Category Archives: Emotions

Oct 28 2016
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Emotions

In My Friend, I Find A Second Self …

friendsTo  have friends is beautiful, magical and life-enhancing.

MS can obliterate that.

I lost a lot of my friends during my MS diagnosis, four years ago.

Whether they couldn’t cope with my new ‘diagnosis-status’, my angst, my late-night texts/phone-calls, I’m not sure. Probably a combination.

My best friend once took a ladder and crawled up the outside of my house and into my bedroom to check I was still breathing, as I lay over-emotional with red wine in my bed. To be fair, I would have done the same for him.  And I have done.

He was the one I called on the day of my diagnosis and we spent the evening lamenting and crying (mostly me) in a cosy gastro-pub. But also building plans for my future. Little did I know that in five months time, I would be unceremoniously sacked from my job. The reason?

MS.

I won the case, but lost immeasurable time with my son due to all the poisonous letters via the lawyer; time I will  never get back, so I used the paltry payout to take us to New York for five days, as a thank-you to The Teenager for all he had to put up with.

And now, now I am ‘living/thriving/succeeding with MS’, where are those friends now?

Luckily, I still have a close circle. I think.

Some have sloughed off along the way, and that’s to be expected. Do I demand more than I can deliver? Perhaps. How many times can I ask for a friend to visit me whilst I am ‘en sofa’?

It’s that boring, I bore myself, honestly.

Twice I’ve asked a dear friend to let me know dates he’s free for a get-together at mine and twice he’s brushed me off. Is my house so dusty? Pesky 300-year old cottages. Or is it deeper than that? Am I … embarrassing?

Twice I’ve asked the friend I’ve known since our kids ran out the classrooms clutching pumpkin masks. Pop in for coffee?

Nada.

I can only presume, on the balance of ‘worth a friend/not worth a friend’, I’ve lost.

I miss those friends.

I’ve had to take six days off work with a dreadful cold/almost-flu-but-not-quite, which weirdly coincided with The Teenager being away on a school trip. And really, it was all for the best. I schlepped around, lay on the sofa, felt sorry for myself and argued with the cat.

But I sure missed my friends …

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Sep 20 2016
16 Comments
Emotions

Future-Proof?

sleepI’m one of those smug people who’s asleep the minute their head hits the pillow.

I slumber straight through to my alarm (stupid, crashing waves on a seashore), which is why I triple-check that The Teenager has his front door key handy at all times.

Not so much recently though; I’ve even surprised him by being upright on the sofa, knocking back hot chocolate and watching Sky News wide-eyed at 1.30 am as he stumbles through the door.

Whether it’s the pesky thyroid or MS, I’m not sure. All I know is that it’s annoying, frustrating and ruining my diet (I munch on toast and pick at leftovers).

Being awake in the dead of night does strange things to my brain. I’m not motivated to add 100 words to my dissertation or go through my bank statements, things that would make me feel saintly in the morning.

Instead, my brain runs riot. Darkness creeps through my thoughts. During the day, I know I’m doing well – working, studying and most importantly, bringing up The Teenager.

However, in the wee small hours, I worry about working (how long can I do this?), studying (how long can I do this?) and The Teenager (how can I help him into adulthood, am I doing enough, am I failing?).

What will happen to me when I can no longer work? With the galling statistic of 80% of people with MS giving up work within 15 years of diagnosis, the future looks bleak and I’m 4.5 years down the line.

On the upside, perhaps I could live on a barge, cultivating pots of geraniums on the deck and gliding through canal-ways? Or move to India and live on a beach, spouting profound and inspiring words of wisdom to gauche back-packers? Or flat-share with a bunch of other mature students, labelling my milk in the fridge and avoiding the gunk in the shower?

On the downside, what happens if my MS progresses?

Without a significant other to look out for me, will I wither away? Be eaten by mice?

I’m trying to be an optimist. I’ve had great treatment. I’m determined to work as long as I possibly can. But in the back of my mind, it’s always there, the thought that one day, this may all change …

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Aug 12 2016
14 Comments
Emotions

The MS Olympics

ringsI’m enjoying the Olympics.

I’m also thinking, ‘you think that’s hard, try juggling The Teenager, Work, Studying and MS. Pah.’

Honestly though, I’m not really so mean-spirited, but I do sometimes think I put in an Olympic performance most days. We all do, don’t we?

If MS could be an Olympic sport, it would surely be the hurdles; you’d be standing there looking at a sea of impossible things to get over safely and with dignity intact.

Sadly, that’s not always the case; I would probably stumble flat on my face at the first hurdle, lie there for a while staring at the sky, humming gently to myself and let everyone else overtake me. A bit like life really.

Mind you, I think my performance could be vastly improved if I had access to an Olympic network of nutritionists, physios and mind-training-coaches. Plus a little bit of sponsorship wouldn’t hurt either – I would quite happily wear a discreet logo (or even a huge one) if it meant I had a few grand in the bank.

