Category Archives: Emotions

Jun 25 2014
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Emotions

Stumbling Back to Happiness

If you stumbleAfter almost three years of MS-and-self-imposed exile, I am slowly but surely reintroducing myself to polite society.

My cunning strategies seem to be working. Often it’s the small(ish) things.

Such as, I hate the heat and it hates me back with a blazing passion.

Now though, rather than worrying about my tomato face, I plan a set time outside, give myself one last blast of the air-con and pop on the sunglasses.

I can often be found lingering at the chest freezers in Iceland and worry they’ll ban me soon as I only ever buy eggs.

Who cares if I’m bright red? I’m out, it’s enough. And when my legs start to buckle I know it’s time to grab a Slush Puppie and head back to the car, mission accomplished. When I’m in work, the boss agrees to go easy on me as long as he can still laugh when I stumble. Who cares? We’re good friends going back years and I don’t want anyone to tip-toe around me (wish I could do that without losing my balance and falling over – sigh).

As regular readers are aware, I’ve also signed up with a personal trainer. Who’d have thought it even a few months ago? My Nike joggy bottoms didn’t arrive in time for my first session, but who cared that I turned up in jeans and an Andy Warhol t-shirt? Certainly not the trainer who still made me learn how to execute a perfect squat, which was surprisingly difficult. Ceiling to floor length mirrors didn’t make the job any easier. But I did it. And I’m going back next week.

Only problem is, I got a little bit carried away afterwards. The Teenager came home from school to find me saying, ‘hey, look, look at this! (squat) look what I can do! (squat)’ Naturally he was less than impressed and retreated backwards to his bedroom, on his phone, no doubt tweeting my sorry plight to his mates. I paid for it the next day though, barely being able to walk down the stairs. Pesky muscles screaming in shock at being used for the first time in years.

Anyway, I finally knew that I was officially ‘back’ on Saturday. I’d arranged to meet a good friend for dinner, meeting first at his place. Great. Did my hair, got dressed, fed the cat and left. I knocked on his door:

Him: Huh?

Me: Dinner? Arranged the other day? My kid’s away, your kids are away?

Him: (spluttering and looking back longingly at his Lord of The Rings dvd on pause) But, honestly, I really didn’t think you’d turn up. You’re always so tired. Was expecting a text from you to say you couldn’t come. As usual. You okay?

Me: I’m good. I’m great! I’ll wait, you get ready. Got any chocolate in the fridge?

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Jun 12 2014
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Emotions

A Blessing, Heavily Disguised

blessingsYesterday, I was having a chat with someone I’d never met before.

For various reasons, MS popped in to the conversation, as it does. We discussed how it had affected my life, what had changed.

Towards the end I said, ‘you know what, in some ways, I am blessed.’ Weird word to use. I’ve thought about this before, but yesterday it really crystalised for me. She seemed perplexed.

I tried to explain that a lot of people are well into their 50’s/60’s or even 70’s before a major health crisis appears. To have had this happen in my 30’s and to get the chance to totally reevaluate my life from every perspective is a gift. MS brought me up short and made me realise just how fleeting and wondrous life can be. I would be most miffed for this to happen at, say 65, and think to myself, ‘all those regrets, all those wasted opportunities.’

Mind you, I haven’t always felt this way, as regular readers will be well aware. The sheer unfairness of it all. The grieving process, the fears, the endless panic. It didn’t help that in my case the MS onslaught was so dramatically sudden – I went to bed one evening and woke up the next morning unable to speak or walk properly. Life had shifted irretrievably on it’s axis.

MS cleared the decks. The uncommitted boyfriend swiftly left the building (see ya! No, I didn’t want to marry you either), old family politics diminished in their insignificance and most of my fair-weather friends disappeared in a cloud of, ‘honestly, if you need anything‘, whilst stepping/running backwards from the room.

I started to ask what my life was all about. What did it mean? What could I do that would be fulfilling? For me and The Teenager. Which is why I spent my tribunal payout on a trip to New York, the least I could do after all the Teenager had coped with. MS is the reason I’ve enrolled on an MA. And, dear reader, it’s the reason I am in touch with a, ahem, personal trainer, to try to instill some body confidence after it’s been battered with steroids, meds and far too much comfort food.

I still have fears. I’m still reminded every single day that MS is ever-present. But I think now I am living the life I was meant to live. I’m just hoping the trainer goes easy on me and at least allows me to congratulate myself with a donut for picking up the kettle bell, which has been my trusty doorstop for the last two years. We’ll see.

