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

Posts tagged ‘Meige Syndome’

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.

Blepharospasm

Blepharospasm is a type of Dystonia that affects the eyes. These spasms are often rather painful and can involve the eyelids as well as the muscles behind and around the eyes. As with all types of Dystonia people experience different types of spasms, some people have increased sensitivity to light and rapid blinking, whilst others find their eyes spasm shut, and in some cases the muscles behind the eyes pull the eyes up into the head making the person functionally blind. I experience several of these spasms and find that the sensitivity to light often triggers the other spasms.

Generally speaking symptoms usually appear in people around the ages of 50 to 70. However it does affect younger people, Blepharospasm can appear on its own or in conjunction with or part of other Dystonias such as Meige Syndrome or Generalized Dystonia. Blepharospasm is thought to affect around 7,000 adults in the UK.

There is currently no known cure for Dystonia. Treatment for Blepharospasm normally involves regular Botox injections. I find that six weekly injections around my eyes helps with symptoms such as spasming shut and rapid blinking, but the muscles behind the eyes cannot be injected. By wearing dark sunglasses in the sunlight or in brightly lit area, I can reduce the chances of going blind but it still happens. The longest this has ever happened for is 15 hours. Some people find that pressure points around the temples, and nose area can help relieve the spasms. Obviously these pressure points differ from person to person.

In the picture below you can see my eyes pulled back in a spasm leaving me functionally blind.

as

The Dystonia Society’s website has some great tips on how to cope with the condition so head on over to it to find out more http://www.dystonia.org.uk/index.php/about-dystonia/types-of-dystonia/eye-dystonia-

Tag Cloud