Category Archives: Emotions

Aug 24 2015
16 Comments
Emotions

Sad, Sad World …

tedReally?

What is it with MS?

This melancholic feeling has descended like a lump on my life. And I hate it.

Yeah, yeah, life is hard with MS, but I mean, really?

It started when I drove home from work (a very good day, as it happens).

I sighed. Then I sighed some more, from deep within. And I felt a little bit sad.

Gah.

(lump on chest)

I got home, made a coffee and thought about it, then I sighed a lot and felt a whole lot sadder.

MS. A license to feel like crap. Except I didn’t want to.

I struggled against it. I organised my scarves (a tick on my to-do-before-campath-list). I shuffled through my herbs (another tick).

I cannot say how this melancholic feeling descends. It really is out of the blue.

Life trucks on in a great way, bizarrely- I sent my book off for an award and I bought some Brazil nuts for breakfast.

So what is this stoopid MS nonsense?

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Jul 29 2015
12 Comments
Emotions

The Plastic Revolution

food processorAfter an awful couple of weeks (health, blah blah, vicious people blah blah), I have found ‘The Answer’.

Who would have thought that a modest plastic thing with two settings – plus a turbo boost – could bring me such joy?

Yes. My brand-new food processor has revolutionised my life.

I was standing there the other day feeding bits of butternut squash into it, the mash part of my vegetable pie. It may have taken a couple of years but I’m now embracing a much healthier diet, spurred on by the daily weight increase thanks to the dratted thyroid meds.

Anyway. There I was, letting my mind wander when it came to me, ‘hang on, why am I feeling this despondent about recent goings-on, all of which are outside my control?’

Hmm. This scenario was beginning to sound boringly familiar. A bit like MS.

As luck would have it, I saw my lovely neurologist last week who mooted a third course of Campath as there’s a couple more lesions, one which was active, on my last MRI. We chatted about it and it was obvious I was going to take the damage-limitation path and choose a third course.

So, my MS is, for now, manageable.

People, sadly, are not.

I’ve learned that if you keep getting cannon balls lobbed at you, you begin to duck.

Then you walk away.

Back to my food processor. I stumble home after work, a new recipe already printed off, ingredients waiting for me in the fridge. I chop, blend, pulse and pulverise. It’s unexpectedly therapeutic.

With no small amount of serendipity, The Teenager is also going through seismic changes. Hold the front page – Dominos has lost one of their most faithful customers.

He is going to the gym five days a week, losing the pounds and toning up. I’m currently researching chia-seed  and flourless birthday cake for next month when he turns 16. However, we have yet to get over his aversion to onions, red peppers, garlic, apples and porridge. Give it time.

So, where are we? Me and The Teenager are doing just fine. We’ll both get through this and we’ve both got a whole lot to look forward to. At times it seemed our little family unit might implode under the dual pressures of MS and those few rogues intent on making our lives a misery.

They can pack up their cannon balls and leave. And let us get back to what we enjoy doing the most – looking after ourselves.

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Jul 25 2015
8 Comments
Emotions

The Year Of Tragical Thinking

tragedyI’m a bit weird, in that I seem to celebrate my own personal New Year around the time of my birthday.

Which, I hasten to add, isn’t for three whole weeks.

Anyway, this time last year I could still be found in dark corners, lamenting my fate.

I mean, really?

Sure, I had MS, was fat, single, wrong side of 40.

And today?

I have MS, am fat, single and the wrong side of 40.

So, what’s changed?

Well, I think I have finally found some backbone, even though my spine is yet to be MRI’d. But I’m sure it’s only a matter of time.

I’ve been trucking along, picking up the pace when MS allows, making sure The Teenager is ok, ensuring our household is running smoothly and the kitten is fed, yet all the time in the background there’s been certain people hovering, just waiting to see me trip up and make a spectacular fool of myself (I wish I was making this up).

And it would have been so easy. Almost too easy.

I’ve often wondered what drives people to make other people utterly miserable. What possible enjoyment do they derive from it?

