Posted in Archive, January 2021

Hormones and Chronic illness

Hormones, they hit us out of the blue in puberty and never stop showing up no matter how much we hope they may just skip a month. Even before my diagnosis of Dystonia my monthly visits from the witch were awful.

During my teen years my periods were unpredictable; sometimes not showing up for months and sometime arriving every two weeks. They would leave me doubled over the toilet in the night throwing up from the cramps, and going through a pad in under an hour over and over again. I spent years visiting my then GP who told me all this was normal and that I needed to learn to deal with these symptoms. It was only then when I was studying for my midwifery course that I had the courage to go to a new gp who recognised my distress and referred me to gyny. One operation later and I was diagnosed with Endometriosis.

Quote from Camran Nrzhat, ND.

Now my periods are worse than before and on average last 72 days. Yes you read that right. They last 72 days. Now normally they’d treat with a hormonal contraception to stop the period. Here’s where my health comes into play. My spasms, now I don’t know whether this is my Dystonia or EDS, but I can’t use any intrauterine device as the spasms physically reject it from my body which is fairly uncomfortable. The pill*/patch/injection all work on giving you progesterone however I am unfortunately one of those rare Ehlers Danlos suffers who can not tolerate this. The increase causes a dramatic increase in dislocations body wide.

*I am aware there are pills that are not just progesterone based however due to the fact I get daily migranes with aura I cannot take these as it increases my stroke risk.

Between the prolonged bleeding which leaves me severely anaemic (currently 3.1), the increase in spasms, dislocations, fatigue, it’s fair to say hormones really screw me over. So gentle hugs to all who also experience this. Remember chocolate always helps!

Posted in Archive, August 2013

Harsh Reality

September 2011 I started at Anglia Ruskin University in Chelmsford on a Midwifery degree. It was the most amazing experience of my life. July 24th 2012 I developed Oromandibular Dystonia and was put on intermission for a year. Today I was withdrawn from university on debilitating health grounds. You have no idea how much I wish to pull my little Dystonia alien out and scream at him.

My university was extremely kind about it all and I hope that in a few years time if I am well enough that I can reapply to do my Midwifery degree. In the meantime I plan on doing a Level 3 in Anatomy and physiology, and once I’ve finished that I will see where I ¬†go from there. I have known for a few weeks that this conversation with my uni would have to happen, and have dreaded it. I had hoped that as I knew it would happen that it would not be too bad however the reality is that I am extremely upset and want to scream at the doctors until they invent a cure.

I struggle to understand how it is ok for Dystonia to upturn, stomp all over and turn inside out our lives. I struggle to comprehend why sufferers then have to fight for treatment and care. I struggle to accept the reality I’m living. I won’t ever accept it, because none of this is ok. I know one day a cure will be found and I hope it shall be in this lifetime so that I can reapply for uni.

On a brighter note my body is not too bad today which is nice and a DVD called The Host which I have excitedly been ¬†waiting for has arrived – It is a fantastic book and an amazing film. I plan on doing nothing for the rest of the day other the watch The Host again (even though I only finished watching it ten mins ago), and then I am going to indulge myself in a bit of 50 shades freed as it’s an easy read.

Tomorrow will seem brighter, and I will get there eventually, one way or another.