Category Archives: Symptoms and Treatment

A Wrestler in the MS Ring

The last seven days have been interesting, if nothing else.

Each day brought a flare-up of existing MS symptoms; one day blinding fatigue (hit by an anvil), the next Bambi legs.

Then there were the dodgy hands (hello smashed crockery), the stumbling, the teeth-gnashing nerve pain, the upside-down balance issues.

As I normally do when this happens, I retreat home, batten down the hatches and conduct life from my sofa and my bed. It’s taken years of practise and I think I now have it down to a fine art. Even the cat knows what’s expected from her. She has a chair opposite my bed (with a special blanket on it) and keeps a beady eye on me and also dominates the sofa opposite mine (much to The Teenager’s chagrin when he’s home).

MS is a boxing opponent who just won’t give up. They might leave the ring for a little while, to grab an energy drink or something, ready for the next bout, then they’re striding towards you once more, when you’ve barely made it back on your feet.

And the worst thing about this? Every single one of my symptoms are virtually invisible to all but the people closest to me. If I have to explain nerve pain and fatigue one more time, I’ll scream. And if someone says, ‘but you looks so well’, I’m half-tempted to say, ‘yeah, bit fat, got MS’ and see if they shuffle away.

MS is a very lonely illness. Of course, I live alone, but still. It shoves you into the deepest, darkest corners of real life. I had to cancel meeting a friend yesterday and I was devastated. I schlepped around the house, slept three times and listened to life going on outside my window.

So, I went to work today. I know I’m lucky, working with my best friend. He picks me up in the van, coffee ready in the cup-holder. He takes me shopping and on errands. At work, he made me take ‘cool breaks’. We had a laugh and it felt wonderful to be out and about, engaging in real life, despite my legs crawling with pain. For a short while, MS didn’t matter.

I get knocked down and I get back up again as the song goes and MS truly feels like that. Each day is shaped around MS and I could let it dominate or I can work with it to make it work for me. It’s amazing what you can get done from a sofa before nodding off to sleep yet again.

There may come a time when the balance tips, I know that. But until then, I’ll take the blows and get back up again.

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Being Ill Is Fun and Other Myths …

The Boss has toothache.

Really, really, down-to-the-nerve toothache.

Excruciating.

We were chatting over coffee last week (with him wincing every time he took a sip, bless him) when he said something along the lines of:

‘You know what, I always thought it would be pretty cushy being ill. Lying on the sofa, binge-watching Netflix, eating sweets. But it’s nothing like I thought it would be.’

I haven’t been too well these last few weeks and it’s scared me; not being able to cook a proper meal, sleeping for so long every afternoon, shooting nerve pains. And that’s without the ever-growing hernia.

But he’s right. Before MS, probably like most workers, I thought a sick day was a euphemism for ‘duvet-day’. I’ve now learned the hard way that sick days are only fun when … you’re fairly healthy.

Real sick days are just that, sick days. You feel dreadful. You wake up tired, knock into everything, trip downstairs, and it’s all downhill from there.

Lying on the sofa isn’t safe, fun or secure when you realise that the only person keeping the whole show on the road is … YOU. There is no one to put the bins out, feed the cat, order shopping, clean, cook.

I’ve lost count of the times I have forfeited dinner, only to starve until The Boss picks me up in the morning with some kind of breakfast waiting for me.

As the only bill-payer in my household, the pressure to recover is immense, so there are no days in bed, no recovery time. It’s a case of getting over the worst and getting back to work.

Which I do, time and time again. Take yesterday: in the van on the way to work, I told The Boss that even though my right arm was numb, I would be fine. I ignored the shooting nerve pains and the general uncomfortable sensations in my fingers.

I got through the day with my left arm. It’s what you do, without that safety net.

The Boss will get his dental treatment. I will keep on taking my medication, and for the foreseeable future, two hour afternoon sleeps will be the norm.

A healthy sick day?

Yes, please.

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Out In The Open

I realised something quite profound the other day.

My life since the age of 13 or so has been divided neatly in half by two very different medical problems.

And not only that, one was visible (far, far too visible) and one is by and large invisible, to most people anyway.

And it is this issue of ‘visibility’ that makes me stop and think, and one which links both problems.

For over 20 years, I had incredibly bad acne. To many people, this might be a case of, ‘so what?’ But believe me when I tell you I went through absolute hell. It was difficult enough enduring it throughout school (you can only imagine), but for it to continue well into my 30’s was horrific and dominated my life entirely.

I would go to bed every night for two decades, praying I would wake up with clear skin. Very few people ever saw me without thick make-up (I tried all the foundations under the sun), but none of them could ever disguise the angry skin flaring up underneath. The more I tried, the more I failed.

