Summer has arrived without a doubt, beautiful cloudless sky, sweltering heat and wonderful days out whilst I’m on my uni holidays. However, the arrival of summer also means that my body is working extra hard to compensate which has resulted in periods of tachycardia, eye and other spasms and an increase in pain. Sunglasses are now a permanent feature to try and relieve a bit of pressure on my eyes, but short of sitting in the freezer there’s not too much that can be done.
When I first became ill I found my focus was entirely on all the things I thought I wouldn’t be able to do anymore. Over the years I have conquered all the hurdles I was facing or found ways around them. Going to university was a huge deal and quiet the achievement for me. I’d been so reliant on others for years that living on my own and only having care for a little while a day was a nerve wracking decision to make. As you can imagine the idea of juggling a baby and uni has been a bit daunting.
Stefan’s first trip to Oxford Brookes University
At first, I didn’t know how I would manage both, but last week we ventured up to my university so I could sit my last exam of my second year. I was extremely lucky that my lecturer was willing to look after Stefan whilst I sat the exam. This has given me the confidence that I can do both, and that I’ll find ways to cope, for example little things like strapping the pram to my wrist so that if I have a seizure or have an extreme spasm he’s perfectly safe and can’t go anywhere. Small things like this put my mind at ease and reassure me that despite my conditions I can manage life as a student and mum.
Keeping the pram attached
In the winter I quickly discovered that cold weather and Dystonia do not mix, my body spasmed constantly and I had to leave the house with several layers on and a hot water bottle or two! I never worried about how the heat may affect my Dystonia, and if our weather had stayed typically British then I am sure my spasms would have stayed to their ‘normal’ rate.
Now don’t get me wrong I love the fact we have had a lovely stretch of untypical heat, which in turn has led to BBQ’s, evenings in the garden etc, however I don’t love that it is sending my feet and legs barmy. I get through the day but by the evening I want to beg my feet to uncurl. In desperation I bought a desktop fan for my room to help me at night, which is so far working a treat. It has been a delight though to see the blue skies and watch birds on the bushes outside my bedroom window. Summer always brings a little uplift in mood for me which is fantastic.
My Botox is definitely kicking in now and I have barely any pain thanks to the spasms disappearing. I have some pain in my TMJ‘s (your jaw joints) but this is nothing in comparison to what I was in. It is amazing how much of an impact these injections can have and I feel very lucky that I respond well to them.
Thanks to the permission of some amazing people I have compiled a letter for the Health Secretary containing the different stories of people with Dystonia and their struggles for help. The Health Secretary told me he could not deal with just one case so I decided to compile these stories and open his eyes to the struggles we go through to receive treatment! Whilst I recognise some people have had fantastic service from the medical society, so many people have not and their voices need to be heard.
If you would like to help me open up the government and the NHS/private doctors eyes and try to get more help for us sufferers then please contact me with your story at either firstname.lastname@example.org or here https://www.facebook.com/dystoniajourney .
I spend 99% of my time shut up in my room due to Dystonia. Throughout the months leading up to this summer I was concerned as to how my body was going to react as bright light triggers my eye spasms (I am unable to currently wear my sunglasses or glasses as it causes a facial spasm) and I have to be careful in the sunlight as my antibiotics for suspected Lyme Disease causes light sensitivity. I had been thinking for a while now that I was just going to have accept that I would be having to spend the whole of the summer indoors.
It turns out I need not have been so pessimistic. This week I have been out in the garden several times with my family, family friends and had two BBQ’s. I was overjoyed to be out socializing with our family friends. We made sure I was in the shade so that both my body and eyes were protected. It was perfect and I had such a great time.
This achievement has left me thrilled as it has reassured me that I can enjoy this summer and the summers to come without worry. I only have to be a bit careful and that’s not much of an issue. Being out in the warmth and socializing has really lifted my spirits and left me feeling overjoyed and calm.
I look forward to seeing what the rest of the summer has in store.