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May 22 2014
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Emotions

Happy MS-Versary To Me…

happy MS-versaryOn Sunday, it will be two years to the day that I was diagnosed with MS.

Two teeny-weeny years, but it feels like a lifetime ago. Unlike my six-month anniversary (totes pretentious sad, no?), this will be a time of positive and uplifting reflection.

I am throwing off the black mourning clothes, although I do look rather fetching and dramatic in black.

Maybe I’ll just keep the black eye-liner. And beret. Anyway, so here I am. Here is my list of things I feel truly grateful for:

  • I have moved into the acceptance phase. At Long Last. I’ve gone from being scared beyond belief, waking in the wee small hours, to being well-informed, if still a little bit scared.
  • My relationship with The Teenager is stronger than ever. He went to London one weekend three years ago and came back to a parent who was in hospital unable to speak or walk properly. He was only 11. We’ve had tears, heart-rending conversations and hugs. Just yesterday he asked me if I was going to die of MS. I was driving at the time, bit awkward, but we chatted about it and I reassured him I would be around long enough to show his great-grandchildren that photo of him sitting naked in a jumbo-sized plant pot when he was two.
  • I have a brilliant support network. From our MS team here in Cardiff who are amazing to all you guys I’ve met through blogging and Twitter. When I stopped blogging a while back, it was as if I’d been unplugged from a power source. I can’t tell you how much I missed you all. You keep me sane(ish).
  • I have a fabulous job with my best friend. Ok, so he might snigger when I trip over yet again, or forget what I was saying halfway through a conversation, but he’s been great. He employed me as soon as I was sacked from my last job, even though he hates paperwork with a passion.
  • I finally finished my second degree (after much, much wailing and angst) and have signed up for an MA. Never would have happened without MS. It really does make you grasp life with both hands – no pun intended.
  • This is an odd one – I don’t really remember my dad as he died when I was very young, but I feel somehow closer to him, more understanding of what he must have gone through, as he had MS too.

This Sunday, as much as I would like to host a tea party or climb some random mountain just to mark the day, I will be in work. Yup. Some things never change *waves to boss*

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May 20 2014
21 Comments
Emotions

You Are Now Entering The MS Bubble….

bubbleHmmm. It’s been pointed out to me that perhaps I live in an MS bubble – I think MS, breathe MS, speak MS.

Nothing could be further from the truth.

Fair enough, perhaps I am trapped in some kind of bubble, but through no choice of my own.

I have always said, if I had a partner, he would be my ‘blog’. I could offload, work through feelings, come to resolutions. I don’t have that. Therefore, I blog.

Sadly for you guys, you are the devils on my shoulder. And what a brilliant collective of devils!

So how far has my MS bubble extended?

  • First, I must address the point made by some friends – they know people who don’t ‘bang on’ about having MS. Hmm. I write a blog about MS. (come to my house and we’ll chat about anything and everything but not MS – for more than five minutes). Furthermore:
  • My blog is not the whole story. Believe me, you would run for the hills if you heard the whole sorry saga.
  • I have a life outside my blog. Yup!
  • I lost my job thanks to MS and ignorant employers – MS (but I won the tribunal – result!).
  • I nearly flunked Uni – MS.
  • I passed degree and enrolled on an MA – MS.
  • My career path has radically altered – MS.
  • My (sadly neglected) dating history has ground to a halt – MS.

So, yes, MS has had an impact on virtually every area of my life. Even down to reading a book. Anything more than 300 pages and it’s Kindle, not a paperback. Numb hands are not much fun. Ditto shampoo bottles. And squeezy ketchup.

I was told (by a fellow MSer) that I ‘may as well go out with him’ as he was ‘the best I could hope for now I have MS.’ Well, no.

My world has perhaps been shaped and altered by MS, but it in no way defines who I am. I was always go-getting. I was always adventurous. I have always brought up The Teenager to believe that life was out there, ready to be discovered.

Which is all the more surprising as The Teenager is somewhere on the autistic spectrum. I was fortunate. I met a leading expert years ago – he told me ‘push him out there. make him believe he can do it. You can’t change his world, but you can help him adapt to it’.

And, you know what? It took me three years to get him to catch a ball and the same time to teach him to swim.

So, no, MS is definitely not the most important thing in my life. The Teenager is.

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May 14 2014
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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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