I simply can’t begin to explain how my skin affected my life. My face was the first thing people saw and every time someone looked at me, a little piece of me died inside. I knew exactly what they saw, and I felt humiliated and ashamed.

And then, just as my skin cleared up, MS hit.

I wonder whether it is my experiences of hiding away, saying no to so many things (so many regrets) and generally shunning the best that life can offer that has made me so vocal about living with MS.

This time, I refuse to hide. It’s tempting, very tempting. In light of the DWP debacle, part of me is seduced by the idea of doing what they ask, shutting my front door and retiring politely from public view. And I remember exactly how that feels, from years and years of experience.

But I won’t hide and now I have the reverse problem – having to work endlessly to prove to people that I actually have a medical issue. It’s quite bizarre.

Ultimately, what can I learn from this? Am I trying to overturn my ‘mistakes’ from before? If I am, bring it on! Perhaps if social media and blogging had been around ‘back in the day’, I would have evolved into a proud ‘reclaim acne’ teenage blogger.

As it stands, visibility and medical symptoms have been the enduring story of my life. Isn’t it time we reclaimed all health issues as just that – if you’ve got an issue with it, jog on?

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And The Lump Came Too …

Phyllis The Hernia is starting to get on my nerves (which are frayed enough as it is, thanks very much MS).

As regular readers will know, I tagged along with The Boss on his recent Geneva road trip, where he gawped at a bunch of cars and took selfies of himself sitting in yet more cars at the Geneva Motor Show.

While he did that, I sat in one of the numerous cafes at the event, poking and prodding Phyllis and pretending to read through the stack of books I’d brought with me.

Luckily, The Boss was satisfied with a couple of hours wandering around miles of … cars, so we spent the other two days exploring Geneva. Just me, him and Phyllis.

I’d packed my hernia support belt (words I never ever thought I would utter in my 40’s) and tried it on. An almost metre-wide band of elastic, stretchy beige material that I was supposed to wrap around my waist.

In the comfort of the hotel bathroom, I breathed in, pulled the belt tightly around me, Velcroing myself into place. With floor to ceiling mirrors, it was easy to see how ridiculous I appeared. Sure, the pressure was great and I felt a lot better, but I looked like a semi-skinned extra-large sausage, wrapped in pastry and ready to cook.

However, and this is a definite positive, hernia belts are the new Spanx. I suddenly had a waist! With this in mind, I dressed, admiring my new figure and dismissing the ever so slight inability to breathe properly.

Anyway, I took Phyllis to have an ultrasound scan today, to see how big she had grown, before I have surgery. I duly turned up at the allotted time, having foregone coffee for hours beforehand and waited for almost an hour.

When I was finally called and had shown Phyllis to a couple of people, they looked at me sadly and told me the doctor had booked me in for the wrong scan, so I have to go back on Sunday.

I got back home, gulped down three coffees in rapid succession and cursed Phyllis. The hernia saga continues …

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We Can See You

rsvpAs it happened, the ‘dreaded PIP brown envelope’ never arrived.

It was white, innocuous, mixed in with pizza and conservatory leaflets, but I immediately knew what it was.

The DWP has invited itself to my house in less than two weeks, despite me not requesting a home visit. How … lovely.

At the appointed hour, they will assess whether I do indeed have an incurable, degenerative illness. With this hour-long meeting, they will decide my future – should I be allowed to continue to live and work in genteel poverty or should I be rendered unable to pay my bills and therefore become homeless?

I knew an assessment was coming, I just wasn’t prepared for it to be at home.

My house is my sanctuary and comfort, from everything. Every single item I have here is precious and the last thing I want is some hawk-eyed official casting their penetrating gaze over … my life?

To be honest, it will feel like an utter invasion. The last person I had here in a professional capacity was my lovely MS nurse, back in 2012, and I welcomed her in with open arms. An as-yet unnamed official (they discard such niceties when you’re ‘claiming benefits’), will be uncomfortable and invasive to say the least.

And that’s what it feels like – an intrusion into my personal space. Is there anywhere they won’t go? I have described, in excruciatingly personal detail, every area of my life. Things I wouldn’t tell my closest friends. Things I can barely come to terms with myself. Every tiny little detail of every single thing I cannot do. Or do, without wanting to.

Back in 2011, I could not know that embarking upon the MS diagnosis-journey would mean baring my soul, my brain and to top it all, my entire life. And that’s without the relapses, the gruelling treatment, its side-effects and the ongoing symptoms and medication.

Yet I have no choice. My quiet, unassuming, boring life could be ended in an instant.

And I quite like my unassuming, boring life.

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