And there’s the nub. I’ve spent far too long thinking about this. A very tragic, very long year. Years probably.

I watched an excellent programme the other day, ‘Before I Kick the Bucket’ on BBC ( I urge you to download it and follow her on Twitter – @B4IKTB). A woman explains she will probably die soon from breast cancer. Puts life into perspective, Big Time.

I can sort my weight out. I can join Tinder (lol). I can accept a third course of Campath. But I will never be able to change other people’s perceptions of how I am failing miserably at being … me.

And if that’s not enough to get my soggy brain around, I don’t know what is.

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Jul 16 2015
10 Comments
Emotions

Parallel Lives, Sliding Doors

appleEver wondered what your non-MS life would look like?

I have. Frequently.

On that fateful day in 2011, when I woke up into a nightmare, I often imagine how it would be if it were just another Saturday.

I would schlep around a flea market, buy some artisan bread, laze around on my sofa like there was no tomorrow.

  • I would still be a trusted member of the team in my workplace. The very idea of being sacked for having an illness such as MS (when we, as a company, prided ourselves on, ‘allowing our customers to reside at home as long as possible, with a little care‘) would have seemed like a bad dream.
  • I would still be in a relationship.
  • I would still be an active parent.
  • I would still be awake at normal hours.
  • I would still cook everything from scratch.
  • I would still have a fully-functioning brain.
  • In short, I would be trucking along, just as always.

Instead, I woke up into a beautiful, cloudless day when all that was missing was my power of speech and my balance.

There were no warning signs, nothing unusual, although I was a lot more tired over the previous six months. But that was all it took – a massive, life-changing relapse and everything had altered.

I lost my job, my partner, the trust of my child and my future.

But what did I gain?

Well, when I look back, I would still be in a soul-destroying job, still in a dead-end relationship and still be oblivious to the wonders all around me. Ok, so my brain might not work properly, but what’s writing creatively without a little struggle?

I gained a new direction and a new purpose.

Not all to do with MS – like a lot of you guys, it could have been any life-changing illness. It just makes you wake up, take stock and steer your life in a whole new way.

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Jun 28 2015
8 Comments
Emotions

Guilty? Oh, Yes.

guiltAfter a truly horrendous couple of years with MS and then the wonder of Alemtuzumab treatment, I am at a curious place.

I’m over the moon that my MS has stabilised; the enduring symptoms remain but are manageable, mostly.

Relapses are now few and far between – horrifying when they happen, catapulting me back to the bad old days, but they pass.

Before I went to Austria on holiday, my mum was worrying herself silly that I wouldn’t be able to cope with MS and all its symptoms so far from home. Luckily, with a bit of forward-planning and plenty of adjustments, I pulled it off.

I was having a chat with her today, and I remembered saying to my neurologist in January that always, always, at the dark place in my mind was my dad’s MS and could, would, the same thing happen to me at some point?

Of course, I know it probably won’t, but the mind is a strange thing. I feel incredibly guilty that my MS has been made a whole lot easier than my dad’s ever was. And not only that, also that I’m faring better than a lot of people who have MS today.

I’ve tried to re-form this thought. Ok, my MS is under control. So, what can I do with this reprieve? Should I do everything I possibly can, everything I ever wanted to do? How long is the window of opportunity? MS has shaken me down, given me a resounding slap across the face and pushed me into places I’ve never been before.

Me? Public speaking? Well, yes, even with my weird Scottish-Americano accent – I’ve talked at MS newly-diagnosed days, to executives of Genzyme (the manufacturers of Alemtuzumab) and forever on film for World MS Day, chubby face and all.

Me? Take a Master’s? Yup. I even passed the first year and am looking forward to the second.  And mulling over my tutor’s suggestion about taking a PhD *faint*.

Me? Take on unscrupulous employers and win? Yes, and then some.

My biggest fear hasn’t been realised – I’m still here to cater for The Teenager’s every whim. We’ve got through the exams, the future plans and the prom (a very, very long and traumatic story – not me, him).

I’m still here, I’m doing ok, but I can’t shake the guilt.

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