Ah, there you are. I wondered when you’d show your face again. Clearly we didn’t have enough fun last time. You crept up on me this time though. Not like your last sudden assault 18 months ago. This time you lingered in the shadows, teasing me with strange symptoms that left me doubting myself. But boy did you let me know about the fatigue – you took it and kicked it up a whole 20 gears, day by day, three weeks of constant headaches and migraines, blurry vision and then BAM – you saved the best for last – my balance and my walking.
Step by step. Inch by inch. It’s amazing how different the world becomes when your ability to accomplish the seemingly normal becomes a mammoth task. I struggled through half a week in work like this – hoping and hoping that we wouldn’t have an office fire drill because I had no idea how I’d make it down the stairs.
And yet I still didn’t believe I was having a relapse. I struggled with a five-minute walk to the shop, clinging to Niall’s arm like it was the only thing keeping me grounded to this world. My legs shook and shuddered under each step and I felt engulfed by pain that resembled someone tying a band around my lower spine and pelvis and squeezing until there was nothing left.
I didn’t want to accept or believe that I was really having a relapse. I didn’t want to go to A&E and when I did get there and I found myself on a trolley in tears, Niall had to beg me not to discharge myself as the realisation hit me and I just wanted to shuffle away and hide from it all – hospital made it feel all too real. This time I didn’t feel strong – I was in pain, I could barely walk and I felt so alone.
I think that’s when it actually hit me – I really have MS. I mean, I knew I had it – I’ve spent the last 18 months constantly adapting to it – but I don’t think I really ever thought I’d relapse. I hadn’t ever really allowed myself to think about what MS might really mean – my attitude has always been to deal with the symptoms as and when they hit and I still think that’s a good way to approach it. That’s not always easy though – as anyone with MS knows, there are good and bad weeks.
For me, my MS tends to go in cycles of two reasonably good weeks followed by two weeks of extreme fatigue and strange symptoms – all of which can be prolonged if I don’t take a step back and listen to my body. And in those weeks, the fear of relapsing is so real it’s hard not to be paranoid. I guess that should have been the proof I needed though – both times I’ve officially relapsed now I’ve gone from my paranoid state into one of complete denial where Niall and my parents have nearly had to drag me out the door to the hospital.
I’m told things get a bit easier, that over time you learn to trust your own body and what’s a relapse and what’s not – I hope that’s true. I suppose, for me, when I heard the words relapsing-remitting MS, I thought that meant you went back to normal between relapses and I’ve spent the last 18 months coming to terms with that not being the case.
I’ve had to learn the importance of adapting, of not fearing constant change, the importance of planning out my weeks like a military operation and the importance of not being afraid to shred up every last one of those plans when I know my body needs the rest. The good news is that living like that has got so much easier – the only time I fear it is when there’s something like a day function coming up – which explains my constant fear about staying well enough for our wedding and honeymoon this time next year.
Maybe the fact I’d struggled with symptoms so much since the first relapse is partly because my medication was never working in the first place. This relapse did come as a massive shock – but won’t they always? But accepting that I’d relapsed and facing up to that was far easier than denying it was happening and living in constant pain.
As a side note to all this, it’s amazing the way that since my MS diagnosis the sight of wheelchairs, adapted bathrooms, walking sticks and so on have filled me with a silent and unspoken fear about what my future might hold. Yet suddenly when you’re thrown into a world of actually needing them, even temporarily, that fear is no longer there in quite the same way – you just accept it and these adaptations become a lifeline and a way for you to keep getting on with your life. And isn’t that so much better than staring at the four walls and not leaving the house because you were too stubborn to even apply for your disabled parking badge and you’re genuinely afraid you won’t manage the walk from the shop back to the car without collapsing under the weight of your own body? I’m so stubborn I’ve sat at home even refusing to take painkillers – where’s the sense in that? So I’m learning. Every single day I’m learning, I’m grieving, I’m adapting and I’m accepting. And some days that will take every last drop of my strength and that’s okay because other days it won’t.
If on the tough days, the only thing you can manage is something as simple as opening the curtains to feel the light on your face or sitting outside the hospital in a wheelchair for 5 minutes with the breeze filling your lungs, then take that and just immerse yourself in that single moment and build on that.
MS was never going to be easy but it’s certainly not the end and it has certainly not all been hard – it can be so easy to forget the good bits when your body is screaming with pain. I’m 26 and I will not let this take away all the amazing moments that are yet to come. Yes, I will have to live differently to how I thought the future would look when I was 21, and there will be so many more days where all I want to do is cry about the unfairness of it all – but in between those I will be busy living and loving all the amazing moments and people in my life – when you strip back everything, that is all that ultimately matters.