Category Archives: My Ramblings

Aug 03 2015
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My Ramblings

Relapse! A Game The Whole Family Can Play

GamerSadly, an MS relapse never comes alone.

It brings with it problems and complications for everyone.

In my case, mostly for The Teenager.

Luckily, my mum took my exploding pile of laundry back to hers, and I had already made a batch of green lentil lasagne for the freezer, which I’ve slowly been grimly chomping my way through, The Teenager preferring beans on toast (which he makes, result!).

So, yes, the biggest problem I have right now is navigating my way through this relapse, making sure The Teenager is ok. Money helps. As do his friends.

There’s a fine line between total disclosure and discreet hiding for kids and MS. They need to know enough not to worry too much. It’s their childhood after all.

I’ve become an expert in abstract usefulness – as soon as he’s around, I’ll ‘busy’ myself with some random task, in the hope that he’s reassured. I/we can’t escape the inevitable tiredness. It’s there for all to see. But, in the ‘up’ time, if I can still keep our show on the road, then I am winning.

A work colleague asked me recently how I managed a relapse without a partner. ‘Badly’ was my answer. There’s no one to take the slack. But it’s fine. We muddle through.

With my brain so concentrated on getting through this, I am an avid listener. As parents, we often tune out our Teenager’s rambling (at least I do) as we’re so busy catching up on Things That Must Be Done. These past few days though, I have debated (lying on sofa with blankie) the merits of Ed Sheeran versus Nirvana, his play-list of catch-up series’ and the beauty of his Pulp Fiction poster (discuss). It’s been illuminating.

He’s been very patient, although he does have a captive audience. I just lie there, directing. And you know what? I told him where the drill was and he dismantled his old wardrobe. I gave him a pile of coat-hangers and he hung up his clothes. I pointed him in the direction of the vacuum. And he found it. A joyous moment.

So a relapse is bad news, but with it, hopefully, there’s been some silver/teenagery linings. We’re no longer in the emotional meltdown arena of a few years back. I guess you could say we’re both finding – and stumbling – our way through this.

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Jun 13 2015
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My Ramblings

Who’s The Minority?

disabledDo you consider yourself to be disabled?

Well, if you have MS, you are disabled, according to The Government.

I’m not sure how I feel about this term.

What is disabled anyway? Unable to do what others can? Are we disabled by our own limitations or by society and our environment?

On the flip-side,what does healthy mean? Do you know a healthy person? I’m not sure I do and interestingly, a new study by the University of Washington throws up some truly gobsmacking results.

An analysis of 188 countries revealed that just 4.3% of the population have no health problems. 4.3%. Further, a third of the world’s population – 2.3 billion people – has at least five ailments.

Who’s disabled now?

If 95.7% of the population have at least one ‘disability’, even with my maths, it pretty much means we’re all in the same boat. We are a ‘disabled’ society.

In a way, I feel comfortable having a set-in-stone diagnosis. My random symptoms have been gathered under one umbrella, MS. There is legislation in place to ‘protect’ my rights. All well and good until an employer chooses to ignore them and bully you out of your workplace. I speak from experience.

Funnily enough, one of the people who took great pleasure in sacking me for my MS actually took many, many more sick days than I ever did (and unlike me, she had paid sick leave). So who’s the disabled one? She was off work so often, it was a surprise to see her in the office.

Why are those of us with a Confirmed Diagnosis of Something or Other lumped together into a group, best dealt with by suspicion, fear and enmity? Even though I worked just as hard/harder than anyone else, I became someone to be viewed with distrust.

If unhealthy (gah, what a term) people are the majority, where have we gone wrong as a society?

Years ago, I used to work in a tremendously busy office. So-and-so had a special cushion for her chair as she had backache. Another person had migraines and had to take frequent screen-breaks. Someone else had diabetes. A typical office then.

Perhaps it is time to recognise that as a society, we all deal with some pain or ailment on a daily basis and it is our duty to protect and nurture each other. We’re only human after all.

And the irony?

The job I was unceremoniously sacked from was within a care company, specialising in helping ‘disabled’ people to retain their independence.

You couldn’t make it up …

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May 19 2015
16 Comments
My Ramblings

If You Don’t Get It, Don’t Worry

hadnYou know that phrase about MS, ‘If you don’t get it, you don’t get it?’

I have a real problem with this and I seem to have stumbled over it a lot recently.

Yes, we may belong to a hideous ‘club’, bound together by our lesions and twerks (twitching and jerking at the same time, gah) but does that mean we seal the borders and allow no one else in?

Ok, so no one without MS will ever understand what it’s like to live with it. Similarly, I don’t know what it’s like to live with more than one child, or to live with cancer or to live with an addiction to scratch-cards.

But, I would like to think that if I had a friend who confided in me about a particular problem, I would empathise and try to understand. If this friend then turned round to me and said, ‘you don’t get it, you’ll never get it’, I would beg to differ.

Problems have a funny way of overlapping; I don’t have cancer, but I resonated with the recent adaptation of ‘The C-Word’. I don’t have a gambling problem, but, boy, was it scary how quickly I fed $5 notes into a machine in Las Vegas.

By saying to anyone else without MS, ‘you just don’t get it’, you cut off a huge amount of support. I realise we will never convey the debilitating effects of MS fatigue, or be able to describe an MS hug. That’s life; we can’t experience everything in this world.

