Monthly Archives: May 2015

May 12 2015
40 Comments
Blogging

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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May 11 2015
14 Comments
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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May 09 2015
4 Comments
Emotions

The Darker The Shadow, The Stronger The Light …

limboI’ve had the most incredible week.

Believe it or not, my podgy-moon-face has been in three different films, all raising awareness about MS in different ways.

First up, a video at my local teaching hospital to show trainee doctors a real-life MS scenario. Let’s just say, I hope I haven’t put them off neurology, gah.

Second, a film for The Newly-Diagnosed. Hopefully I came across as reassuring and positive about MS. A tricky place to be as we all have to go some sort of mourning period? I know I did and it lasted well over two years.

Third, me and The Teenager went to London yesterday. I was taking part in a film for World MS Day, about coming to terms with an MS diagnosis and all it entails.

It’s all been busy and illuminating. We went down the day before so we could be calm and collected before Filming. Plus The Teenager has GCSE exams looming next week, so he packed  a bag full of notes and a lot of anxiety. Mind you, all notes went out the window when he spied the massive telly on the wall in our hotel room, conveniently placed in front of his bed. And the chocolate vending machines in the foyer.

Anyway, I met some phenomenal people, all living well with MS. Despite MS? And that’s the thing. We’re all so different. We all have wildly varying MS stories, but we’ve all forged an ultimately positive path.

I’ll be honest, I often feel isolated. I’m a divorced, single parent with MS (get the violins out, meh). Yet there is a wonderful network of people who will draw you towards them, putting an arm around you and tell you, ‘no, you are not alone.’

MS casts a very dark shadows on our lives – on our relationships, our family, our work, our … very being. Who are we now? Now we have MS?

Well, the good news is, if you are in the shadows, there are so many people out there holding out a friendly hand. No one has to go through MS alone.

I remember, back in the Bad Old Days, when fatigue and relapses pinned me to my sofa. I sent out a tweet, ‘I need support’. Well. The support came flooding back. I was never again alone.

And that’s the thing. For all of us who have been through the darkest days, can we light the way for the peeps who are going through the same thing?

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May 04 2015
4 Comments
Symptoms and Treatment

Need-To-Know Basis

flumpMy short-term memory is playing havoc with my life.

I now seem to exist in a permanent state of wonder.

Wonder at why I am standing at the fridge, peering in at the contents. Wondering why I’m holding a bottle glass cleaner in one hand and an unopened sachet of cat food in the other.

The Teenager was diligently typing up study notes for his looming exams the other day:

‘Mum! Oi, mum. When you finally stop watching Mad Men, could you have a look at my notes?’

‘Of course my little cherub.’

Ten minutes later, I put the rubbish and recycling out, placed the to-be-returned library books in a prominent position and vacuumed up stray cat biscuits. Then sat back down and un-paused Jon Hamm.

‘Muuuuuuuuum. My notes, like, d’ur?’

Gah. I completely, utterly, totally forgot. It’s got to the point that if I’m planning to cook dinner, a seismic IQ challenge in itself (any recipe longer than four steps is consigned to the ‘yeah right’ pile), I have to constantly remind myself what I’m doing. Which can be a little bit tricky, especially living with a Teenager.

‘Mum. Muuum! Why are you saying ‘mince’ all the time? It’s, like, a bit weird.’

‘Must get mince out of fridge, must get mince out of fridge, must get … must, oh, um, what was I doing?’

The Teenager looks at me and sighs. As does the kitten, as I’m still holding her cat food in one hand.

Right now, I’m living on a need-to-know basis. Which I guess is a bit like mindfulness without the, well, mindful part. Every day is a brand new awakening, as I stumble downstairs, trip over the kitten and am confronted with reminders – notes, lists, information I completely forgot overnight.

My diary is my new best friend. Everything, and I mean everything, is logged. Not just the appointments, but the ‘buy milk’, ‘put washing on’, ‘order cat litter’.

I had a chat with my mum this morning about it. She completely agreed, it’s hard. Then she said, ‘mind you, I’m 64, hee hee. You’re only 41. 42 this August!’ Is it MS? Or is it ageing? I know it’s MS. Before, I prided myself on my memory, almost photographic. I was highly organised, everything at my fingertips.

It’s been a wake-up call, but in a way it’s a teeny bit liberating. Friends confide in me, safe in the knowledge I’ll forget what they said within a week. I live more in the moment. My brain is uncluttered with insignificant stuff.

I’m trying to see the upside in this. Can you imagine my delight when I opened a kitchen cupboard and found an unopened packet of popcorn I’d forgotten about, left over from book club? It makes it all worthwhile. Kind of.

Photograph of The Kitten, Brontë, a couple of months before we adopted her.

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