Tag Archives: diagnosis

The Secret Diary of Stumbling, Age 37 and 3/4

secret diaryI flicked through my MS diary the other day.

Looking back over the heavily-scribbled (and, yes, tear/coffee/wine-stained) pages, it charts my confusion, fear and ignominious entry into a whole new world, complete with a seemingly impenetrable language all of it’s own.

Trusted health websites always advise you to document everything, from the very first inkling that something is wrong – comes in handy for meeting with a Consultant who may just allocate you seven minutes (including an awkward silence when fumbling taking shoes off – will he notice my holey, mismatched socks?), if you’re lucky. And they may  bark random, medically-sounding words at you.

So I did. A bit like swotting up for appearing on Mastermind, with specialist-subject questions fired every 18 seconds. I failed. Miserably. I was sent home with a leaflet about MS fatigue and the MS relapse telephone number. But I didn’t have MS? Confused? Me too. I didn’t understand the ‘multiple’ in multiple sclerosis. D’oh.

One of my first entries, back in June 2011 is, ‘why am I so hot?? Mum thinks it could be an early menopause, grrrrr. Noooooooooo!!!’ Ha! Looking back, that would have been the least of my worries, Tena Lady adventures to one side. And anyhow, I was quite enjoying the flushed-milkmaid visage I seemed to be rocking, after years of hovering just above the ‘palest of the pale Celtic face look’, i.e. close to corpse-like. Or Twilight.

Quite suddenly though, the language gets more technical- I have oligoclonal bands in my CSF, I have lesions in the subcortical, periventricular and deep white matter suggestive of demyelination. I am diagnosed with CIS. Nope, no idea.

According to my diary, I called the MS nurse later that month to ask about the MS hug, an excruciating tightening around my ribs. Normal. What about not being able to write properly? Normal. Pins and needles? Normal. Foot drop. Yup, you’ve guessed it. Over the next few months, I moved from CIS to possible to probable MS, as if I were on an evil, unstoppable conveyor belt.

I called the MS nurse again. Electric shocks in my neck? Normal. Falling over? Normal. Slurred speech? Normal. Stabbing pains? Normal. Wouldn’t it be great to have a pain that wasn’t connected to MS?

May 2012. My last relapse. My hands. Of all things. Crockery was smashed left, right and centre, my mum bought me plastic tumblers and my friends had enormous fun cheering me as I dropped things without warning. And all along, the excruciating, tedious, soul-destroying fatigue.

Late May 2012. Diagnosed. At last. An absolute dichotomy. Utter relief mixed with utter terror. The diary’s closed now. I keep my new notes elsewhere. Thanks to cog-fog though, I haven’t a clue where they are…

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Is It Time For An Update?

image makeoverJust out of interest and because I’ve been bored in work recently (sorry, boss), I’ve been asking people what MS conjures up in their minds.

My random and unscientific survey threw up some depressing results; according to my motley panel of vox-poppers, MS is:

  • An older person’s illness
  • An illness that means you have to give up work as soon as you’re diagnosed
  • An illness with no treatment
  • An illness that will propel you into a wheelchair soon after diagnosis
  • An illness that absolutely everyone has a story about, normally, ‘oh my auntie/great-grandad/batty neighbour had that, dreadful it was. How they suffered’ (sad face)

It seems MS has a serious image problem.

When I tell them MS is the most common neurological illness in young people and is generally diagnosed between the ages of 20 and 40, they’re astounded and/or disbelieving.

So what’s going on? Is it that we’ve made astonishing progress over the last 30 years, but the image remains the same? Take my dad for example. He was diagnosed at the age of 28 and died at 35 in 1978 from complications arising from his MS. There was no treatment and he was sent home with a walking stick and back then, MS was even referred to as ‘creeping paralysis’.

Five years later, in 1983, the MS Society gave a £1 million research grant for the purchase of the first MRI scanner in the world to be solely dedicated to MS research, changing the way MS is diagnosed.

A decade later, in 1993, the first three MS specialist nursing posts were created. Today, there are 270 MS nurses in the UK. In the same year, interferon beta-1b was the first drug to ever be approved for the treatment of MS. There are currently 10 licensed disease modifying drugs and 8 more are in the pipeline.

Is it simply that MS is mostly an ‘invisible’ illness, only making itself apparent to everyone else at it’s more serious stages? What is the true picture of MS? Is it time to re-brand MS?

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Don’t Call Me, I’ll Call You…

Best FriendsI really have messed up.

I called a couple of friends over the last few days and without fail, they’ve said to me, ‘must dash!’.

I don’t blame them. I’m a terrible, awful friend.

I have been selfish, self-occupied and…..boring. I bore myself. So what hope do my friends have?

I love my friends but possibly I have called upon one too many favours. And what do they have in return? Nothing but a whingeing, boring peep, with MS her only conversation.

It wasn’t meant to be like this. I was supposed to be the living embodiment of ‘living well despite MS.’ So what happened?

