Monthly Archives: February 2014

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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Teenage Tantrums…

Raising a teenagerOur little house is in a state of uproar.

To begin with, I trusted The Teenager to go to the hairdresser on his own.

He’s fond of the woman who cuts his hair and he’s partial to the lollipops (meant for the little kids, not six foot 14 year old’s), so I thought I’d leave him to it.

Off he went. Within half an hour, a photo pinged to my phone. A selfie of The Teenager, pretty much bald. And I paid a tenner for the privilege.

Then Parent’s Evening. Or rather, lack of it. After last year’s disaster (a complete and utter bun-fight), I asked him to kindly request that his teachers email me their reports. MS heat intolerance and unsteadiness on my feet make it nigh on impossible to queue-hop and use my elbows effectively.

I waited. And waited. ‘Oi, you’re teachers haven’t emailed me yet.’

‘Oh, computer servers must be down (rolls eyes) you know what it’s like.’

‘Hmmm.’

I waited some more.

‘Oh, there’s a terrible bug going round. Like, no one’s in school. Hoooooonestly.’

‘Hmm.’

I called the school. ‘Oh yes, you are the mother of The Teenager?’

‘Um, yes.’

‘Ahhhh.’

‘Oh.’

‘Yes. We have a few, well, issues.’

I explained what I thought I had organised. ‘Hah! (foolish parent). Anyway, an email was sent out to all the teachers, asking them to get in touch with their thoughts about my son.

Let’s just say it wasn’t pleasant. When he got home from school that day, I brandished a wad of printed off emails at him and demanded answers.

‘All the teachers hate me. S’not my fault.’

‘Why has one teacher said ‘he appreciates the difficulties with regards The Teenager attending after school training?’ You live a couple of hundred metres from the school. What’re you saying??’

(furtive, shifty look) ‘Dunno.’

Anyway, to cut a fraught story short, I reminded him that I did not spend an entire Sunday putting together a flat-pack desk from Ikea, just for him to put his telly on it. And the lovely little lamp I got him. Or the executive chair.

‘And why are you answering your teachers back?’

‘Dunno. They said I wouldn’t get any qualifications so I asked to see theirs.’

I was a girly swot in school. I have no idea where he gets this attitude from. What annoys me is that he can do it if he puts his mind to it. We had The Discussion. About how he was throwing away his future.

‘I’m not! Alan Sugar started off selling stuff from the back of his car.’. Give me strength.

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Harnessing The Vortex

vortexVortex: a place or situation regarded as drawing into its center all that surrounds it.

My previous post provoked an interesting discussion.

Is the mind, and how it reacts, our most powerful and potentially damaging MS symptom?

Thinking about Viktor Frankl’s book ‘Man’s Search For Meaning’, perhaps it is. Suffering the most appalling, inhumane abuse in a concentration camp during World War II, Frankl chronicled his experiences which led him to discover the importance of finding meaning in all forms of existence, even the most sordid ones, and so a reason to continue living.

He noted that fellow prisoners who concentrated on what they had lost fared the worst; the ones who concentrated on the here and now, despite the horrors of their daily existence, survived. Even in the most absurd, painful, and dehumanized situation, life has potential meaning.

I am using an extreme example here for a reason. Our ‘suffering’ is relative to our life situation. MS is for most of us disruptive, unplanned and unwelcome. It can be a vortex of fear and misery. Our minds gallop away with us, far beyond the actual physical symptoms we may be experiencing.

Hence my blind panic when a new symptom reared it’s head last week. Rather than placing it in context, my mind immediately concentrated on loss. On suffering. On the ‘what if’ scenario. I made myself miserable. My mind’s interpretation of this symptom was far more damaging than the symptom itself.

Perhaps, rather than concentrating on each new or return of old symptoms (and the fear that accompanies them), we should be aware that by harnessing our minds, our vortex of emotions, we can gather ourselves in and experience them for what they are.

I have a lot of physical symptoms. And by focusing on them alone, I have ignored how I have reacted to them. No one talks about the MS Mind as a symptom, apart from informing us that MS can cause depression. It is a subsidiary to MS. Yet, if we can strengthen our mind impulses and our tendency to imagine the worst case scenario, could we live more peaceably with MS?

We cannot change the cards life has dealt us. But one thing I am learning is that I can change my perspective. Strengthen the mind and we can cope with anything.

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Dodging The Bullet

dodging the bulletWell it seems the draggy, schleppy foot is here to stay for a little while longer.

It’s surprising how quickly I’ve got used to it, the exaggerated lifting of the offending foot. Apart from The Teenager mimicking the Kennedy Space Center voice – ‘One giant leap for woman….’

Anyway, I’ve been thinking. It could be an old symptom coming back in a sneaky, evolved form, or it could be a new symptom. I could tie myself up in knots about it. Like most of us with MS, I spend my days inwardly saying, ‘there goes the foot drop, oh, that’ll be the heat intolerance and yup, some loss of balance for good measure.’ And, ‘can I go to sleep now?’

Maybe I spend so much time in fear of a new symptom, a relapse, a further loss, that I forget to concentrate on the here and now. The MS symptoms will go their own way regardless. The way my mind goes is of my own choosing. Over that, at least, I have a modicum of control.

So maybe I should stop worrying about dodging the bullet. If it happens, it happens. I was utterly paralysed by fear last week. And what good did it do me? I came down with a stomach bug.

In a way, it was a relief to concentrate on a non-MS symptom for once. All thoughts of MS were pushed out my mind as I put my much-diminished energy in to becoming better. As quickly as possible. I crawled back into bed, the monotony of it only relieved by my friend delivering me all the Saturday newspapers, a McDonalds burger and Coke (I know, I know, but it helped) and a big bag of chocolate buttons.

If this last week has taught me anything at all, it is that MS is part of who I am. The more I try to side-swerve and ignore what is happening, the more I suffer when a symptom comes to the fore. It’s not about giving in, but accepting that it happens.

The meltdown I went through was probably far worse than the symptom itself. And what does that show me? It is my mind, not my body that is out of control. A sobering thought.

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