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, December 2020

So This Is Energy?

If you’ve been following my blog for a while, or if you’ve been here since the beginning, you’ll know that pacing (for many years) was like a swear word to me. The doctors threw it around a lot, really pressed the importance of it, but no-one really explained how to implement it properly into my life. I felt like I was being told to sit down and accept my fate of not being able to do anything, anymore. As someone who likes to be busy, I didn’t accept this instruction.


Don’t misunderstand me, I tried. I’d manage a few days of what I viewed as pacing and then I’d slip back into my old habits, trying to live a normal life of activity with no adjustments. The consequences of doing this was that I hit that ’empty spoon’ wall hard and often. Each time regretting it as I then took days to recuperate.


I’m currently coming towards the end of the 3 diplomas I’ve been studying, in Health, Wellness and Life Coaching – specialising in life management with chronic illnesses. I’ve loved the course itself but seeing the difference applying it to my daily life has had, has been amazing. It’s completely changed my understanding of pacing and therefore helped me to apply it to my life with ease.


Yesterday, for example, I was feeling much better than usual so I asked my son what activities he would like to do. I had already decided I would say yes to whatever he chose to do and would find a way to adapt it if needed. He asked to cook with me. So we got the soup maker out to eliminate the amount of cutting and hot heavy lifting of pans. He loved peeling the onion and garlic, cutting out the amount of herbs. It was a gentle session, sat down and full of laughter.
I know energy filled days won’t always be here even when I’m 100% on track, but by pacing, asking for help more etc.it reduces how often flare ups will happen. It’s making a huge difference not just to how I’m coping physically but also to my mental health which has had a real boost.

Posted in Archive, October

Last nights Dystonia antics

I have never been a flexible person. The only part of my body that is flexible is my arms and wrists. However last night the little dystonia alien decided to show me just what it could make my body do. For a few hours before my dinner, my leg had been playing up a bit, my foot was bent and was dragging behind me. However during dinner it seemed to calm down and I relaxed. When I tried to get up from the table and hop to the living room, with my mum helping me, the dystonia alien decided to wake up. Before I could brace myself, my leg went into a spasm, sliding itself backwards. My stepbrother fetched a chair for me to sit on, so that I didn’t fall down. Yet my leg kept going backwards. Within minutes I had no choice, I had to either try to slide myself off the chair and onto the floor or have the spasm cause me to fall onto the floor. By the time I was on the floor, I was literally doing the splits. Despite being in agony, I had to laugh, I am not flexible, yet here I was on the floor in spasm doing the splits.

Eventually the spasm eased off and with the help of my Grandmother and my Mum, I got up off the dining room floor, and tried to hobble through to the living room. However the dystonia alien had not finished playing games. My right leg and foot shot behind my left leg. To those around me, it must have looked like I was curtsying. Yet again I ended up on the dining room, the spasm had pulled my leg as far as it could go. Again I ended up laughing. I am not sure whether I laughed because of the situation or if I laughed in exasperation, perhaps it was a bit of both. It took a fair length of time for the spasm to ease off.

I still cannot get over how far my dystonia pulled my leg and foot last night! The spasms in my leg and foot have always been pretty extreme and odd to look at, but last night was ridiculous. I now wish I had gotten someone to take a picture/video the spasm so I could show the specialist, I shall remember to ask someone to do so next time. Despite last nights spasms being so extreme, I feel rather positive today! I surprised myself at how well I coped with the pain of the spasms last night, especially with them being so extreme. I feel that with each spasm the dystonia alien throws at me, I gain more confidence, as I know that I can deal with my spasms fairly well.