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Get that into a song!

Get that into a song!

Trigeminal Neuralgia doesn’t exactly roll off the tongue does it, although as my TN is affecting my mouth maybe it does!

Ms is a joke, not a good one that makes you laugh but a nasty one that strips you away secretly and sometimes invisibly.

When I first was introduced to Mr (or Mrs) MS it arrived in style with presents of paralysis of the face, Nystagmus, and the walking ability an 18-month-old would be happy with, or somebody after drinking 18 pints!

I am blessed, however, to react well to steroids and within a few months I was back to normal life, well sort of normal. This was 9 years ago, in fact this October will be my tenth anniversary, and then I found it hard when people would see me with a stick then later without and assume I was ‘better’ ‘oh so your better now’ was a comment that I correct so many time that I gave up and said yes. What I wanted to say was, yep I am fine apart from fatigue, pain in my head and neck, balance issues, double vision in the morning, the need to take medication for the rest of my life and all the other little and not to little niggles that I lived with (and get me started on my bladder!)

I was lucky, I really knew I was as I wasn’t in a wheel chair, I could continue with my life but this didn’t mean I was ‘better’ I will never be ‘better’ but I manage, I get on, I live life to the full which is great. However, this means that people around me, people I work with, people on the street can’t see that I am ill, don’t see me when lifting my head from my pillow is hard, they see the ‘normal’ me (to be honest I have never been called normal even before MS)

I know people will say, I should be thankful, and I am, but sometimes bloody MS takes the biscuit. Now, after being held off for quite a while, it has gifted me with Trigeminal Neuralgia. I didn’t know what it was until it arrived and please don’t ask me how to say it in polite society, it would be mumbled incoherent letters followed by a string of expletives!

Another interesting gift to live with that is almost totally invisible, comes and goes but can last for hours sometimes days and is tiresome at best but often painful. In short, it’s just a gift that keeps on giving, I just wish it wouldn’t!

i wish i could write a song for you but the topic is too serious. maybe you could have a go at a version of “your song” by elton john. the place for expletives would be the line that goes "you can (tell everybody this is your song) change the words in the brackets as you feel fit but be warned if you write it on here it will likely be censored. hope you find some relief as neuralgia is very painful. distraction can help but can’t stop the pain.