Monthly Archives: May 2014

May 14 2014
12 Comments
Emotions

Named and Shamed…

named and shamedIt’s been a difficult ten days, coming to terms with these sporadic black episodes encroaching on my life.

Not only that, there are also other complicated things going on (same for all of us?).

Luckily, a few days ago, the clouds disappeared and Technicolor seeped back into my life once more. What could possibly go wrong?

This evening I had a tweet, directed at me. It mentioned me by my Twitter handle and read, ‘Know who your friends are….were  #hurt #hatefully #movingon’. I won’t name the person (I’m not that low), but they have almost a thousand followers. So my ‘name’ and ‘crime’ has now been transmitted to them too. Nice.

Believe me, there are two sides to every story and most certainly in this one. I only write about this as it was the last thing I needed today. What does, ‘Know who your friends are’ mean? Vaguely threatening/chastising.

There’s ways and means of raising grievances. A couple of weeks ago I vented about a friend who let me down, but I ranted without mentioning the person’s name. Instead, we exchanged private messages. The problem still isn’t resolved and probably never will be, but at least we were fairly dignified.

‘An Inspector Calls’ was a book I read in school and have never forgotten. If you haven’t read it, it essentially sums up that just a ‘tiny’ thing amongst many others can drive someone to the brink. The straw that breaks the camel’s back. I’m not saying that’s the same here, but the kernel remains the same.

I didn’t need to have this tonight. Maybe that’s what they wanted. If so, and I know they follow my blog, hey, well done.

On a lighter note, as, after all, my blog is about showing the more humorous side to MS, here are today’s stats:

  • Tripped over in work – 6 times
  • Number of times told off by boss – over 20
  • Body-swerves around bannister – 3
  • Slips in shower – 2
  • Slices of toast and Nutella The Teenager has eaten – 4
  • Substitutions in Ocado order – none! Yay!

I am off to volunteer at a Newly-Diagnosed Day tomorrow. I was that person two years ago, so hopefully I can impart some wisdom….

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May 12 2014
22 Comments
Blogging

You Don’t Know What You’ve Got ‘Til It’s Gone….

teddy bearA lot of you know I gave up blogging a while back.

And yet here I am again.

I gave up for a lot of reasons – lack of time, a need to move away from multiple sclerosis for a bit, family stuff.

But you’ve also probably noticed I just can’t keep away.

It really hit home to me with my last blog post just how much I respect and value your opinions, comments and experiences. I had a terrible week – that awful, all-enveloping depression landing on me out of nowhere. I didn’t know where it came from and I didn’t know how to get out of it.

Just as abruptly, it lifted. But what got me through the last few days of it was your support.

Without sounding too much like a schmaltzy Hallmark card with a teddy bear on it, I really missed you guys!! You talk a lot of sense – a lot more than I do.

I’m going to think of this stage of my blog as Part Two (or Deux when I’m feeling pretentious). You all came with me on my journey through MS, the discrimination, the struggles with studying, finding a new job, coming to terms with every aspect of MS. And not forgetting The Teenager and his Dramas, i.e. run out of yoghurt or crisps.

So, yes, Part Two. What’s next? I still have down days, but they’re more and more outweighed by the good. Life has settled down. I have the best job, working with my best friend. I’m starting my MA in creative writing in September when hopefully I’ll be able to call myself a proper writer, jotting down wandering thoughts about clouds, the meaning of life, etc…

The Teenager is (at the moment) behaving himself and at least giving a good impression of studying for his GCSE’s. I still have to fumble my way through clouds of Lynx and pick my way over dropped clothes on his bedroom floor. Newsflash – he opened his window AND curtains yesterday. I think the fresh air made him slightly giddy, as he printed off a revision timetable.

Anyway, I can’t say how often I’ll blog but judging by how much I have missed your words of wisdom, I’m here to stay for the foreseeable future. Hope you’ll take me back….

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May 09 2014
18 Comments
Emotions

Introversion…

im fine‘Remember: the time you feel lonely is the time you most need to be by yourself. Life’s cruelest irony’ – Douglas Coupland

This last week, I have been lonely to the point of the blackest ever distraction.

It has at times been charming, seductive, all-enveloping. But mostly it is simply black.

I have no idea what has happened. Nothing has changed. Life continues as normal. Me and The Teenager still have a laugh, although mostly him laughing at me for not having seen the youtube clip of Emma Stone lip-synching to something or other (honestly, not that great).

