Tag Archives: exacerbation

Being Ill – Not For The Faint-Hearted

fabWhat’s it this time?

A relapse? An ‘exacerbation of symptoms’? Or just the usual?

Whatever your MS nurse, neurologist or doctor calls it, you feel pretty bad.

Worse than that, you feel dreadful. Terrible. Horrible. And everything else in between.

But wait, your colleagues and friends will make you feel better:

‘Wish I was you, would love a week off work, dossing around, watching telly.’

‘A week in bed? You serious? Eaaaaasy life.’

Yeah. When you’re in fairly good health, a week off must sound like bliss. When you’re truly ill, it’s evil, and no doubt you’re wishing you’re well enough to be in work as anything is preferable to how awful you’re feeling right now.

What most people don’t realise is, being ill is extremely hard work. It’s certainly not a cushy number; my last relapse showed this only too well. I was ill. All I could do was lie on the sofa. Nice? No. The nerve pain gnawed away at my legs while the fatigue bashed my head in. Everything hurt. I couldn’t read, I couldn’t concentrate. All I could do was … lie there. Being ill.

And all the while, rushing through my head was a stream of things I couldn’t do, but had to – the laundry, the cleaning, the shopping and cooking a basic meal for myself. The latter tortured me. I could taste the boiled egg, but it took me over three hours to get up up and do it (I have one of those six-egg electric egg boilers – couldn’t find the energy to turn it on).

To be frank, I can be as guilty as the next person. I never really understood people who had the flu, until the one and only time I had it, two years ago. I literally, quite literally, could not get out of bed. It was a relapse x 10. And extremely frightening, especially as I was the only responsible adult in the house. In some ways, the mental anguish was worse than the aching limbs and complete inability to sit upright.

Someone once said to me, quite soon after my diagnosis, that you have to be strong to cope with MS, and, boy, they weren’t wrong. If you let it, it can become a full time job. Constant pain, constant fatigue, immeasurable fear of what happens next. Plus, there’s no end-point.

You know that chic trend for ‘pop-up’ this, that and the other? Shops, stalls, cafes? For me, MS is a bit like that, except not as nice. They appear one day and are gone the week after, having cashed in their pain tokens and left.

And even when you’re Not Very Ill, there’s the constant undercurrent of symptoms, most of them invisible. Going to a Port-a-Loo six times a day when there’s eight men on a site isn’t pleasant. However, lying down on a pile of plasterboard and nodding off is, so perhaps I now look for the silver lining.

I find it bizarre, at my age, that I’m coping with an endless barrage of symptoms, day in, day out, and have been doing for the last six years. I should be thinking of other things now that The Teenager is off to Uni next week – taking up Salsa (lol), learning how to make sushi, immersing myself in Yoga for Complete and Utter Beginners.

Next time someone says how cushy it is to be ill, take my advice.

Ignore them.

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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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