A year on from my Hypermobility diagnosis

I thought I would make the effort to look back on the previous year in terms of my health, a lot has happened in such a small amount of time it seems and there is still a long way for me to progress yet.

It was just over a year ago that I had been diagnosed with Hypermobility syndrome (also known as Ehlers Danlos syndrome type III), and it had taken eleven long months previous for specialists to come to that conclusion. I have seen a total of ten different specialists, starting with an endocrinologist I worked my way through rheumatologists, a gastroenterologist, a cardiologist, a physiotherapist, pain management specialists, an elderly medicine specialist and I still have many more yet to go through.

I have had numerous blood tests, scans, x-rays, an endoscopy, a flexible sigmoidoscopy, an NM gastric study, four ECGs, an RX test, a tilt table study to name a few and I am still very much under investigation. Despite all of these tests that I can remember having done to me, I still do not have any further diagnosis or explanation for what is happening to my body.

Weight loss is still one of my biggest issues, no matter how much food I ingest due to rapid gastric emptying I am unable to gain weight. I can lose seven pounds a week easily if I am not careful, so it is important for me to try and maintain this. Another of my biggest problems is the fact that I feel dizzy, short of breath and can faint when I change posture too quickly. The specialists thought that it was due to autonomic dysfunction, but that has been ruled out.

It didn't take long to get used to being in an agonising amount of pain on a daily basis after two years, I believe my tolerance levels are improving and I can look completely unaffected despite feeling like I am dying inside. However, this talent has been both beneficial and detrimental to my progress. I do not like worrying people, so I try to put on a brave face when things are particularly tough and it didn't make sense to those that didn't really understand my condition or what I have to deal with. This usually led to the individual believing that I was putting it all on or exaggerating my plight, I wasn't in pieces crying or whinging about how horrible my condition had made my life, but if you had seen me a year ago a hot mess is exactly what I was.

So not much has changed, I suppose that is due to the lack of awareness of the illness and the state that the NHS is in. Waiting several months for appointments for tests and results proves very difficult, not to mention appointments with specialists that haven't got a scooby why you're sitting in front of them, when in fact you're waiting for results or an explanation. I have also encountered a lack of care and attention to detail in regards to my case, but what can be done when there is not enough awareness or interest in my condition? Hence why I consider myself lucky when I encounter a medical professional that is aware and clued up on EDS, whom can outline what my condition is and how it affects my body is refreshing. I am in more pain but I am growing more mentally stable to better cope with flare ups and injuries, I am adjusting to life with a chronic illness and recognising my limitations.

There are a lot of things that I still have to cope with, having hospital appointments every week and being away from my partner has taken a great toll on my mind and body. It makes me wonder how others with chronic illness cope with such stress and lack of medical process whilst dealing with pain, there are so many days where I feel physically and psychologically broken. I have good days and bad, luckily some treatments are improving some of the symptoms that I experience but I can't treat everything that I am dealing with. I am just taking things as they come each day, trying to move forward so maybe one day I'll get my dream of having a career, being independent, moving into my own place and creating beautiful memories with my better half that will stay with me for a life time.