Tag Archives: relapse

Commiserations and Celebrations …

listeningThis post is a very big thank you to everyone.

I’ve been going through my own personal relapse hell these last few months and it’s thanks to you guys for keeping me sane; here and on Twitter.

Meeting with my MS nurse yesterday just showed me how important it is to be listened to, both by the MS professionals and my MS peers.

You haven’t shirked from my odd symptoms, you’ve sympathised with my sofa-bound enforcement. You’ve cheered me up and empathised when times were hard.

In a way, I’ve made sense of this relapse thanks to you. Each post I’ve written during this time has given me the most insightful comments, a lot of which I took to yesterday’s appointment.

MS for me is isolating and lonely. Get the violins out, but there is no Significant Other. No one to pick up the pieces, to cook dinner or flick a duster around. So the camaraderie I gain from you means the absolute world to me.

The knowledge that no one has to go through a relapse alone is empowering and comforting.

I hope you all know just how much this means to me.

Thank you.

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Going Round In Circles

circles When I’m experiencing them, I’m never quite sure if a sudden surge in MS symptoms is a relapse or not.

I only get the definitive answer when I wake up one morning (days, weeks, months after) and I just know it’s over – it’s kind of a retrospective thing.

Today, hallelujah, is one of those days. The murky fog has cleared, my energy is restored to its usual low level and the world seems a much brighter place. I look back over the last couple of weeks and realise just how awful things were.

To begin with, I ignored the numbness down my right side, the dodgy tingling hand, the weak arm. Then came the beyond-out-of-proportion tiredness and jelly-brain. As is usual with a relapse, my world shrank. I did the bare minimum and I did it badly. Work was a nightmare (Boss not happy) and when I got home I slept (Teenager not happy), woke up and barely moved from my sofa.

After that came the symptom that left me stunned – my body seemed to want to pull to the right, so walking in a straight line was a bit tricky. I ended up turning right an awful lot, so much so that I might as well have been walking in circles. I slammed into walls, fell with a thud into my washing machine and tripped down five stairs, ending up lying dazed on the floor, squished between the bottom stair and my bureau, finding a long-lost catnip ball in the process.

The most worrying episode was when I was in the shower the other day. Again, my body wanted to jerk to the right. Unfortunately this meant I fell out of the shower and cracked my head against the toilet. As I was lying there, I was ever so grateful I hadn’t knocked myself out as the thought of paramedics finding me naked on the floor, crying and trying to cover up with a single flannel was unbearable.

After counting the cobwebs on the ceiling and noting the gaps in the silicone seal around the shower screen, I staggered to my feet, put my dressing gown on and sulked on the sofa for the rest of the day. Again.

So it’s over, for now; I’m back to the baseline, which seems to rise with every relapse. Whereas before I fretted about every tiny symptom, diligently jotting them down in my ‘MS Symptom’ book (one from 2013 – ‘my nose seems to itch more and swallowing is a bit of an issue’), I now have a much more ‘yeah, yeah’ attitude. It’s about accepting it and living day to day.

I can say that now. If you’d asked me last week however, I’d have given you a withering look and sighed.

Progress?

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Been there, done that …

gutterAs I was lying sprawled on the gravel at work, still holding two (thankfully empty) coffee cups, I promised myself, ‘this time, it’ll be different.’

Rewind a day or so and the first inkling something wasn’t quite right came when I floated away.

I hate that feeling. I’m here, but not quite. It’s my relapse calling-card.

My hands played up, a grabbing-arcade-machine-gone-awol. I misjudged my steps, I tripped countless times and scuffed my brand new shoes. I was exhausted beyond belief. On Saturday, I literally could not get up off the sofa from 2pm til 9pm, despite all my efforts.

I was gripped by fear – fear that The Teenager would notice, fear that I couldn’t function, fear that I was immobile and couldn’t do a thing about it. So I lay there, invisible threads of absolute fatigue snapping into place all around me.

Late that evening, I finally managed to crawl into bed and collapsed.

Relapses, a spike in symptoms, an exacerbation, a blip, whatever it is when it comes to MS, whatever it’s termed, it’s dire and we don’t always need an MRI to prove it, although in my case they usually do.

I had a pocket of energy after work the other day, so ploughed my way through three lots of laundry, laid bark in the garden and cooked up a massive batch of chicken. I cleaned the kitchen, vacuumed the house, fed the cat, placed a food order, caught up with paperwork. I was dying inside but there was no alternative. After that, I collapsed.