It’s just that phrase – it’s inclusive, a little small-minded and ridiculously hopeless. Unless we describe our symptoms and how they impact on our lives, how can we convey just what MS does to us? Can you imagine if I did this with The Teenager?

  • I’m going to sleep. You won’t understand, you don’t get it, go away.
  • Ok, I tripped. You wouldn’t understand. Leave me alone.
  • So I dropped my mug of coffee. And?

How would that make him feel? Anxious? Frightened? Isolated? Why not let him into my life? Wouldn’t it make him a kinder, more well-rounded person? He doesn’t need to know everything, of course, but enough to not feel excluded.

Newly-diagnosed days are a great example. It is only by allowing the partner who accompanies the peep with MS in that we can begin to create more understanding in relationships. What we can sometimes forget is that MS doesn’t only affect us, it affects every single person around us.

So how about we lighten up a little? I will never experience the MS my father had. And for that I am grateful. But it doesn’t make me less of a person.

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May 17 2015
4 Comments
My Ramblings

How Ugly is ‘Too Ugly’?

orangeAs to be expected, I’ve been ruminating/crying about my recent experience of TV-land. (see previous blog post).

The spiel for the dating show applicants is: ‘Do you have a medical condition or physical disability that makes dating a challenge?’

Hmm. I have raised my head long enough from my family-sized tub of Ben & Jerry’s to have a definitive answer to this.

“No”.

Not under that title anyway – ‘Too Ugly for Love’.

To be fair, yes, as is common with many other 41 year old women, I do pick over my  ‘faults‘; they are as follows:

  • In certain lights, my nose can appear a bit too large for my face – candlelight is good for this reason as I’ve never got round to learning the dark art of ‘contouring’ with 20 different shades of beige make-up.
  • I am fat. No denying it, although I prefer ‘curvy’, ‘Rubenesque’ or simply, ‘womanly’/’feminine’, and with my height, I can carry it off. Honestly.
  • I have a fairly small mouth, but I make up for it by being extremely gobby on any subject.

This probably doesn’t make me ugly, just normal. But chuck a diagnosis of MS into the equation – yes, it makes dating more difficult – but it certainly doesn’t make me ‘Ugly‘.

Ugly is such a cruel word, and definitely not a word I would ever equate with a disability. To this end, I consider myself ‘Beautiful Enough For Love’, my alternative title. A disability makes us:

  • Open to life in a way we never thought possible – life is short and for the taking.
  • We are non-judgemental – we know that every single person has a ‘disability’, whether it’s a personality ‘flaw’, a ‘disability’, a ‘mental health problem’. Labels are pointless and meaningless. We are who we are, warts and all.
  • We have taken up the challenge of a lifelong illness and that makes us brave and wondrous.

All this adds up to why I chose not to take part in this programme. It is demeaning. It is not empowering – merely schadenfreude at its most despicable.

My life is interesting enough, and if the right person comes my way, I will date him without the cameras and exploitation.

And if not, there’s always a Saga holiday. I’m 9 years off qualifying …

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May 11 2015
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My Ramblings

24 Little Hours

cocktailsMost mornings I wake up with some kind of energy. And the kitten playing pat-a-cake on my face.

I could use this energy to prepare and cook dinner from scratch with exotic ingredients, meet up with long-neglected friends, catch up on my emails, try out a new must-visit cafe in town, browse around a second-hand book-shop and schlep around Ikea.

All finished off with a cocktail served in a jam-jar in some dark, obscure wine bar.

Sadly, life doesn’t work like that. My ever-so-limited energy is always in the morning, my slump is post-2pm. Just ask the boss. He can set his watch by me as I stumble around, packing away my lunch box and folding my newspaper, yawning conspicuously.

As soon as I wake up, it’s as if a little switch is flipped; time starts ticking away and I race pointlessly against it.

Reverse my ideal day back to reality and I will throw together a quick dinner (fish fingers, spag bol, fish fingers, Dominos), neglect my friends, feel guilty about my emails, never visit that new cafe (probably closed down by the time I even think about going), order books online and dream of a double serving of meatballs in the Ikea cafe. All finished off with a cup of tea and a nice sit down on my sofa.

Over my morning coffee, after feeding and depositing the kitten outside, I scan my to-do lists (plural). Yup, can do that, tick. Ok, can do that, tick. Put some laundry in, pack six pieces of fruit in Teenager’s school bag (lol), take out recycling. I have a Plan for After-Work.

After Work, I get home, feed and deposit the kitten outside, slump, scan to-do lists, laugh ironically and feel a little bit pathetic. I weigh up fish fingers versus spag bol. I change the loo roll and feel mightily proactive. I sit at my kitchen table and hoover in a circle around me, wishing I could move a little further.

So many hours and so little energy to fill them with. I watch the clouds pass by from my sofa-vantage-point. Pretty. I am being Mindful. I pick up and put down a book (it’s more than 200 pages). Flick through a magazine. Too much information. Turn on the telly. Pat the cat. Shout upstairs, telling The Teenager to turn down his music. Wonder what that odd smell is. Burning fish fingers and I haven’t even put the beans on yet.

For now, my days continue to be upside-down. Do you think it would be odd to host a dinner party at 9.30am? (Asking for a friend).

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