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.
I’m mind numbingly bored of writing about MS so today I’m going to write about biscuits (cookies if you’re American)
I’m not supposed to eat biscuits as I follow a gluten free diet but I am rather partial to the humble custard cream!
I love to nibble the biscuit, exposing the yellow cream in the middle and if you’re careful, it’s possible to be rewarded with just the cream and no biscuit! In my experience, it depends on the quality of the brand whether it’s possible to do this and I’ve been frustrated many times when the cream sticks to the biscuit underneath and breaks in half!
Strangely, the bourbon biscuit doesn’t have the same appeal to me. I expect this is because the bourbon is long and thin so it’s less easy to be left with just the cream. It may just be that they don’t taste as good as a custard cream. I can take or leave the bourbon.
It often feels like MS is a series of problems that need to be solved and overcome. For example;
- I couldn’t walk well so I got a walking stick.
- I couldn’t get into the bath so I got a walk-in shower.
- I couldn’t move my feet properly so I got an automatic car.
I can cope with overcoming obstacles and consider them challenges rather than problems but what I get frustrated with is the constantly shifting horizon. It would be great to feel like a problem is solved for good rather than temporarily, until the next relapse or progression.
I recently went to Brussels as I was invited to attend a healthcare workshop. My sister came along as my carer so we combined business and pleasure!
Anyway, an incident happened to me while I was there which I can’t talk about for legal reasons (I’ve always wanted to say that!) and as a result the hotel staff were falling over themselves to make us happy.
I’ve been trying the new Chrome Extension to New Life Outlook and wanted to share it with everyone. I was asked to try it and as I’m not a naturally “techie” person I needed to recruit my 9-year-old son to explain what to do!
A Chrome Extension, as far as I can tell, is a kind of app that enhances the user experiences of, in this case, NewLifeOutlook which is an online Multiple Sclerosis (MS) community that I write regular articles for.
I was trying to install it using regular Google at first and couldn’t understand why the link wasn’t working.
“Go to Google Chrome Mum (der)” said my son which made the process much simpler!
Warning: this post contains smug gloating and self-congratulation!
This week I’ve mastered how to drive using hand controls. This has taken me years to get round to for various reasons and yesterday was the first time I drove, in my own car, without the safety net of an instructor with dual controls.
Being disabled is making me selfish. I can’t help it as everything is always about me. Is where we’re going accessible? If not, will I be able to get in and once in how easy is it to get to the loo and out again when it’s time to go home?
Then there’s the scooter; is it charged enough? Can we get it in and out of the car ok? Are there stairs where we’re going?
Long gone are the days of spontaneity, everything now has to be planned and thought about well in advance and every decision revolves around me and what I need.