I’ve just finished reading “Every Note played” by Lisa Genova and am writing this through tears at the beautiful, insightful and moving portrayal of someone living with ALS.
ALS is another name for Motor Neuron Disease (MND) and I could see many parallels with MS. I have a fascination with reading about a life changing diagnosis as I can obviously relate to the characters and empathise.
I can relate to how the protagonists body began to let him down and how his initial denial led to fear and isolation. I can also empathise with how he didn’t want to confront his situation and let other people in to help him.
I’m not one to shy away from confrontation, especially when I’m in the right. There’s nothing more satisfying than coming up with the perfect, witty parting shot before flouncing or storming off!
I remember years ago when someone challenged me in a supermarket car park for daring to park in a parent and child space. I thought it strange that she was jumping up and down and pointing out the £60 fine for flouting the rules before making absolutely sure I was guilty. I calmly retrieved my infant son from the back seat before smugly stating, “get your facts straight before you speak to me” and flouncing off.
It’s much harder to achieve when you’re disabled though and rely on other people to help you!
I haven’t written much here for a while and that’s mainly because I’m worried. Actually, that’s an understatement; I’m terrified to the point of tears when I think about what’s to come.
I have to have an operation. It’s a routine, gynaecological procedure that’s common in women but this does nothing to make me feel better.
I write monthly articles for the wonderful, online community, New Life Outlook. https://ms.newlifeoutlook.com/
It occurred to me that readers of this blog might not have read these articles so I’m going to share them here once they’re published.
My latest article is on the dreaded self-catheterisation! Click on the link below to read part 1 and browse other MS articles on the site.
Let me know what you think.
I’ve been on leave from work this week and what I notice most is the impact on my “cog fog”. Cognitive fatigue is an invisible symptom of MS but can be as disabling as the obvious physical disabilities I have. It often leaves me unable to hold a thought in my head or string a sentence together, making conversation an uphill slog.
I work part time in a demanding role that sometimes leaves my brain in tatters! I have a caseload of chaotic people, many of whom have issues with substance misuse and mental health so whilst I find it challenging and rewarding I also find supporting them zaps my cognitive abilities.
Is it me or is going on holiday with MS exhausting and traumatic?
All the advice on websites and social media states that planning is the key and we can all have an enjoyable, stress free holiday as long as we spend months thinking through every detail. I always plan my trips within an inch of their lives but this year I’ve still been caught out and feel I need a week alone in a dark room to recover!
Why do holiday companies advertise their accommodation as “fully accessible” when what they really mean is, “we’ve ticked a few boxes so hopefully you can manage”
How do you write a tribute to someone you’ve never met or even spoken to? Some people have an impact on you even in the virtual world of social media and I feel moved enough to write to him now.
I first came across you a few years ago when I bumped into your wife on twitter. She read my ramblings about MS with interest and would often comment and share experiences of her own. She’d been caring for you for over 20 years since your diagnosis of Primary Progressive Multiple Sclerosis (PPMS)
She shared your struggle and pain but communicated an overwhelming love and humour which demonstrated how you both coped with MS together.
It sounds so corny and lame but it was obvious how highly she regarded you.