My running gear is nicely laid out, trainers at the foot of the bed, Garmin watch all charged up. My head is pounding, my legs are full of lead. I stubbornly change, lace up my runners and decide that I don’t care, that I’ve planned this run all week and I will NOT miss it. Then I catch a glimpse of myself in the mirror and I once again don’t recognise the person staring back at me. It slowly dawns on me that if I go on this run then the chances of me making it home unaided are probably nil. And so I sit and cry.
With this episode taken out of the equation, I’d felt like I was getting to grips with balancing MS and life. The more time I’ve put between myself and the winter 2014 relapse, the better my fatigue seems to be. Or is it that I’m just better at managing it? Either way, I’d felt like I’d finally gained some proper control – but then it never fails to surprise you.
A normal, busy week for someone else is enough to floor me with fatigue. In those weeks I feel like all I do is work and sleep – and I despise them. A missed lunch break in work or a couple of extra hours in the office here and there leaves me cancelling any evening or weekend plans and scrambling for the sofa. I really wish I could explain this tiredness to people. If someone had attempted to explain it to me before I’d experience it first-hand, I could never have comprehended just how extreme it is – how your eyes stop focusing correctly and just want to give up completely, how every single word you speak is carefully thought out because your speech has started to slur and you don’t want to demonstrate your ability to speak parseltongue in the office, how your legs have turned to both lead and jelly at the same time and how you have to set the alarm on your phone because you fear a simple trip to the bathroom could turn into a power nap.
And yet, despite all that, despite the constant knockbacks, I feel more in control than I have in a long time and more aware of my body, my emotions, and what’s really important in life.
I’d fallen out of love with running in the last few months. I hated the cold, I hated the way running seemed to put so much stress on my body. I hated sitting in work getting excited about going for a run that evening only to find I was too tired by the time I made it home – and I hated MS even more on the days I ignored that tiredness and pushed myself regardless. I hated that my body felt weak and I hated that I could feel that weakness so clearly on the bad days.
I decided it was time to stop pushing against this disease, it was time to really work with it. So, I’ve taken up Pilates, I’ve started getting up earlier in the morning when my energy levels are generally best and going on my crosstrainer as I find low-impact exercise places less stress on my body but still allows me to build up my cardiovascular strength. I’ve even taken up a ‘roll, relax and restore’ class that sends me off to sleep like a baby on a Monday night. Exercise means something very different to me since MS. Despite the challenges and the impossibility of following any sort of exercise routine, I’d say I’m far more in tune with my body than ever before. I’ve had some brilliant weeks in the last few months and others where I wake up and instantly know I need the extra hour in bed more than the exercise. Pre-MS Rosie would have said that was mind over matter and I’d have dragged myself up regardless. But I swiftly learned that the result of that was painful foot spasms, sluggish vision and wanting to hook myself up to a coffee drip.
I’ve a nice little routine going now. And I say routine but no two weeks are ever the same – and that’s okay. I’m okay with that. Just accepting that makes me feel more in control. Yes, I had a meltdown that morning about my run. But, if I’m being truthful, the signs weren’t great all week, I just chose to ignore them this week for the first time in a long while.
I sometimes wonder if I hadn’t been such an active person pre-MS would I have noticed exactly how much my life has changed since. But life never stands still, MS or not, and I have to adapt to the constant changes.
Control is a strange one really – it can be whatever you want it to be, it’s so self-constructed and the last few months have really taught me that. I feel more in control of my MS just by learning how to relax the amount I try to control it, by knowing how to judge my own body and how to respond best to it. I feel more in control just by accepting it when it tells me it’s time to rest and seizing the moments when it doesn’t.
I get the results of my most recent MRI tomorrow (after they rescheduled the appointment four times – I’m hoping that’s a good sign).
It’s funny, on the good days when I don’t notice my MS so much, I still keep thinking I’ll go back and maybe they’ll tell me it was all a mistake – I know how that sounds but it’s something I can’t shake. Every time they’ve given bad news, I’ve just sat there like a rabbit caught in the headlights. You never really think it’s going to be bad news, do you? I guess this will be the appointment that sets it all in concrete in my mind, the one where I’ll find out if the magical Copaxone is working. There’s been no more relapses since, but then no relapse doesn’t always mean no more damage, my last MRI showed that.
I wonder will I ever stop feeling nervous every time I receive a hospital letter? I like to think I’m pretty good at getting on with life and staying focused on the positives, but there’s something about a looming hospital appointment that fills me with dread every single time. The closer the appointment date gets, the more I dead it. Funnily, it’s also when I suddenly want to run a whole load more. I guess, in the last few years, running has become the way I cope with the tough stuff, and MS has meant that’s another area I’ve had to look at – relying on other means of coping during the days that exercise isn’t always possible. In truth, that’s the area I’ve probably struggled most with.
This week has been a tough week both physically and emotionally. But my unwavering inner positivity, even if not always evident on the outside, is what gets me through it all. The thought that today’s rest is tomorrow’s fuel. And tomorrow is always another day full of possibility because, whatever that hospital appointment may bring, I am here, I am alive and in that, for me, there is always hope.