Who knows. I think I am still the engaged, interested person I always was, but recent experience has shown me I really am not. Am I so used to MS now, it has become second nature? Is it me? Am I MS?

A depressing thought. But I guess not entirely surprising. I try to imagine myself if the roles were reversed. Could I be that patient, that understanding? For almost two years?

I love my friends. The thought of losing them is too terrible to bear. I have already lost so many since The Diagnosis.

I realised recently that I’m never invited out for lunch or coffee. Or, heaven forbid, a night out. I must have turned down so many invitations I’ve lost count. Friends have given up. ‘Nah, don’t bother asking Stumbling, she’ll only say no……’

I find myself in the position of calling friends and (begging just a little), ‘um. yeah, hi! Fancy getting together? Yeah, me! Um, ok, no worries……catch up soon, yeah (please)?’

Hmmm. My friends have been superstars. It’s me who is at fault. I. Am. Boring.

This is why I plan to take up the saxaphone this year. And why I have joined a friend’s book club (forget the first planned meeting, a disaster thanks to The Teenager).

To all the friends who have stuck by me, thank you.

x

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A Double Diagnosis?

HypochondriacAs if having the label of MS slapped on you isn’t bad enough, there’s another sneaky diagnosis that creeps up alongside it.

That of the well-meaning hypochondriac.

I never really worried about my health in those halcyon pre-MS days.

My body did what I told it to do, when I told it to. I had the usual sniffles and aches, just like anyone else. I even used to boast how strong my immune system must be as I rarely took a sick-day off work.

How times have changed. It probably all started after the first Official Relapse. I was urged to keep a symptom diary, noting down anything unusual or out of the ordinary. For the first time in my life, I was closely observing my body. Every single teeny-weeny symptom was duly logged and dated.

At the following appointment with the neurologist, he asked me about any recent symptoms. I took a deep breath and read through my list. Ten minutes later, with the neurologist no doubt planning his grocery list or clocking the cracks in the ceiling, I finished with ‘oh, and my nose sometimes twitches AND my eyelid does too. Weird, huh?’

In short, am I well on my way to becoming a full-blown hypochondriac? Not that I pester the medical staff or take up endless appointments. I am reluctant to ‘bother anyone’. I keep my anxiety to myself. But it’s awfully tiring. Or is that the MS fatigue?

It’s very difficult to differentiate between MS and non-MS symptoms. Some non-MS illnesses are made worse by MS, or at least, not helped. And am I more tired than usual because of work or because of MS? I could tie myself up in knots, if I had the energy.

I think the problem is that a lot of us with MS live with the knowledge that we are only as good as our last relapse. We scan the horizon, waiting for the next bunch of symptoms to ride over the hill.

And speaking of over the hill, I probably need to remind myself that I have indeed reached the milestone age of 40. The age when bits don’t work quite as well as they should. When we nod off in front of the telly. When we get creaky joints.

Must dash (stumble). The tip of my finger has just gone numb, perhaps I’d better jot it down…..

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For The Last Time….

The TeenagerMany moons ago when I held my colicky, screaming baby in my arms, a visitor smiled indulgently at me, took another sip of their tea and said, ‘Ahhh, make the most of it, they grow up so fast.’

I glared at them through glazed and dull eyes. Oh really. Infinity stretched ahead of me, filled with nappies, screaming, cabbage leaves (don’t ask) and snatched sleep.

Fourteen years down the line, I now know what they mean. The years whizzed by. I visited a five-day old baby last week and was just about to say, ‘Ahh, make the most of it….’ but I held my tongue. Instead, I stared in awe at the tiny bundle, stunned that The Teenager had once been that size.

I remember all the firsts. The first step (far, far too soon), the first word (‘food’), the first day at nursery, at primary, at secondary. The first time he stayed over at a friend’s house. The first time he made a lego kit by himself.

The sadness is, I never knew when the endings would be. The last time he held my hand crossing the road, or the last time he wanted a colouring-in book. We don’t know until time passes and we realise they took place some time ago.

Excuse me for being a touch maudlin. I guess I’m just a bit angry that a lot of  ‘last times’ took place during the turmoil of the MS diagnosis. Whether I liked it or not, The Teenager had to come to terms with a parent who has a long-term illness and with his dad living 140 miles away.

Don’t get me wrong, I never put an unacceptable responsibility on too-young shoulders. I strove to maintain our normal routine, even when it was beyond-exhausting. But inevitably life changed, and so suddenly. Gone was the parent with boundless energy, who would go on long day trips, packing the car up and heading off. Gone was the spontaneity, the feeling that yeah, we can do that, why not?

Instead, life was filled with, ‘not now’, ‘maybe tomorrow’. I’ve never lost sight of him though. He is central in everything I do, hence the Campath treatment. Who cares about the potential side effects when it can keep me on my feet?

Perhaps instead of thinking remorsefully about the ‘last times’, I should concentrate on the new experiences The Teenager has. The new ‘firsts’. First razor, first girlfriend, first rain-sodden festival he goes to. Hang on, did I just say first girlfriend? Hmmm…..

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