Tag Archives: Twitter

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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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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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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Why, Mr Darcy….

After some serious blog posts about being sacked from my job for having MS, it is good to bring some breathtakingly exciting news – Bridget Jones returns! There will be a third novel published next Autumn and I have donned my big pants in celebration.

Bridget played a pretty big role in my life. I read the novel while I was pregnant (always arriving late to a trend) and the first film came out when The Teenager was a baby. I remember watching it with a sigh of relief that I was past that stage, yet bittersweetly nostalgic for my ‘carefree’ single days. Mind you, I have never had two men fighting over me (oi, over here, Darcy!) and it never snowed quite so beautifully when I lived in London. But what Bridget showed legions of women, including me, was that it was ok to be less than perfect, or overweight or not entirely sure of which direction our lives were headed in. She spoke for all of us.

I identified with Bridget in so many ways – the badly-put-together work wardrobe, the awkwardness, the rampant self-doubt and the complete inability to cook for a dinner party. I winced with recognition at her eagerness to be wanted by Daniel Cleaver, the cad. And I too feared I would end my days alone, half-eaten by Alsatians.

I am worried though, that if they age Bridget in real time, she will be in her late 40’s. Will she be as funny? Will she be blogging instead of writing a diary and counting her Twitter followers instead of how many cigarettes she smokes? Crucially, will she still speak for all of us? I await with baited breath.

If I were Bridget, my daily life would be something like: Alcohol units: too many, Weight: fluctuating, Meds: 3 plus 5 supplements, Hours spent seeking blogging inspiration: 2.5.

Note to self: Lose weight, drink less and eat more vegetables. Then my very own Mr Darcy may just come along…

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All of a twitter

Ooh, get me! After resisting as long as possible, I took the plunge and signed up to Twitter. Blimey, it’s brilliant! What was I waiting for??

I was gently nudged to join by the lovely people on the mumsnet bloggers forum (@LynnCSchreiber, I bow down in gratitude). Suddenly, the whole world has opened up. I am connected to an incredible network. Just when I’m feeling unloved, unemployable and generally everything  ‘un’, I discover there’s a bunch of supportive bods out there.

Watching the drama of the American election unfold was made all the more wicked reading comments by India Knight and Caitlin Moran – almost as good as having them squashed on my sofa next to me, cackling away with a good dose of alcohol and Kettle crisps.

My tweets so far have been pretty uninspiring but I am sure I will learn from the masters. Already I am chatting away to like-minded people. A fellow MSer even re-tweeted one of my blog posts about being sacked for having MS and I’ve had firm support in return. I am not alone.

So, I am a convert, and you will have to excuse the shorter post today – still trying to work out what hashtags on Twitter mean. Should I #hashtag everything? How can I cultivate a clever, laissez-faire tone with my tweets? Any suggestions gratefully received…

Join me on Twitter:  @MS_Stumbling

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