What’s in a year? A relapse, apparently.

I was determined to make it a year without a relapse of Neuromyelitis Optica. I’m not convinced at all that determination has anything to do with when my spinal cord will become inflamed, yet still, as we entered 2015 I kept checking the calendar and mentally noting the number of days I had left ‘to make it’. I attached a lot of significance to a twelve month period.

But that’s what we do isn’t it? We all dance and get drunk to welcome in the New Year, full of hope and expectation for the following 365 days. We stick candles in cakes and congratulate each other on being alive for another year. We celebrate another successful year with our spouse, in which we’ve managed not to cheat or kill eachother. We watch season change, buy chocolate eggs, bake ourselves in the 3 days of annual summer sun, count down to Christmas and bring the year to a nice neat close once we’ve got to the end of that twelve month calendar. And we mentally mark memorable dates – holidays, the day we met, the day they died, the day I was rushed into hospital because I was rapidly becoming paralysed.

I just wanted to sail past that day on the calendar, quietly raise a glass to making it through, leaving that event where it should be – 7th March 2014 – merely acknowledging it with a contented nod as it’s anniversary passed each year. But I relapsed in February.
NMO is predominantly a relapsing condition. There is a ‘monophasic’ type, meaning the affected person will only ever have one attack, even without treatment. I was told not to get my hopes up about this being the case for me as it is incredibly rare and by looking at test results and so forth I was a bad candidate for that prime position. When I found this out I googled, I found facebook groups, I tried to decipher scientific research, and I tried to pluck from the air of confusion a time period – how long I thought it would be until my first relapse. Why? Because I was trying to create some certainty for myself, to lull myself into a false sense of security at a time when I felt I had none. Because 5 years and 6 months (the time I chose for myself) didn’t seem too bad. My partner would have graduated, we’d be married, we’d have travelled. I could cope with that. Realistically there is no way of predicting when a relapse will happen – it could be months, weeks, years. I think the longest I’ve read about is eleven years between attacks, not bad going.

So when at 11 and a half months my leg started giving way every time I stood up from the sofa at my mum’s house, I chose to sit in the conservatory and smoke and laugh like an idiot. I do that when shit things happen. If I get bad news a maniacal grim will stretch across my face and as I stifle a laugh I can only think “Helen, why the fuck are you smiling?” which makes me smile even more. I did the same when my neurologist confirmed the relapse. Idiot grin. Inside I felt winded. Wounded. I couldn’t even make it a year.
Since then I’ve cycled through questions, such as
-Have I really had a relapse? It could all be in my head,
-Is my leg really that bad?
-What did I do wrong for this to happen? Too much? Too little?
-Why couldn’t I make it a year?
That magic twelve-month marker again, as though relapsing at a year and one day would feel infinitely better than doing so at eleven and a half months.

Add to this mix the medication used for relapses – high dose steroids – and my mood absolutely hit the pits. I already have a predisposition to being a miserable git, and steroids have a wonderful way of contorting my mind and pushing it into all of the darkest, dank corners of self-loathing, self-doubt, and deep unrelenting sadness. Just what you need when you should be putting your all into recovery. It’s as though someone came and draped a wet carpet over my head during the night and, weak legged and weak spirited, I had no choice but to drag the thing around. A heavy reminder of how shit I am – shit at not having relapses, shit at recovery, shit at being motivated, shit at life.
Last time, my first attack, I was high on shock. I was one of those ‘inspirational’ people, battling hard and never ceasing to smile. People told me I encouraged them, inspired them, gave them hope. If they could see me now, stuffing cake into my face to quash the steroid induced sweet cravings, all the while loathing myself for giving in, predicting my future with an uncontrollable gut and a limp, lackadaisically going through the motions of my physio exercises, staring at the beautiful snow outside wishing it would fuck off so I could go for a walk, laying on the sofa crying, refusing to take a much needed nap because ‘I will not sleep my life away – not so inspirational now, eh?

As I’ve reduced the steroids someone has kindly replaced the wet carpet with, say, a damp bath towel. And now I feel like an idiot for plummeting into the depths of depression for a week over a relatively minor relapse involving a slightly weakened leg, and for being so transfixed by ‘making it’ to a year. I’m still down. But I’m treading water (metaphorically of course).
Yesterday it was the 7th March 2015, one year on. I stuck two fingers up at the calendar, remembering that time, dates, calendars – they are all man made, socially constructed. They hold no significance, and even if they did my body couldn’t possibly understand. We live in a society obsessed with time measurement, but NMO really doesn’t give a shit about days, weeks, months. The sun will continue to rise and set as it always does, and after one of those sunrises NMO will decide to rear it’s ugly head again. I will relapse when I relapse. I will recover when I recover.


5 responses to “What’s in a year? A relapse, apparently.

  1. I made it 10 months before I relapsed. I too, had my mind set on a year relapse free. I too, spent a week depressed on the couch when it happened. Fuck nmo! October 17 2014. I’ve got 7 months to go to make one year. Here’s to hoping 🙂
    Goodluck to you!

    • It’s strange how important ‘making it’ a year seems isn’t it? Wishing you well, I hope you make it many many more sunrises without a relapse.

  2. Helen that was beautifully written and made me smile and cry, it helped me understand your maniacal smile, smoking in the conservatory and waiting hours for your mum to take you to hospital. Classic denial and just hoping that if we ignore it enough it will go away.

    I’ve spent long periods of time under a dark wet carpet with much less provocation than a relapse of NMO and I think you are doing fabulously.

    I think what it boils down to, at the end of the day, your optimism in the longer term is important to helping you move on, but mourning your losses and the rank injustice of NMO are important too. You’ve had your certainty and control ( if it did indeed exist) taken away from you, Life has thrown you callously into its blender and you just need time to figure out what you have been left with. But above all else Helen, NMO or not, I don’t know when we as a species stopped being kind to ourselves but life is horrible enough, you don’t need to add to that you have the right to feel what your are feeling , and when you feel a little mended I trust you will move on in whatever way helps you.

    BTW, probably more of a personal comment than a blog bit but have you listened to John Grant ? he does an excellent line in self loathing and recovery.

    Love you, planning a visit soon so take care.


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    • A beautifully written comment too Auntie Jo!
      I think you’re right about longer term optimism being more important. I’ve always been one for telling other people it’s perfectly fine to allow yourself to wallow for a bit when life hands you a shit deal, powering through isn’t an automatic human setting but I think we’re made to feel that it is, that it’s the honourable, strong, right thing to do. But who needs extra pressure like that when you already feel like crap? I should take my own advice more often.
      Will look up John Grant (Kirsty helpfully suggested it might be her brother 🙂 )
      Love you, speak soon xxxxxxx

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