May is Ehlers-Danlos Syndrome awareness month. I'm going to blog throughout the month with ideas that I feel are important to raise awareness. I'm not very good at talking about my illness in person, I can't always find the right words and I worry about how I'm going to be received. But I'm going to use this blog to portray the things I struggle to speak. I'm going to introduce you to me in my first post.
My name is Hanna and I'm a 21 year old student studying English Language at University. I like to embrace everything that I am able to do, because I don't know what the future holds. I like to go jogging and rock climbing, take long walks, have nights out, go shopping and sometimes I'm an adrenaline junkie. Because most people see me doing so many active and fun things, they may perceive that my illness does not impact on my life, but it does. My health can move from stable to extremely poorly in a matter of hours, and last for a matter of minutes or hours to weeks or even months at either extremes. I don't want people to think that my life is all illness, and I don't want to think of myself that way, because it isn't, but my Ehlers-Danlos Syndrome has severely impacted my life since the day I was born. I don't know what it's like to be healthy and I don't know what it's like not to experience some degree of pain. I don't know what it's like to eat food and not feel or be sick afterwards. I don't know what it's like to go about my day without accidentally hurting myself or feeling a joint go pop. This is every day.
Sometimes I am SICK. Sometimes I go out for a jog. Sometimes I lie on the floor and shake, and clench my arms around my stomach and wretch - I'm terrified to leave the bathroom. My life has a high density of nights sleeping on the bathroom floor. Ehlers-Danlos Syndrome sucks. Sometimes I cry because it hurts and I don't know how to put one metaphorical foot in front of the other. I have a hard time getting people to understand just how unbearable being ill is. There are no words for it. It doesn't just hurt, it's so much more. I beg for just someone to do something, to make it stop. Nobody can, because at this moment there is no cure for Ehlers-Danlos Syndrome.
Ehlers-Danlos Syndrome is a genetic condition, which I will explain more about in a later post. It is a connective tissue disorder, which means it can affect any part of the body that contains collagen (that's most of it!) It affects everyone in different ways - universally, we all have problems with our joints to some degree. This results in dislocations or subluxations (partial dislocations), muscle wastage and hypermobility (this means that our joints stretch further than they should, because the collagen doesn't hold it in place - that is why we experience dislocations and subluxations). My first dislocation was when I was two - my Mum was just helping me up off the floor and my arm popped out. I have a dislocating left knee and heavy muscle wastage in my left shoulder. Due to general muscle tone, I have a delay on my left side.
My most prominently affected system is my gastrointestinal tract. When I was born, I had to have my stomach pumped because it was full of green bile. I couldn't hold down milk as a baby, or sleep led down due to vomiting. I wasn't fully weaned onto solid food until I was nearly four and I struggled with any food ever since because it gave me so much pain and made me feel so sick. When I was 13 my GI tract significantly worsened and when I was 16 I was diagnosed with Atypical Inflammatory Bowel Disease, or Autoimmune Enteropathy. I underwent two years of steroids and immunosuppression therapy. I was fitted with a feeding tube when I was 19 as my gut was struggling to cope with food. I am slow dripped special formula so that my gut doesn't have large amounts to process in one go. I have dysmotility of my small bowel - it doesn't move food through because it is affected by my Ehlers-Danlos Syndrome. Where there is gut involvement, the stomach, small and large bowel become floppy causing it to function in an uncoordinated manner. Some people have problems with the nerves or muscles in the bowel, while others have paralysis of the stomach or colon. My dysmotility lies in my small bowel. When my gut runs slowly it causes me masses of pain, which is barely controlled by a cocktail of narcotics. My sickness is so poorly controlled that I have had to inject myself with various anti-sickness drugs - this makes them become more potent in the blood stream and it skips my poorly functioning digestive system.
I also suffer from heart arrhythmias. I like to keep myself fit, and while this is often difficult due to pain, I know steady exercise helps my autonomic nervous system. The autonomic nervous system controls internal mechanisms such as heart rate, breathing, blood pressure and temperature. People with Ehlers-Danlos Syndrome are prone to a condition of the autonomic nervous system called POTS - Postural Orthastatic Tachycardia Syndrome. This gives us a fast heart rate and a low blood pressure. It means that movement or change in posture can cause dangerous cardiac rhythms or drops in blood pressure causing fainting or blackouts. Sometimes I am unable to get out of bed because I'm unable to stand straight as a result of my POTS. Autonomic dysfunction also causes poor circulation, sweating or temperature control. I suffer from low body temperatures and poor circulation.
I also suffer with problems with my kidneys and bladder. It's still unclear as to why my kidneys and bladder are the way they are, but these problems are also common in people with Ehlers-Danlos Syndrome. I have a thickened bladder wall and a condition called reflux nephropathy - this means that the tubes that carry water from my kidneys to my bladder work in both directions. This could be caused by the defect in collagen, allowing the tubes to become uncoordinated and floppy like my small bowel. It gives me a lot of pain in my kidneys and I have to take long term antibiotics as I get so many infections in them.
I have physiotherapy on a regular basis - every fortnight, to try and strengthen my muscles to support my joints. Ehlers-Danlos syndrome is a progressive illness meaning that damage to my body caused by the faulty collagen causes deterioration. I try to do everything I can to stay as healthy as I can and at the same time throw myself into all the things that I can do. I want to live like everyone else as far as possible. Sometimes that hurts and sometimes it is exhausting - but it is so worth it and this is the way I choose to live my life while I can! :) I don't know what my life will be like tomorrow, but I know that the focus will always be on what I can do and what makes me happy. I enjoy living, and I am grateful for all the things that I have been able to do and still continue to do. Life with Ehlers-Danlos is extremely difficult but NOT impossible.