He has called up Domino’s pizza to complain that he didn’t have a thin-crust as ordered and was promptly delivered a free one. A good point to discuss the market economy and its wider implications (no?) until he took said pizza plus our jumbo-sized tomato sauce upstairs to Skype like-minded friends. (yeah!!!! Wicked!!!! You should try it!!!!!).

Anyway. Black. I know depression is a feature of MS. I laughed it off to start with. I’m 40, reason enough to be a little down that I am still a ‘divorced single parent, with Teenager, cat, MS and compost heap’. 

But this is different. I can’t seem to shake it off. Which makes me a lousy friend. Don’t get me wrong, work is fine, more than fine. I’ve finally found something I’m actually quite good at, apart from picking up towels and washing rugby boots.

I said to myself this morning, ‘you must be nice to everyone you meet’. Which meant letting everyone into the traffic. At rush hour. Not bad. It worked. I waved and was waved back. Lovely. I stopped off at the shop and bought some black pudding (long story).

After work, I got home. The blackness once more. My dream of someone, anyone, recognising that I am actually a nice person to be with, fading into the background. I am alone. I have a fabulous son, a beautiful house, a great life and ,um, MS, but life is good, so why don’t I go along with the ride?

I am an introvert right now. I don’t really know who I am, post-MS. Everything has changed without me keeping up to speed. I think I have been left behind.

May 07 2014
8 Comments
The Teenager

Welcome Chez Stumbling….

no vacancyMe: ‘You treat this place like a hotel’ (am I really saying this?)

Teenager: ‘Yeah? So sack the maid’ (chortle, snicker)

We have reached that Awkward Stage, lasting roughly from 9 months to 18 years of age.

The Teenager has re-written the rules of polite house-sharing, so here are his:

  • Welcome to Hotel de la Stumbling! We hope you’ll have a comfortable stay (for years and years). Come in and don’t worry about taking off your muddy rugby boots/wet school shoes/soaked jackets. Just tramp through the house and make vacuuming that little bit more challenging. Drop your coat anywhere – we will pick up and return to the allotted coat-hook at no extra effort to you. We aim to make you feel at home.
  • Perhaps you fancy a shower to freshen up? Feel free to use the host’s very expensive shampoo (for fine hair, in need of tender loving care), imported at great expense from America. And of course, there’s no need to pick up the towels or flush the toilet. You must use as much toilet roll as your heart desires. Why not end your luxurious experience by spraying yourself liberally (and then some) with a selection of our finest Lynx deodorants?
  • As for on-site catering, we offer a home-cooked meal every day and should that not suit, we also offer an out-of-hours service whereby you may sneak down late in the evening to make toast and Nutella. As always, please don’t feel it is necessary to clean up after yourself. We are more than delighted to attend to this.
  • Taxi service – always available. However, please be aware, last minute bookings are discouraged. We do request patrons allow us at least five minutes notice. Furthermore, any detours must be agreed with your driver, for example, to ensure we have the correct money for a drive-thru McDonalds.
  • Guests. We naturally welcome any friends you may wish to bring back to our establishment, however we politely request you limit the number to five, with no more than two overnight. Extra Domino’s pizza can be arranged upon request.

We hope you enjoy your extended stay. Just one minor point – it may be helpful if you open your curtains at least once a day week. And we seem to have less crockery in the kitchen than usual. Finally, should you enjoy a tub of ice cream in your bedroom, please refrain from throwing out the spoon…

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May 02 2014
13 Comments
Symptoms and Treatment

Never Never Land

fairy dustI have been living a dream.

The dream is simple – no more relapses. No more fear.

But as with all dreams, we wake up.

Campath. It has been a marvel.  I adore it. I embraced it in the hospital. It quite literally gave me my life back but with a proviso. My neurologist told me I could expect ten good years. Yet at 37, that seemed an eternity.

A couple of days ago I met  a wonderful woman who had double the number of infusions I had. Her story mirrored mine. Eight fabulous relapse-free years.

Now she is in a wheelchair.

I have slept badly. I jolt awake, feet twitching and burning, dark thoughts running through my mind unchecked. Believe me, I don’t fear a wheelchair. I fear the loss of control.

MS is weird. We have no idea what the future holds. Mine may have rainbows arcing over the next few years. Or it could be the opposite. Do many of us ‘wish’ we had an illness with a more predictable disease path?

So I kind of feel I am back to stage one. Two years ago, almost to the day, when I sat in my car, dreading the neurology meeting. I knew it would change my life. It did. And  it keeps on changing.

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