I awoke with the best intentions for my day this morning. No, that’s a lie; I awoke with a foggy mind and even foggier vision, but after an hour of dozing, hydrating, and a gradual incline to sitting position, as my body began to remember how to vaguely function and my vision cleared, I formed my intentions for the day ahead:
“Go for a swim, pick up lunch, tidy the kitchen, have a look at wedding plans.”
Minutes, or hours, or days, later (I’ve decided to stop paying attention to the passage of time – it stresses me out for no apparent reason other than the learned belief that certain things must be accomplished within a certain time-frame, or at a particular time of day) I find myself lying on the sofa clad in a swimming costume, and a swimming costume alone, having not quite mustered the energy to pull on a pair of jeans. My lower legs are frozen solid, but I do not care – my cotton-wool brain is only vaguely aware of the discomfort and has no intention of attempting to rectify the situation, not even by reaching for the blanket that lies mere centimetres from me. I’ll do it in a minute. OK, another minute.
I internally chastise myself as I lie there, naturally, and once the rebuking is done, the reasoning begins; “you were out yesterday, you’re still recovering from the cold you had last week, you’ve had a busy spell, the cold weather makes your symptoms worse, you have multiple sclerosis.”
It’s that last one that carries no real meaning.
It is difficult for me to rationalise not being able to do as much as I could, say, five years ago, as a result of the illness I have lived with for the past twelve. If I had MS then, and I still have MS now, I should be able to do the same stuff?! I’m not sure if I’ll ever be able to truly accept the slow, insidious nature of progression – I’m not sure if the human mind is even capable of such a feat. I have not been in a catastrophic accident, nor experienced a big relapse – there has been no tangible event for my mind to attach my less-able body to, making it all the more difficult to acknowledge. I still look the same on the outside, I still feel the same in many ways, so maybe it’s all in my head? Maybe I’m simply not trying as hard as I used to?
So my inner demon would have me believe.
I am unrelenting in my attempts to “pass” as nondisabled, and in my comparisons of myself to others – with or without MS. I am almost ashamed that my outer shell (young, slim, healthy-looking) does not marry with how I present when I use mobility aids, or walk slowly, or stop, or sit, or stumble. I feel like I have entered a limbo-land stage. A grey area between “mildly impaired” and “more impaired”. When using a mobility aid, or requiring assistance, is a matter of choice more than absolute necessity.
I spend my life ping-ponging between; “you’re a fraud. Just fight harder. You don’t really need that”, and, “so you’re just not going to leave the house for a week instead of making an outing easier for yourself?”
And despite now shouting about chronic fatigue online, I perpetually expect more from myself than I’m capable of; overestimating my ability day after day, week after week, month after month. “I used to do X, Y, and Z, so I should be able to do at least X and Y.” Note to self: all of MS is progressive, not just the physical part.
And if I can’t get my own affected brain around the reality of gradual progression; around the fluctuations and slightly-worses and takes-more-energy-than-it-once-dids, how can I ever expect anyone else to?
Multiple sclerosis isn’t a straight route with set stops along the way:
“calling at: “Walking Stick Central”, “Crutch Park”, “Manual Wheelchair City – change here for the bus link to Catheter Cathedral”, “Electric Wheelchair Way”.
No, it’s far less linear than that. (And, fortunately, far less pre-determined).
Instead it creeps along, slowly – so slowly, in fact, that it can go unobserved for years, until one day you look behind you and realise it was moving, however imperceptibly, for longer than you thought. And the road isn’t straight either – it’s winding; full of pauses and rests, with the occasional U-turn and the odd brief detour back to a spot you last passed two years ago.
It seems that my black or white thinking struggles to accept these shades of grey, and leaves me overthinking every single decision to use or not to use a walking stick, to hire or not to hire a wheelchair, to push through and wind up snapping at everyone, or to “concede” and be pleasant company? Sometimes my legs make the decision for me – weirdly, I actually appreciate those days.
Take Saturday, for example. My partner and I had tickets to watch Scotland play Japan in the Autumn Internationals at Murrayfield Stadium. The last time we attended a rugby match at Murrayfield we were seated up in the heavens; steep concrete step after steep concrete step, and horrendously placed for any leg movement at all. We left at half-time, with painful spasms and a fear of the full-time crowds forcing our hand. So this time we asked for accessible seats, much to my chagrin as I thought “accessible seats” equalled “wheelchair access”, and felt like a fraud. (Black or white overthinking, remember).
Turns out Murrayfield Stadium aren’t as inflexible with their definition of disability as I am. Here is the definition of “accessible seats” taken from their website (separate from the wheelchair-accessible tickets): “Accessible seating: seats for spectators who require easy-access seating. This is particularly for spectators who can either walk short distances or can be assisted to their section with support from our stadium coordinators. These are located throughout the stadium.”
And so my partner pushed my Roll Motion 2-in-1 rollator (with me in it) from the car park to our seats. I walked up the steps and sat down, with Rollz safely stored until I needed him again. And at no point was I ever made to feel like I was pulling off the greatest scam of all time.
So thank you, Murrayfield Stadium, for acknowledging the shades of grey, and for reinforcing my courage to acknowledge them too.