THE BLOG

Living With a Rare Disease

01/03/2016 11:50 GMT | Updated 01/03/2017 10:12 GMT

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I have had health issues my whole life, although mild, we can now look back and see the 'signs' that I wasn't the typical child. I had joint pain as a child and presumed these were the 'growing pains' all my school mates were feeling. I was always very flexible and suffered lots of dislocations. I got tired quickly and had issues with my gut, being hospitalised numerous times for chronic constipation. Despite this I was an active child and spent most my time outdoors.

It was when I began puberty that my health took a turn for the worse. I fought to be heard in regards to my symptoms, sadly being labelled with mental health concerns and told this was the cause of my health issues, despite increasingly worsening gastrointestinal problems, causing me huge amounts of pain. I began fainting often I couldn't eat without my stomach doubling in size and it was at this point my Mum had to fight for more to be done. Each time my symptoms were brushed aside, blaming me not wanting to eat. There was a complete disregard of my pleas for support and medical professionals failed to see the correlation between my symptoms.

In 2014 my life changed. On holiday in Tenerife, I went on a boat out to see the dolphins, we had the chance to trapeze into the sea, being the person I am I jumped at the chance! Unfortunately, as I hit the cold water and gasped for air I swallowed a large amount of sea water. This gave me a severe gastritis.

I have not been able to eat or drink since, now diagnosed with Gastroparesis and Intestinal failure. I spent the rest of 2014 in hospital, it was during this time that I was diagnosed with Ehlers Danlos Syndrome by an educated rheumatologist that happened to see the correlation of my symptoms.

This was the first time I felt that the true severity of my symptoms had been validated and understood. It bought huge relief that I had a name for the turmoil my body was in and although the thought that I had a lifelong condition was difficult to comprehend, it was extremely comforting also. I felt like I could finally be stripped of all opinions that had suggested my condition was psychosomatic and this really boosted my confidence and self-esteem.

Since 2014 my health has rapidly declined.

I rely on numerous machines, medications, treatments and procedures each day to help my body do things other people do without giving second thought. This can be really draining, but I don't see it as a complete negative! Being so unwell has taught me how to fine tune my emotions and appreciate the small things in life. I feel that I am so much more equipped to use my experiences and support others empathetically going through a difficult time, and I continue to draw out the positives each day, realising that although my abilities have changed I am still very capable of fulfilling my hopes and dreams.

I am mostly bedbound, although I do my best to get up and about as much as possible! I use a specialist wheelchair as I have no use of my legs, my wheelchair enables me to go out and continue to feel independent. I am attached to all sorts of pumps and because my gut doesn't work I am fed special artificial nutrition into my veins for a majority of each day, as well as lots of different medications.

My health is very very unpredictable and for that reason planning can be really difficult. My family and I choose to live in the moment and take the pressure off me being well enough for pre-arranged activities. This really boosts my confidence levels, knowing that I don't have to worry about cancelling plans etc.

I need round the clock care, my Mum has played a huge part in this. Since 2014 I have been in hospital most of the time, Mum has not left my side! Being in hospital puts you in a bubble away from the rest of society and this can be really really tough, but I refuse to let it put my life on hold! I try to keep in touch with others via social media and via letters and calls. Whereas when I was well I would have been out and about with friends, I have had to change how I socialise to make the most of the situation, I remind myself this isn't a bad thing- it is just different!

I have to spend a lot of time each day doing things that are medical, attending numerous appointments and organising different parts of my care, it could become overwhelming so I have to make the conscious effort to also do things I enjoy (usually art/craft related!) so I do not feel swamped by the stresses and feel I am still achieving small goals.

Rare diseases are hard to say, but even harder to live with: https://youtu.be/x7P0joWnhCY