Tag Archives: Twitter

Nov 07 2013
20 Comments
Symptoms and Treatment

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….

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Sep 27 2013
12 Comments
Work and Studying

My Boss, He’s Brave

breakfastMy poor boss, who’s been employing me since I was sacked from my last job for having MS, is a very patient man.

He runs his own construction company, so finding a suitable post for me was never going to be easy.

I’m very good at my job though – I’m brilliant at helping him out (‘you missed a bit, no not there, there’), I don’t mind eating bacon rolls for breakfast and although he casts longing glances at his radio, I’m sure he much prefers listening to me chattering away about something and nothing in between checking Twitter on my phone and sitting in the van to keep warm.

Thankfully for him, I’m not on site much. More often than not I get to sit at home and make phonecalls and undertake important research, like a project manager kind of role.

‘Hello, is that Bricking It Ltd?’

‘Great, um, I just wondered how much your red bricks are?’

‘How many? Oh, that’s a good question.’

‘Shall we say, enough for an extension? Nope, don’t know the size, but it’s kind of big.’

Anyway, the Boss decided to have a Quiet Word last week and started with, ‘look, this isn’t working out, is it?’ Oh. As I was about to hand over my Stanley knife, woolly hat and McDonalds coffee loyalty card (only one coffee bean sticker left to collect), he put an interesting proposition to me. He asked me not only continue to work on his quotes and paperwork, but also keep his website up to date and run a Twitter account in his company name – become his Social Media Manager (posh).

Getting all excited, I grabbed his arm and said, ‘Yes! Right, we need to find your voice, sweetie, your voice. What kind of Twitter voice do you want to have? Funny? Factual? Serious?’ To cut a long story short (let’s just say the Boss’s eyes glazed over), he’s going to leave that all to me. Well, my mind’s been working overtime.

I will tweet the latest Gregg’s sausage roll deals, interesting facts about architraves and skirting boards and throw in a few philosophical musings, such as ‘the journey of a thousand miles begins with one brick.’  I reckon the Boss will be most impressed.

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Aug 06 2013
27 Comments
My Ramblings

My MS Is Worse Than Your MS

My MS is worse than your msFor me, the best side effect of having MS is the support of fellow MSers.

MS nurses, neurologists, charities are brilliant, but there’s nothing like talking to another person with MS. They just….understand.

Whether they’re virtual friends made on Twitter and through blogging or people I’ve got to know in person over the past few years, the support is incredible. No worry is too small to share, no question too random.

So why is there an insidious underbelly of hierarchy among people with MS? When did MS become a competition? I have heard many variations on these comments:

  • ‘You’ve only got relapsing remitting? Hah! You don’t know the half of it.’
  • ‘Oh, I’ve been in a wheelchair for years, you don’t know how blessed you are.’
  • ‘How many times a day do you fall over/trip/stumble?’
  • ‘You’re  lucky, there’s nothing they can do for me. I just suffer with it.’
  • ‘Wish I could be in remission, I just get worse and worse.’
  • ‘Are you sure you’ve got MS?’

And the absolute killer when it comes from someone with MS, ‘But you look so WELL.’ I’m glad to say these people are in the minority, but it still cuts deep. Should I not be allowed to say I’m in remission for fear of upsetting other people? Shouldn’t we be celebrating new advances in disease modifying drugs rather than sneering at those who have the opportunity to take them?

Then there are those people for whom MS becomes their entire raison d’être. They exist in an MS bubble, proud of their suffering status. They are unwilling to say or do anything that’s not connected to the huge cross they bear. And more often than not, these people aren’t even the worst affected by MS. Whilst it is comforting to be surrounded by fellow MSers, this does not define my life, just as MS doesn’t. I may have to live with MS but it certainly isn’t the focal point of everything I do. That would be as good as giving up.

For me, it is far more positive to show that you can live a rewarding and fulfilling life alongside MS. We might not be able to cure MS just yet, but we can begin by dropping the competitive element. Aren’t we all in it together?

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Mar 31 2013
4 Comments
Emotions

Cutting Ourselves Some Slack…

The last blog post brought up some interesting comments. I wrote about being too hard on myself for not being able to do everything the same way as pre-MS and it seems I’m not alone in this.

I’ve been carrying on as if everything is the same as before, leading only to anger and frustration when things don’t go according to plan.

Take the other night. The Teenager was away, I was all dressed up in my arty clothes and jewellery ready to hang out in an  arty wine bar with a friend. So far so good. I was feeling on top of the world. I was doing what everyone else takes for granted.

Two small glasses of wine and a couple of slices of caramelised onion  and rocket pizza later, I was ready to swap my flats for slippers and settle down for a night in front of the telly. I went home incredulous at the early hour and sought solace in a family-sized Bubbly chocolate bar, but it did little to assuage my feelings of sadness and anger at being such a lightweight.

Time for a re-think. MS smashes into our lives, obliterating everything in its path. We can go under or resurface, tweaking our lives in new ways.

I may not be able to go out as much, but when I do, I make the effort to hang out with true friends, the ones who’ve stuck by me through it all. I might not be able to (or want to) schlep round the supermarket, but oh, the joys of Waitrose online shopping certainly make up for it.

Housework? Clever lighting and candles hide the dust. Stuck on the sofa, pinned down by MS fatigue? Scrolling through Twitter on my phone, connecting with similar MSers across the world makes me feel far less alone. The Teenager has more of my undivided attention as life has slowed down.

MS makes you reevaluate your life. What is truly important? What will make me happier and more fulfilled? How can I improve my life despite MS?

We are all doing just fine. Most of us are still juggling everyday life as best we can as well as living with a serious neurological illness. We should be proud of ourselves. We got knocked down, but we get back up again. And again.

A big high-five to everyone.

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Feb 06 2013
11 Comments
Work and Studying

Getting Plastered

Back to work, but luckily the builder’s son is doing a week’s work experience with him, so at least there is someone as incompetent as me on the job.

A very large skip was delivered early, so our first lesson was how to load it correctly. All flat stuff in first, then stack the edges with other, bigger flat stuff.

Finally, place all the rubble sacks on top. To finish off, all the gaps are plugged with baguette wrappers, coke cans and old Sun newspapers.  I just thought you chucked everything in, squished it down and hoped for the best.

On a break, I got chatting to the painter. Anyone else ever find when they mention MS, someone will always say, ‘ Oh, I knew someone with MS. Terrible it was. Just awful. Downhill like that (clicks fingers loudly).’ Oh, cheers mate. That’s supposed to make me feel better?

We moved on to the plastering. Quite possibly the most boring, tedious, soul-destroying job ever. All I have to do is follow the builder round and round the room, scooping out plaster for him. Yawn. Then clean out the buckets. Yawn. Then do it all again. Then we wait for it to dry, then go over it again and repeat five or six times.

Last job, pipe work. So boring I won’t even go into details, suffice to say it’s maths with bits of copper. Some jobs just drag. And I was freezing, even though I was wearing the woolly thermals my mum bought me. It was one of those days. Next time will be better as the kitchen units will be delivered and I can hopefully make myself more useful.

Mid-way through the day, The Teenager texted me to say his wrist was sore again (see Muddy Hell for details…). I texted back that I would bandage it up when he got home, and no, he couldn’t have a Domino’s pizza for dinner to make him feel better.

I got home tired, cold and sore. Maybe I will take up the builder’s idea that I start up his social media instead of helping fit kitchens? He wants to create a Twitter account for his business, so must start thinking of suitable, buildery-type tweets. Something like – Blimey, the price of bacon sarnies is shocking…….

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