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

Posts tagged ‘Botox Dystonia’

Isolation Week 2

Although I only received my instructions to isolate myself for the next 12 weeks from the government on Monday, we had infact already been in isolation for a week as both myself and my partner Damon bad been symptomatic. Whilst I’m pretty much symptom free now, Dame is still locked away upstairs as he remains unwell. Whilst he would only be considered a mild case, it’s worrying none the less.

We decided early on that we would follow all instructions to the letter as we know how risky a simple cold to me can be. The symptoms I had last week had me reaching for my inhalers constantly. What hit home in particular for me was our two year old son is also on the shielding list due to his medical issues. Luckiky, as much as he desperately wants to go to the park, he’s quiet happy accepting, that there’s a nasty bug outside, so for now he can’t.

It’s hard however to follow the governments instructions when my partners in isolation. For example I’m not really supposed to be particularly near our children and supposed to be three steps away from everyone. Well with Damon isolated I’m the sole parent, and they are now both sleeping in our room. There’s no alternative. But we’ve got to make the best out of a bad situation.

I’m starting to experience more spasms and pain as my Botox wears off. My next lot is supposedly in London at the end of next Month which I’m expecting to be canacled. I’m hoping an alternative can be arranged at a local hospital in the meantime.

I would love to hear how everyone’s isolation is going. So please in the comments on my Facebook page do let me know. I’m aiming to keep this isolation diary updated daily either with blogs here or VLOGS on the Dystonia and Me page.

Stay inside. Stay Safe. Support our NHS.

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.

An Anxious But Honest Return

This morning I was on the phone to my mum when she brought up the fact I hadn’t blogged in a long time. I am rather good at finding excuses for why; too tired, too busy with the kids, don’t know what to say. But none of those are completely true. So bless her, I rambled for quite a while as to the reasons why.

Firstly Ableism. Honestly I’m mad for allowing myself to be beat down enough to feel I didn’t deserve a voice as an activist for people with Dystonia and other invisible illnesses anymore. Up until the last several months I had been having a relatively stable patch which I had been making the most of, and for that simple reason I felt I wasn’t ‘sick’ enough to do this anymore. Which is frankly ridiculous. I have several conditions all of which are chronic, a couple that will continue to deteriorate as I age. My good spells generally never last longer than a Botox cycle, yet because I don’t fit into a nice stereotypical tick box of what disability should look like I felt like I couldn’t blog. I expect myself to be able to do everything that a healthy person can do, because that it is what people, I feel, expect of me from many not so subtle comments for example lose weight your joints won’t hurt as much.

Secondly, was my depression and anxiety. The anxiety and paranoia I experience partially stem from post natal depression but are largely side effects of my medication. I feared hugely that holding my hands up and saying ‘Hey, I’m trying my best but I’m struggling like crazy, I’m terrified by the deterioration I am currently experiencing in my body and I don’t know to do’ that my doctor’s would somehow read this and decide to withdraw the medication that is so vital to me and pack me off for yet more counciling. That may seem ridiculously paranoid to read but when you’ve lived years of doctors gaslighting you, undermining your very real physical symptoms, skirting around the subject of mental health is now habit (though I am on antidepressants now).

I hope that clears things up. I want to blog here more. It helps to write it down and connect with others in the same situation.


So here’s a very late Happy New Year.

Leg/foot Dystonia

Instead of working steadily down the body for my blog posts I decided today to go straight on down to the leg/foot. This may have been influenced by todays spasms. For me, I class my leg/foot spasms as one of my most debilitating symptoms as it has resulted in me being unable to walk and having to use a wheelchair. In young adults and children Dystonia in the leg/foot area can be a sign of generalised Dystonia. Whereas for older adults (usually 30+ ) it would be more likely that it would be just in that area, this is known as focal Dystonia. I used to always walk funny, often falling over, and kicking my ankles open. I would often say “my legs just won’t do what I want”, at the time it was laughed off but now I often wonder if this was the first sign of the condition.

Dystonia is currently not a curable condition, therefore treatment is focused more on managing the current symptoms as well as possible. The most effective treatment at the moment involves regular Botox injections, where the injections are given depends on the spasm. Some people find that they need a combination of medications such as muscle relaxants as well as Botox injections . Physiotherapy is thought to be of use as well in a number in a cases, this is something I am starting to try along with Botox and muscle relaxants.

 Below are two photos of my foot/leg spasms.

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