It’s interesting listening to the competitors speaking to the news broadcasters straight after their performances, especially when they lose – ‘I gave it my all, but there wasn’t anything else I could do really. I gave it 110%.’ How true. I need to bear this in mind when I come up short to my own expectations – I’ve passed many a day beating myself up for not doing this, not doing that. Or as an Olympian would say, ‘I had nothing else to give.’ Yes. So us peeps with MS are actually strangely similar to world-class athletes?

When MS strikes, things you take for granted become hurdles, things you can see you just have to get over. There’s no other way. Weird stuff like formulating a sentence when you’re shattered or trying to navigate a staircase when your balance is shot (me last night). Or attempting to pour boiling water into a cup without first-degree burns.

MS requires tremendous mental strength. We may not be physically able to do what others take for granted, but boy, do we have tenacity in bucketloads. It gets us through the day.

Therefore, I think everyone with MS and other chronic illnesses should give themselves a huge pat on the back. When the Olympic rings are packed away and the last firework goes off in the Closing Ceremony, don’t forget, we’re still here, trucking along, facing each day with fortitude.

And if we don’t come up to our benchmark ‘good day with MS’, well, ‘we gave it our all.‘

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May 23 2016
12 Comments
Emotions

Happy 28th Birthday To Me!

birthdayI was diagnosed with MS four years ago this week.

If you’re anything like me, and each MS-diagnosed year feels like a dog year, then that makes 28 years I’ve had to get used to this.

And, whoah, do I feel every single one of those years.

Four years? Is that all?

But, as with any birthday, there is a lot to celebrate. Challenges? I’ve had a few. I’m still here. Bad times? Many, and I’m still here. Horrendous, vile, despicable times? Too many to mention but they are behind me now. This week is about having a look over how far I’ve come, not just about the hurdles I had to clamber over to get here.

The Teenager is thriving; he’s just finished his last exam, has actually hoovered his entire bedroom and emptied his bin and even decided to start cooking for us both a couple of nights a week, in preparation for university life. First up? Beans on toast. Yum. It’s the thought that counts.

Don’t tell the boss, but I love my job. The alternating work sites so I’m never bored, the camaraderie, the fresh air. I adore it. I can pick and choose my hours so medical appointments are never a problem. There’s no tutting or eye-rolling when I take a bit of time out to shake off the Uthoff’s or get to grips with foot drop.

I’ve just entered the dissertation stage of my master’s degree. It’s flown by and here I am. Completely unprepared and uncoached in academia-speak, but I will try my hardest. And when I hand over my hard-backed version to my tutor in twenty years, I will be beaming from ear to ear.

And last but not least, I have been through a major life-upheaval with my mum being ill. I found strength I never knew I had and thanks to my fabulous friends and family, I have navigated the ups and downs that a serious illness brings, only this time I am at the other side of it.

The downsides? I’m still working on my spontaneity – I can’t wait to say, ‘yeah, great, it’s 7pm, it’s a beautiful evening, of course I’ll join you’, or, ‘ok, macrame wasn’t quite what I had in mind for an exciting hobby, but, sure, I’ll give it a go.’

Or the usual gremlins – appearing drunk, tripping/falling over, wonky speech, dodgy hands, etc.

Yet for all that, I can’t quite believe how far I’ve come since the Bad Old Days of Deep Sorrow and Wailing. I think I am a kinder, more compassionate person and I appreciate every single positive thing in my life beyond measure.

MS might have laid down a challenge, but I challenged it right back.

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Apr 24 2016
8 Comments
Emotions

Gone

goneWay back in the mists of time, when my dad died from MS complications, aged 35, I knew I would always have my mum.

Now she is seriously ill in hospital, and has been for four months.

There’s always that hope, isn’t there, that our mums will shrug any illness off, put the kettle on and give us our full attention.

They’ll bustle around the kitchen, nurturing plant cuttings, swapping local gossip and making us feel like we are the most important person in the world.

Not any more.

For me, it really hit home yesterday. I had been at a wonderful MS Society Council meeting (as a fully-fledged member!), and as soon as the train pulled into the station, I thought, ‘ah, I’ll give mum a call, let her know I’m home safe’. I felt safe just thinking it.

Except I can’t. She’s too ill to really understand.

She knows I’ve been away and now she knows I got back safely but the nuances remain left unsaid. I am floundering. My safety net, that generation above me, has disappeared. It’s me at the top of the tree.

You’d think, that after four months, I would be used to it. Not a bit. It still stuns me every single day. There have been brief glimmers of hope but they have been cruelly dashed.

Next week, I’m off to London, as a finalist for an MS Society award. I’m wholly unprepared – a recycled outfit, untrimmed hair, red face and snagged nails. I’m a mess. It’s been four months of non-stop angst.

I’m absurdly worried that I won’t be wearing a dress – but after my attempts, which have come to nothing, I’m resigned to my black trousers and top. It will be a miracle just to attend the ceremony.

However, in the midst of all the gloom, all the decisions, drama, horror, it meant the world to get away for 24 hours and be amongst an inspiring group of people who just understand.

Perhaps I do feel safe: just in some different, new form.

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