There is one thing I am sure of.
MS can and does leap out at any time, ruining plans, stopping me from working, pushing me back into bed or tripping me up, amongst many other scenarios.
Its unpredictability is an absolute given.
I was thinking about this today when I was in work, leaning (swaying) on a long-handled brush, surveying our latest building project.
I was wobbly on my feet, and as The Boss had slept in, I was also Costa-coffee-less. It was one of those days where nothing went right and we all got an early pass home.
I’m fortunate that The Boss is my best friend, and understands the ebbs and flows of MS like no one else; I work when I can, for as long as I’m able to. I can excuse myself, take time out and work at my own pace, depending upon MS’s unpredictability. I could never find a job to match it.
My work not only gives me a movable-structure, it also ensures I’m still able to pay my bills, get out into the world and feel an immense amount of satisfaction when I get home and know that I’m keeping my whole show on the road, despite everything.
It’s the same with my studies. So many people are surprised when I tell them I’m taking a PhD. I try to explain that it provides a huge amount of structure in a wholly uncertain world. I need it. It’s a framework of sorts. I’ve worked out what to read, and I read and make simple notes as and when I can. Five minutes here, an hour there. It might take me a few more years than I had initially planned, but I will get there as I have a mighty weapon.
Thanks to Disability Student Allowance, I have access to an entire team of helpers – tech support, study support, note-takers and many more people behind the scenes. When I graduate, my ‘thank-you’ speech will take a long time.
Back to that brush; nothing is certain in life and MS magnifies that. But by factoring in some certainties, I feel more tethered to all the things that are important and keep me grounded. This begins with a tight circle of family and friends and then extends outwards, encompassing studies, goals and dreams.
Without this structure, MS would win and I would be at its beck and call. It would be so easy to succumb to and its something I fight against every day. I pay for it though and I wonder how long I can push myself, yet in the grand scheme of things, don’t we all think this?
Bravo! So interesting thoughts, so nicely formulated, so good to read!
A really lovely comment, thank you! X
I’m off work today…sick leave….definitely MS related. I phoned in and
explained the reason for my absence to my …line
manager …who proceeded to ask me for the exact nature of my symptoms and then asked about the progress of some work I’m working on. On the latter, if they’d any real knowledge of how I should approach the task, using the guidelines I’m given……maybe that’s the problem🤔 it would be a good start for both of us, LET ALONE THEIR AWARENESS OF THE FICKLENESS OF MS.
P.s I 2nd Sotiria’s comment.
That sounds ghastly. My last job was very similar and I thank the heavens life is so much easier working for my friend. Maybe your manager should go on a disability awareness course … Hope you feel better very soon. X
Thanks for your feedback. I feel that the Disability Discrimination Act can be a tick box exercise for some employers (can’t be too sure of the percentages or how it’s evaluated/analysed/audited or …..? I think I read somewhere that employers are going to have to be more proactive in supporting their employees by encouraging an employee in the first instance with their application reasonable adjustments. From personal experience it has been quite a daunting decade. In the big scheme of things I am employed by the Civil Service and there are various ways that I DO feel supported. I concur with you comment Re:
my manager and the Disability Awareness Course. TBC
Hi -I would say, if you have a Union rep, get in touch with them. If not, call the legal disability helping at the MS society. x