“So, what do you do?” The question that makes my toes curl and my heart beat a little faster.
I wish I had the presence of mind, and the courage, to say;
“Well, I do many things. I write a blog, I volunteer as a ‘buddy’ providing support to those newly diagnosed with MS, I read, I research things that spark my interest, I write non-blog related pieces of creative prose and personal reflections, I spend time with my partner, and my friends and family, I participate in clinical trials and provide information for research projects, I attend regular appointments, classes and therapies, and most importantly of all, I attempt to manage a degenerative neurological condition by means of food, exercise, aromatherapy, meditation and more – but I know that what you’re really asking is “what do you do for money?”, and I’m afraid I can’t answer that right now.”
But instead I say something along the lines of, “Oh, I’m between jobs at the moment”, and the conversation turns rather awkwardly to someone or something else.
Of course, right now I can say that I’m working 16-hours a week on a trainee placement, but obviously I’d omit the “16-hours a week” part because it’s not “16-hours a week” for me. Let me explain:
Time works differently when you have MS. At least it does for me, and many others. The disease varies from person to person, which is why it’s impossible to make comparisons between PwMS, and expect everyone with MS to be able to do the same (even if they both “look able”).
Say the average “healthy” person has 14 to 16 “functional hours” in a day (that’s the hours during which you have the energy or ability to do *things*, even if you feel tired). I, on the other hand, have, say, 6 to 8 functional hours over a day, for a variety of reasons including, but not limited to; the fact that it takes more energy for someone with MS to perform a task than it does for someone without, MS-related sleep disturbances, living with chronic pain, and the fact that my body is working a lot harder to move, and read, and think – and that’s draining. (Full disclosure; these hours are not scientific in any way, I’m plucking numbers out of thin air to illustrate fatigue).
The ‘extra’ hours that you have might be the hours you use to cook dinner after work, to read a book, to continue with your creative hobby, to meet friends for a quick drink. So while I have the same 24-hour day as the rest of the world, I also don’t have the same 24-hour day as the rest of the world. When I say I don’t have the time because I’m working, and you think “but you only work 6 hours a day”, I don’t literally mean I don’t have the time. What I mean is, I don’t have the functional time. I mean, my 6 hour day at work, plus the symptom management that will need to follow my day in the office if I want to sustain employment for longer than 2 months, is going to take me to my capacity for that day, and I won’t have the energy to do much else. Physically and/or mentally. That’s MS. At least, that’s MS for me.
But wait, that’s not all.
Not only do I operate with less time to begin with, into which I’m often expected to squeeze almost as much as everyone else, despite having MS; I also have all of the extra little things I need to do on top of that, because of MS.
Things like daily Pilates and stretching to manage muscle pain, maintain muscle strength and stamina, ease off tightness and calm my mind. Like relaxation techniques and mindfulness to manage pain and mental health. Like 30 minutes of daily exercise, 5 times a week, to keep my fitness and mobility levels up. Like preparing rich and balanced meals to manage fatigue through my day at work, giving me the best chance of staying in employment. Like researching the next drug because my treatment is failing to control an annoyingly active disease-course. Like preparing for and attending regular appointments and classes and complementary therapies. So within my already depleted functional hours, I’m trying to do all of this extra stuff too. Only this extra stuff isn’t really “extra stuff”. It’s core stuff. It’s the foundation upon which my ability to work, and write, and socialise, and volunteer, is built. Stop the disease-management stuff, and the rest will stop too. These “extras” are the sandbags that keep the flood waters at bay.
So the next time you find yourself wondering why I can’t do X if I’m only doing Y beforehand, or desperate to know how someone you’ve just met earns money; Stop, drop, and roll the eff* away.
*My boyfriend told me I’m too expletive, just say the actual F-word to yourself when you read this, like the adults that you are; it flows much better.
Wonderful posts Evie. You really have a gift for writing and explaining about MS. Take care and stay safe. Jacqui Nicolson xxx
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Thank you ☺️ xx