For the past 10 years I have lived with a rare and acute form of 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 drop of water feels like a stab and causes me to fall unconscious and screaming in pain. Using the Mc Gill Pain chart, CRPS scores the highest, even higher than cancer and childbirth!

June 2020 I was again airlifted to hospital as I had severe sepsis from my foot/leg. My kidneys and liver had started to shut down. If it wasn’t for the incredible air ambulance team I wouldn’t have made it. After going through HELL the past 9 years, I’ve finally had my amputation which so far has all gone okay, but I’ve now found that the basic treatments I need to aid the best chance of a good recovery and quality of life aren’t available on the NHS. The things that come with having incurable chronic illnesses that people don’t think about our costs. As good as the NHS is often people with long-term illnesses need prolonged treatment which the NHS don’t offer.

It’s things like prosthetic limbs, what they don’t tell you if you need more than one! The NHS can supply a basic leg that looks like a dogs toy, but it doesn’t have all the features of a real leg. After researching, prosthetic limbs are between £5-8000. Once you have your prosthetic leg, there is still ongoing costs as your stump changes.Its really important to me that i get a prosthetic leg that generally looks like my leg. I’d like it to have individual toes so i can wear sandles in the summer. And toenails so i can paint them just like my other foot. All theses “little things” the NHS don’t do as there deemed cosmetic, however I’d argue otherwise.

Another thing is the NHS will only offer me 6 sessions of physio as an outpatient, if I would like more I would have to look at going into a rehabilitation center which could be hours away from home. Why should I have to leave home and my family for physio that could be done at home? Treatments like hydrotherapy would be amazing for me as they would benefit my whole body. It’s not just my leg that’s the problem, I have multiple chronic health conditions affecting my immune system, and my muscle structure and tone. My hips are out of alignment and I have mild curvature of the spine. 1x 30 minute hydrotherapy session costs around £50-70 depending on the level of assistance needed.

I was so lucky when we fundraised a few years ago to help build a downstairs bedroom and wetroom for me that when I’m medically fit I will be able to leave hospital. But without continuous therapies and equipment, I will still be restricted to living in bed, which is not what anyone wants, let alone a sociable 20-year-old girl!

For nearly half of my life I’ve been through struggles I wish upon no one: the pain, sickness, infections you name it. All I wish is to be able to get into a wheelchair, and go out and do whatever a normal 20 year old would do! I’m a long way off this point, I need to get out of hospital and recover but with your help and kind generosity hopefully we can get me the treatment and equipment I need to give me the best quality of life. Any donations, small or large will be greatly appreciated and will generally help change my life. Thank you!

Ive created an instgram page called @fight_for_jess to document my journey and raise awarness of my conditons. Please give it a follow! :)