Thank you to Ruby for sharing her story of living with Hypermobility EDS and her achievements. In January 2012, I was diagnosed by a specialist health professional with Hypermobility Ehlers-Danlos Syndrome and Postural orthostatic Tachycardia Syndrome (PoTS) I first started experiencing widespread chronic pain when I was 15 and I was frequently told by doctors, physiotherapists, teachers and GPs that it was only growing pains and you will just have to get on with it. I started using crutches because I couldnt walk without them, and things gradually got worse resulting in me being bed bound for nearly a year. I missed my entire GCSE year at school and had to do all my work at home, luckily I still got good results but my EDS seriously affected my education. After trying a stupid amount of medication and physio exercises with no luck in helping the excruciating pain, my mum decided to take things private to see a Hypermobility specialist in London. After finally being understood in what I was saying, getting an official diagnosis was the biggest relief I could have felt. The outcome of this appointment included me attending a three week residential pain management rehabilitation programme in Bath. The referral took six months and frankly, these were some of the worst days of my life. The endless waiting was horrible, with my pain getting worse each day - some days I couldnt even lift a cup of water - it felt like I was going to be in a wheelchair for the rest of my life; as you can probably imagine, was a terrifying thought. The three weeks I spent in Bath were the most life changing weeks ever. The staff were incredible and really understood everything I was going through. I had to teach my body to learn to walk again completely - not something anyone should have to go through especially at 15. My day of discharge from the hospital was the day of my year 11 prom, and after a rush of driving home, I managed to go - without my crutches! This was such an enormous achievement and the look on peoples faces seeing me walking again was hilarious. Since the beginning of my recovery, there have been highs and lows, trips in ambulances and a large amount of morphine alongside nitrus oxide. Thankfully after learning to take control of my disability, I am a completely different person physically and mentally. My joints are not perfect and I still use my wheelchair on long trips but day to day life is not such a trauma. My reason behind this post is the fact that my condition is INVISIBLE. People do not SEE what is going on inside of my body. You dont see the constant ache in my hips and the pain when my kneecap shifts out of place. You dont see the constant fatigue and blackouts I experience daily. I know that this is not a condition which is common knowledge but why shouldnt it be? There are thousands of people living and suffering because doctors and nurses have never even heard of this quality of life threatening illness. MORE PEOPLE SHOULD KNOW WHAT EHLERS-DANLOS SYNDROME IS! I am not bitter about this condition because I am so thankful that it has happened to me and no one else. It has also helped me grow and understand that people suffer a lot more than what they present to other people. This condition will not leave me over time, but it will also not define me. There are many other things about me which make up my personality and this is just a tiny aspect of my life. I really hope this has helped you to understand that not all disabled people are visually disabled. Please stop and think sometimes. If you want to know more or if you suffering from this then please contact me! I would love to talk to more people about my experiences with living with EDS. Please read my blog!
Posted on: Sat, 08 Nov 2014 21:00:01 +0000
Trending Topics
Recently Viewed Topics
© 2015