I’ve learned to get one step ahead of a relapse. I hate being inactive on the sofa ( I hate my sofa so much it’s unreal). But I know it has to happen, no matter how much it kills me. I think if I can do everything possible, I will guarantee I’ll be able cope if something even worse happens in the next few days. It’s the ‘Single Parent With MS’ Dilemma. But at least the laundry’s done, and the t-shirt that makes The Teenager’s muscles really stand out is fresh and ready to wear. It’s priorities.

Back to the gravel. I lay stunned. The boss shouted down to me from the roof he was working from. My body had taken a huge whack and the pain was immense.

I had to get up. And you know what? I did. And for that I will be forever grateful as not all of us with MS could say that. So, as long as I’m able, I will treat relapses with the contempt they deserve.

Been there, done that …

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Pre-Relapse Stress Syndrome

worryAnyone else have Pre-Relapse Stress Syndrome?

After a rocky road back to some sense of recovery following my third course of Alemtuzumab in September, I am once more mired in my usual emotional mode – worrying about when the next MS relapse will strike.

Considering my last relapse began next to the hot-dog-and-fries stand in Ikea, I have reason to worry.

One minute I was holding a well-thumbed Ikea catalogue in one hand and a hot-dog in the other when splat, I was catapulted into outer MS space, floating around, my legs turned to jelly, my brain to mush.

I dropped the catalogue, but managed to hold on to the hot dog as I tried to tell my mum something was very, very wrong and it had nothing to do with the ketchup pump being out of order.

I don’t know why I was so surprised. I’ve had relapses start in random places before – walking up a garden path, sitting in a cafe eating a slice of carrot cake, in the middle of a book shop.

And there’s where the stress lies; it’s the Not Knowing. You can’t make a contingency plan. It’s a bit like having an MS UFO permanently hovering around just waiting to zap you up, mess around with you and spit you back out again.

I try to get on with normal life – my usual routine provides the solid framework I cling to. If there’s something I begin to struggle with, I’m suddenly alert. Dropped a cup? Poured boiling water over my hand? Walked into a wall? (hello again).

It’s not a great way to live, but it brings me back to mindfulness I wrote about in my last blog post – taking and experiencing life as it comes. Not projecting forward, just remaining in the moment. Om.

It’s definitely harder than it sounds. The slightest thing and I’m panicking. The relief when an episode comes to nothing is immense.

As it goes, I haven’t been back to Ikea since February. The trauma is still raw.

But. I could really, really do with ordering a family-sized hot-dog meal and eating it all by myself.

I blame the thyroid meds.

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You’re Back In The Room …

RelapseI was in the van with The Boss last Friday, nattering away about my new devotion to chia seeds and almond flour, when, blam, there I was.

I gulped, slightly surprised, then said,

‘I’m back! I’m really … here. Wow.’

The Boss rolled his eyes. ‘You never went away. Believe me.’

‘No, really, I just know, I know, this relapse or whatever it was, it’s just suddenly gone.’

‘What, so can like, do some proper work now? And what the heck are chia seeds anyway? Actually, don’t answer that.’

It’s impossible to describe the sensation a relapse brings with it. Not just the usual problems, the tiredness, the wading through cotton wool soaked in treacle. It’s the disconnection, the sense of otherness. The sensation of being apart from people. It’s lonely.

For two weeks I’ve simply been focused on getting through the days. And this time around, I made sure I was still out and about, no matter how airy-fairy I may have seemed to everyone else. Please excuse my feet, dodgy hands, the slightly glazed expression.

For me, relapses descend quickly. I know the warning signs – the buzzy head, fuzzy brain and wuzzy feelings in my body. And just as quickly, they leave. Although they always leave behind some extra little symptom I never really had before. And the usual suspects remain.

I remember asking an MS nurse all those years ago, ‘but how will I know I’m having a relapse?’

She replied, ‘Oh, you’ll know.’

And she was right. Just like when I asked my midwife how I would know I was in labour. After she stopped laughing, I kind of got the feeling, yup, I’d know. She was right, too.

Anyway, the end of a relapse brings a certain clarity. The fog lifts and I realise just how much I’ve let slide. Which is fine. Life still goes on, despite it all. My mum very kindly disposed of the pigeon my cat wrestled home one morning and has brought me pesto salads and boxes of onion-y things to chomp on when I’m too tired to cook.

The Teenager gets his exam results and turns 16 next week, so the timing couldn’t be better. I tried to arrange a birthday meal with him the other day (having booked the day off work). I got a text back, ‘Can fit you in for brunch, 10.30 to 11.15. Any good?’

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