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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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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When MS Is Your ‘Significant Other’

datingBefore work one day this week, me and The Builder were busy slurping our McDonald’s coffees, nattering away.

We usually talk about screws, fixings, grout and such like. As you do.

But today, he was telling me all about his neighbour and his have-to-be-seen-to-be-believed dating adventures.

Apparently this neighbour has six women chasing him and has recently been proposed to. Gah.

I have no men chasing me and am sadly lacking in the Sorrento Engagement Experience.

This got me thinking.

Quite soon after MS popped up, my partner scarpered. And I’m quite glad, in hindsight.

But now, three years down the line, where does that leave me?

I was recently contacted by a TV  company. They were lovely; they enjoyed my book, liked what I was doing to raise awareness about MS and asked if I would like to take part in a dating show.

Well, my heart leapt. At last! I could find a croissant-eating academic with an interest in knitting. I was sold.

Until.

The email.

Thank you for expressing an interest in ‘Too Ugly For Love’.

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MS Is Having A Laugh

mobileI woke up this morning wondering why on earth my mobile phone was on my leg.

It buzzed on and off and as I drifted in and out of sleep, I pondered this new situation.

It kept ringing so I got up and discovered my phone in its usual place, on the bedside table, next to the pile of books I’ll never get round to reading.

Strange. The phone wasn’t ringing but my leg was buzzing.

Great.

A new MS quirk. My left leg now vibrates every five minutes.

I got on with my day, catching up with appointments, popping to the shops and slumping in front of the telly, leg still buzzing away. My foot drop also reappeared like a long-lost enemy, which means my favourite flat boots are now scuffed beyond all recognition.

I did what I normally do when a new MS symptom pops up – I got my favourite blankie and fell asleep on the sofa, hoping it would go away by the time I woke up.

It didn’t, so I guess it’s here to stay for a while. What should I do? I veered between self-pity and, well, more self-pity.

Then I stopped. How would that help? I tried to see the funny side. I had a meeting at university to see whether I could take a PhD (don’t laugh), and bored/scared my friends by asking them to put their hands on my leg to see what I was talking about. Phew. I wasn’t going mad, my leg really was vibrating.

Anyway, the upshot is, ok, a new MS symptom. It’s annoying and means my leg moves in a totally new way. I just have to deal with it. And, although it might sound weird, I have to see the funny side. As it is, my nerve pain means it feels like I have mobiles strapped to my feet. This has gone on for over three years. So I’ve just added a new one.

MS is having a laugh. And it’s all about having a laugh. What’s the alternative?

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A Reply To The Critics (Trolls)

trollOne of the downsides to going ‘public’ with my MS blog are the trolls.

I’ve always been reluctant to use my real name; not for some precious reason but simply because my mum has the same name and there’s not many of us Stenslands in the UK. It’s a Norwegian surname (thanks, Dad!).

The major criticism I’ve had is that my blog is facile and ridiculous.

Ok. This October, my blog will be three years old. I don’t know many blogs about MS that have lasted that long. My blog charts my ‘story’ from being sacked for having MS, through diagnosis, through finding a new job and all the emotional ups and downs an MS diagnosis brings.

I have also always refused adverts on my site, despite numerous requests. Fair play to other people who do that, but it’s not for me. I pay my own hosting fees (not a small amount) and I cover all my costs. My blog is pure and simple. And I hope my message reaches those who can take comfort from my own story.

Trolls are nothing new. If they had half a brain they could even be intelligent. I had a particularly nasty one on Twitter a while back. She spewed bile about me for some reason. What she could not have known, and probably wouldn’t have cared about, is that she aimed her attack during a particularly difficult period for me. Well. I hope she’s satisfied.

Anyway, trolls won’t stop me blogging the truth about MS. It’s not pretty, it’s often funny, it’s crap and it’s hysterical.

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