International Trigeminal Neuralgia Awareness Day
International Trigeminal Neuralgia Awareness Day on October 7th 2013: Today is the first Trigeminal Neuralgia Awareness Day, please watch this video and sign the petition to get the World Health Organisation to add this to their ‘Health Topics’ lists to get more research and funding into this debilitating symptom: http://www.ipetitions.com/petition/trigeminal-neuralgia-awareness-day/ http://www.tnnme.com/ ©Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2013. Unauthorised use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.
Trigeminal Neuralgia Awareness Day
Tomorrow is the first Trigeminal Neuralgia Awareness Day, focused on bringing awareness about facial pain disorders. This year I have gone through severe TN attacks myself and I therefore want to spread awareness about Trigeminal Neuralgia, also called “the suicide disease” because of the severity of pain experienced. [youtube=http://www.youtube.com/watch?v=H-8PCv4UWJo&w=420&h=315] “The presumed cause of TN is a blood vessel pressing on the trigeminal nerve as it exits the brainstem. This compression can wear away the protective coating around the nerve (the myelin sheath). TN symptoms can also occur in people with Multiple Sclerosis (MS), a disease caused by the deterioration of myelin throughout the body, or may be caused by damage to the myelin sheath by compression from a tumour.
Dissecting words
“Billie… smile!” “Billie, this is a business company, not the beach!” “Oh Bee, you’re such a bad dancer!” “It must be great being on sick leave so much; it’s like being on a long holiday!” “Look at her, Monday morning and still drunk!” These sentences might just be background noise to some, but to a person with a neurological illness, those words can cut like tiny slithers of glass.
The duplicity of MS
Summer has finally arrived in Ireland. After what seemed a prolonged autumn and/or winter, we saw summer marching in as if tomorrow might never come. Seeing we are a breed of people who can endlessly talk about the weather, we find fault in it as soon as it happens, only to spin more hours of talking about it. One of the Irish newspapers printed an hour-by-hour event guide to make the most of it… after all, this is a four-seasons-in-one-day country… just in case. But not this time. Headlines like ‘Scorchio is staying put for the weekend’ and “We’ll go from hot to warm weather” fill me with dread. Please don’t get me wrong, I like the sun as much as anyone else; it’s great for catching vitamin D, for…
Pride
Take care of your body. It’s the only place you have to live. (Jim Rohn) Being unwell? For those who only have an odd cold or flu, they believe they cannot possibly feel any worse. For those who battle cancer, ‘being unwell’ becomes a triumph over adversity if their treatment is successful. I often find myself floating in between the mere feeling of the flu or the worst pain possible (trigeminal neuralgia, remember?). On days like that, my illness feels like my body betrays me, day in, day out. Unlike people who have cancer and have the possibility of having their illness ‘cured,’ the course of my multiple sclerosis can only be ‘modified.’ Therein lies the betrayal. Modified becomes a permanent word in your vocabulary. Modified. Not cured, only modified.
UNCRPD – The Right on Participation in Political and Public Life
It has been a great, uplifting two weeks. Busy, yes, but it was also about self-analysis and giving back. If I remember well – as you know my memories have a short lifespan – it was all about life with MS. I finally received meds for trigeminal neuralgia, aka the ‘suicide disease’ last week. As trigeminal goes, it is one of the most painful conditions according to medical staff. Over the past three to four months, many a thought went into on finding ways of eradicating the pain. It went as far as referring to it as ‘trigeminal blah blah blah’ because I started hating the word and all it stood for. Not often do I lose hope when I am in a lot of pain, and with a pain…
Back with a bang!
I am. In Dublin once again after a short stay with my mum. She moved houses last week but instead of having me pack boxes with her with lots of… well… you know yourself when you move houses and how much you gather in the space of about 60 years or so. I stayed in her new apartment by the marina, 5 minutes from the beach and 3 minutes from the main shopping street – my mum knows how to pick her favourite spots – so she chose wisely. And while I stayed by the marina for a week before her moving in, my mum was slaving over packing boxes in her old place, doing admin related to the move and so on. For a week I had no internet…