Tag Archives: diagnosis

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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My MS’s First Birthday

Carly's BlogCarly is my guest blogger today – she experienced her first MS symptom at just 17 years old and was finally diagnosed at 26. She has a wonderfully positive outlook on life. Have a read, she’s inspiring:

My MS’s first birthday, 4/02/14 (although like the Queen, it has two).

I always thought I was a bit odd. Things would happen, but I didn’t feel confident telling people, and anyway, the ‘things’ would go away eventually.

I was 17 when I had my first bout of Optic Neuritis, and I felt confident that losing the sight in one eye for 6 weeks was worth mentioning. After several visits to my GP and the opticians, it was put down to a migraine, and as I was currently studying for my A-levels, it made sense that it could be stress induced. Well, made sense to other people, unbeknown to them I wasn’t keen on education and spent most of my time playing pool in the pub near school, or doing extra shifts at work.

Anyhow, that’s not to be recommended. It was a couple of years later I had lhermitte’s sign and transverse myelitis, but this was put down to trapped nerves. And I was cool with this, and that’s how my life went until 15 months ago, when aged 26, my body just gave up on me. A couple of nights in hospital, an MRI and an LP, and I had a provisional label.

MS. That sounded pretty serious. Like many people, when I thought of MS, I pictured wheelchairs, walking sticks, and older people. I worked 60 hours a week, rode a motorbike, travelled, drove 30,000 miles a year, and walked my dog twice a day. However a bit of time on the internet, and I soon realised what MS was, what it did, how it manifested its self, and that I most certainly had it.

When I finally saw my neurologist two months later, on 4th Feb 2013, I was ready for the diagnosis, and left the hospital feeling lighter than I had in ages. This didn’t last, I was soon back on the rollercoaster of emotions, but people were there for me; my MS Nurse, MS Society forums and help lines and I won that battle. I know I’ll never win the war, but that’s OK

My nurse came to see me today (though I think she really came to see Ollie, my dog). We got on to my emotional/physiological wellbeing, and I can honestly say I am the happiest I have ever been. I work 40ish hours a week, the motorbike is being sold (but that’s due to a whiplash injury), I travel, drive 20,000 miles a year and walk my dog twice a day.

Last year, pre big relapse I cycled from London to Brighton. I know I am lucky, I’m still very able bodied, but I’ve also got a new outlook on life. I’m grateful for what I’ve got. I have days where I simply cannot do anything, when I get tired I drag my left leg and dribble (yup, still single!), I struggle getting my words out, forget what I’m saying and often what I’m doing. My left leg is currently on fire and the often visited toilet has relocated to the top of Mount Everest.

But, I have wonderful family, a job (and employer) I love, the most handsome dog in the world, and a small, but perfectly formed group of friends, and I intend to enjoy it for what it is, and take each day as it comes. There is that saying, ‘life is too short’. For me, life as I know it is short, but it is still life, and for that I am grateful.

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Catching Me When I’m Falling

depressionHours, days, weeks can go by and I’m absolutely fine.

I have a good life. MS is under control (just about) and no longer scares the living daylights out of me. I sometimes struggle to remember what life was like before it.

So why do I have moments when I plunge into a deep, black depression? Just like MS, there is no way of knowing when it will strike. I can have had the best of days, life is on track and the future is looking a shade more defined than before. Then suddenly the shutters come down, blocking out the light.

This sensation is like a relapse of the mind – a sudden, catastrophic descent into despair. I’m aware it’s happening, just like physical relapses when there is a period of disconnection before the symptoms flare up, snatching control of my body away from me.

I know people with MS are more likely to experience depression, whether due to our circumstances or from our brains playing havoc with our minds. Whatever the explanation, I need to find ways to cope with this. Perhaps it’s been around since MS started but I was unable to distinguish it from the shock of the diagnosis. Now life has reached a happier plateau, maybe I can see it in unsplendid isolation.

When it happens, I want to retreat, hide myself away and wait until it passes. But life gets in the way. I have a Teenager to raise and a house to run. I have a life.

My friends and family are unfortunately becoming used to helping me pick up the pieces. They catch me and hold onto me so I don’t fall any further. They don’t try to cheer me up or tell me how much worse it could have been. They are simply there for me.

If I knew how to fix this, I would. It’s an unwelcome visitor in the new life I’m constructing for me and my little family. It lifts as suddenly as it comes. Colours burst through once more and life is shiny, exciting and vibrant again.

I am trying. I can’t retreat, but I can sit out the storm.

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