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?