For the past 7 years I have lived with a rare and acute form of a condition called Chronic Regional Pain Syndrome. This is where the nervous system miss fires the nerve messages. The skin of the affected body area becomes so sensitive that just a slight touch, bump or even a change in temperature can provoke intense pain. A single soft touch such as even a drop of water feels like a stab and causes me to fall completely unconscious and screaming in pain. Using the Mc Gill Pain indict which doctors use to measure pain, CRPS scores the highest, even higher than cancer and childbirth!

The skin on my foot and leg is now dying, my condition is getting worse day by day, and my poor family have to sit back and watch me suffer, I have to watch them grieve for the daughter they used to have too and it’s horrible. For years and years I’ve had regular hospital visits, normally in London. I can have 1 or 2 appointments one week or 4 and 5 the next. My condition has deteriorated so much, I’m now at the stage where I have to make a choice if I want to have 2 major back operations every 10 years, or have amputation. Both of these carry high risks, especially as I also have an auto-immune condition on top of everything else. How can a 18 year old have to make this choice that will completely change the rest their life?

Between July-late October 2017 I was in hospital seriously unwell, battering to save my life as doctors were concerned I was going to lose my battle. I remember the lady coming in and telling me the news. My head went blank, I didn’t know what to say; what do you say? Thankfully I pulled through, but this isn’t going to be the last time, it’s now a case of when I’m going to be rushed in and not if. I’m often having what I call a “flare up” and in hospital on a PCA morphine pump and having loads of IV drips.

I'm now bed bound and am having intensive physio to get me in my wheelchair as often as possible, although this is hard because of the extreme pain. This means pretty much all of the day I'm stuck in the living room in a hospital bed 24 hours 365 days a year! For years now I've been sleeping downstairs on the sofa in the living room, I now have a hospital bed and all my equipment in a small living room with half and sofa and a seat for my carer to sit next to me! I've now applied for a disabled grant to get a downstairs bedroom and wet room that I so desperately need. They can’t provide me with everything I need, hence why we are fundraising as we have no other option! They don't have enough funds to give me a bedroom and wet-room to fulfill my needs. Consequently I have to continue with bed washes and going to the toilet in bed which I've have had to do for many years now, and as a 17 year old girl this is the last thing I want to do!

Because I'm in the living room, it means the whole family are squeezed together, and if I need to sleep due to medications, I have to make them go upstairs which isn't ideal, but there’s no where else for them all to go!! 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 help completely change my life. Thank you!