortunately.
“Last week I came home from a three month hospital stay from a flare up of my condition. I had continuous spasms in my CRPS effected foot. This meant me being hooked up again to lots of IV drips and PCA morphine pumps to try and control the pain. I was unable to move in bed for the whole three months, and lost a lot of weigh and muscle tone. I was seriously ill.
“I also now have Scoliosis after being in a wheelchair for so long, and all my tendons have fused together. This is why I’m having to have made a custom built wheelchair moulded to my body which is a great expense too.
“For the past two years I’ve had weekly hospital visits in London. I will also soon need two ground-breaking back operations (SCS) where a device will be surgically implanted over my spinal cord and connected to the nerve systems. This could help reduce the pain so I can reduce the amount of opioids I have to take as a result of the pain.
“Complications include paralysis of the nerve they hit so it’s risky and infection rate is high. If this works it’s something that has to be redone every 10 years. This disease will never be cured though and I will always be a wheelchair user. Ultimately, the end result of this condition if it doesn’t get any better and the blood supply stops is amputation which I so desperately don’t want to happen.
“For years now I’ve been sleeping downstairs on the sofa, meaning I have to make my parents go upstairs to bed at 8pm as due to the meds, it makes me really sleepy. Also I suffer with Chronic Fatigue Syndrome so that doesn’t help either. It’s like were living on top of each other.
“I now have a large hospital bed in our front room which means we only have part of a sofa as I take up the whole of the living room. I’ve applied for a disabled grant to get a downstairs bedroom and wet room which I so desperately need. They can only provide me with a bedroom as there isn’t enough money for a wet room.
“This means I have to continue with bed washes and bed pans for going to the toilet: as a 17 year old girl this is the last thing I want to do. Having a downstairs bedroom and wet-room will give me the space to recover from all the pain and trauma, release family stress and give me the privacy a 17 year old girl wants to become independent again.
“Any donations, small or large will be greatly appreciated and will completely change my life. If any local companies could donate gifts that we can auction off or put in the raffle to raise more money on the fundraising night in January in would be much appreciated!”