Fighting Dystonia, Chronic Lyme, EDS Type 2 & more… any questions?

Posts tagged ‘Botulinum toxin treatment’

Rare Disease Day 2020

When I met my partner Damon back in 2016 I was upfront about the fact that I had a whole host of chronic conditions some of which would deteriorate as I aged. It was a subject that I broached on our first date, romantic I know, but it was important to me that he knew life with me would not be an easy one; our first date lasted five hours. What was meant to be coffee, turned into a museum trip, and hours spent talking on a bench overlooking the River Cherwell. At the time my Dystonia was my most limiting condition. The EDS was annoying and had its fair share of debilitating moments but in comparison was easy enough to deal with.

However over the years with a good combination of medication and very regular Botox injections my Dystonia is often far more controlled, yet my EDS has spiralled dramatically so. My jaw which takes the brunt of both conditions is in need of replacement yet both conditions make replacement not necessarily the easiest call for my surgical team; it’s an ongoing argument. My knees are in a similar state. They too need replaced. They currently sublex at 0 and 30 degrees constantly yet bracing doesn’t seem to work due to the change in position with each time the knees come out of place. I frequently joke that I’m falling apart and honestly it feels that way.

The latest part of me to be affected is my hearing. My hearing tests have showed that im hearing impaired and im awaiting further appointments on the next steps to see what aids will help me. Whilst my hearing being affected isn’t overly surprising, it wasn’t something at 27 I expected to be told. However after almost a year of struggling I knew it was time to give in and get some help.

If you look at me you could be forgiven for not realising anything was wrong. Which is one of the reasons Rare Disease Day is so important. Disabilities come in all variations and I for one never look the same one day to the next.

I always say no hospital untill I’m unconcious.

Oromandibular Dystonia is Back

Today has been one of those days where I wish I could have slept through it. My jaw has been trying to spasm for about a week and today I woke up with it in a full-blown crazily painful spasm. I manage to deal with most of my other spasms fairly well, however due to the amount of pain my jaw causes I find these spasms very difficult and exhausting.

I always try to carry on with my day as normal when my jaw spasms as I do not like to give in to the pain, however today has felt like a real struggle. On top of this my body in general has acted up today, with my eyes being the worst resulting in several prolonged periods of functional blindness due to either my eyelids clamping shut or my eyes spasming upwards in their sockets. Despite this however, I still did all my workouts which I am very happy about!

I saw this quote earlier and it made me realise that on days when the pain is too much and I am exhausted, it is ok to get upset/cross or sleep through it because you don’t have to be strong 100% of the time, you just have to pick yourself up and brush yourself off afterwards.

Even though it is still several more weeks until I can have any more Botox treatment done to my jaw and neck, I am still going to let my consultant know so that he can book me in for my next lot of treatment. I am hoping that tomorrow my body gives me a little bit of a break, so that I can feel a bit more alive than I have felt today.

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