Tag Archives: Twitter

You’re On Your Own

What does it feel like to live on your own with MS and essentially be your own carer?

Luckily, we now have a vast array of information for carers of people with MS. There are carers groups, helplines, benefits.

Thank goodness things have improved immeasurably since my dad had MS back in the 1970’s.

But living on your own with MS is a whole different ball-game – you are the patient and the carer. Sure, we might see our neurologist and MS nurse once a year – the support they give is invaluable.

Yet look beyond those two appointments, and you discover a whole raft of worry, anxiety and fear. It’s almost like arguing with yourself: ‘you need to rest’, ‘Yeah, I know, but I need to go to work/sort out the laundry/write a shopping list.’ And, ‘whoops, there goes another coffee cup, who’s going to clean it up?’

Sometimes you can cope with the conflicting advice you get from yourself, and then other times it tips over; you’re too tired to make dinner, you fall out of the shower and lie on the floor for over an hour, you take yet another day off work and worry about your income. It is Just You.

It doesn’t help when you’re also too damn proud to ask for help. I’m fortunate in that I know I have that back-up should I need it, but it still makes day-to-day living hard at times. My long-suffering Boss sometimes takes me to pick up my prescriptions, drives me to the shops for food and is always on hand to fix a blown fuse or a broken washing machine. But back at home, when the door closes, I know I’m on my own.

It’s tempting to slide into another Pity-Party-For-One, and I always fight against it – I held one for two years after my diagnosis and I don’t want to revisit those dark times.

I wish there was more information about Living on Your Own with MS. Many of us do. We muddle through.

And of course, there’s an upside – I’m eternally grateful I was on my own when I fell out of the shower. The thought of being discovered clutching a bunch of cotton buds, naked save for a small towel brings me out in a cold sweat.

This is where social media comes to the fore – to send a little tweet out into the ether and have so many comforting replies is amazing.

We may live on our own, but are we still part of a bigger network?

Tagged , , ,

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.

Tagged , , ,

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?

Tagged , , , ,

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….

Tagged , ,

The Red-Eyed Monster

the red-eyed monsterIf jealousy has green eyes, guilt most definitely has red, judging by the amount of tears I cried on Tuesday night.

The day started innocuously enough. I schlepped to work, planned dinner for later, joked around with the boss. Then blam, thwack.  Whole-body weakness, a brain stuffed with cotton wool and a need to get home pronto.

The boss let me go early and back home blind panic set in. I couldn’t cook dinner. I could barely stand and when I did, I was pin-balling off the walls, so I called my mum for help. She rushed down, but The Teenager was adamant that he didn’t want to sleep overnight at her house (no Sky Sports News).

She stayed for a while instead, giving the cat some chewy treats, cheering us up, admiring The Teenager’s new Nirvana poster and giving me a bit of space to panic some more.

All I wanted to do was go to bed, and not just for a nap. During the day, I sleep when I have to and The Teenager is either out or at school, but the evenings are different. And therein lies the problem and source of my overwhelming guilt. I’m a single parent (violins at the ready) and The Teenager is an only child. It just wouldn’t be fair to abandon him at 6 or 7pm. I know he’s 14, but I grew up with ill parents (my dad and my stepfather) and am keenly aware of the fears this gave me as a child.

So what did I do? MS left me no choice. I crawled into bed at 7pm, crying my eyes out, leaving The Teenager downstairs with his homework and remote control.

Ten hours later I woke up, guilt flooding back. Until I looked at all the tweets I’d been sent while I’d been sleeping. Lovely, supportive tweets from all around the world. I wasn’t going through this alone. So, I stumbled out of bed, woke The Teenager for his paper round and we had a little chat as he struggled to get his waterproof trousers on.

After patting me on the head and telling me he was fine, he launched into a goal-by-goal account of a football match he’d watched with the cat. Then he bashfully admitted he’d read my Twitter feed last night and felt comforted by all the messages of support, and he too felt less alone.

Just before he left for school, he said I was more than welcome to go to sleep early again, he’d just chat to my Twitter friends. Um….

Tagged , , , , ,