Tag Archives: blogging

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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I Think, Therefore I Blog

why blogI had an interesting comment on my ‘Pause. Press Play’ blog post the other day:

‘Some of your blogs raise comments and some don’t. Do you know in advance what do and what don’t. One cannot be creative all the time. Do you find you write things because of the commitment or deadline?’

I went away and thought about this and worried that people who read my blog think I just bash out any old post to fill space. I guess it’s a fair point, but believe me, every post is carefully considered. Some posts will appeal or strike a chord with people, some won’t as they’re more directly concerned with my own life, rather than the wider ‘living with MS’ picture.

The ‘Pause. Press Play’ post was an update – I had been off work for three weeks with a haematoma. It also focuses on the wider issue of my current employment. Due to a series of misfortunes, i.e. being stripped of my duties in my previous job and ultimately sacked for having MS, I am between jobs and it’s only thanks to a good friend that I am employed, albeit in an unsuitable job. Rather than be signed off sick, I will fight tooth and nail to stay in employment.

I was highlighting that despite the dire situation, I have brilliant friends and I can still find the humorous side. You have to if you want to live any sort of life with this blasted disease.

I started this blog as a platform for discussion and all comments are welcome – I’ve had my fair share of negative ones and that’s instructive too. Blogging should be two-way process, otherwise, why blog? If you invite comment, you should be prepared to respond to it, hence this post.

In answer to the question, no, I don’t always know which posts will bring the most comments, and I’m often surprised at which ones seem to hit a nerve and are commented on, re-posted on Facebook and re-tweeted. I love the often lively discussion that follow some of my posts and I learn a huge amount from the different viewpoints that come through.

I am grateful for the comment as it allows me to raise some points but as I wrote back, the day I stop having anything to say is the day I stop blogging.

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Blogging Is The Best Therapy….

Blogging is weird. I started my blog last September. At the beginning it was a much-needed outlet to download my buzzing mind and create some sense out of the whirling thoughts, fears and expectations tied up in a life with MS.

I read a blogging instruction manual from cover to cover. I’m no techie, but I found a blog theme I liked, uploaded a picture and hesitantly wrote my first post, ‘The Loneliness of The Long-Term Diagnosis’ and I was off. I wrote about make-up, round robbin letters, work, emotions, The Teenager, my cat. I wanted to show that living with MS is not solely about symptoms, appointments and restrictions.

Ultimately, most of us are young-ish when we are diagnosed. We’re in the middle of bringing up our kids, working, studying, carving a niche in the world. MS could be re-named, ‘Life, Interrupted’. I wanted to show that life does goes on, albeit in a more serious, more measured manner. Saying that, I wanted to pull out the humour. Tease the threads of how life is different, yet essentially the same. We still worry about exactly the same things, just with a skewed slant.

I was shy when I told people I had started a blog. I had five views a day. Ultimately, I saw the blog as a diary, and perhaps a present I could give to The Teenager when he was old enough to understand. I promised myself I would write for a year only, until September 2013. A year with MS.

Then everything changed.

Life suddenly got more serious. I ‘lost’ my job. I was betrayed by a ‘friend’. I was in a pretty bad place. Blogging took on a whole new meaning. I joke that it kept me sane, but really, it did. The support I had was/is incredible. I used to be dismissive of the ‘blogging community’. Who needs it? I have great friends, right here, on my doorstep.

Ah, but. Connecting with people from around the world, all of us finding ways to live with this vile, cruel disease, has been (words fail me).

So, to all of you who have supported me, made me laugh out loud at your comments, sent me a cheery Tweet – Thank You. Yup, a soppy blog post…..

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Be My Guest….

be my guestIf anyone wants to guest blog, just drop me a line.

Around 400 words , about anything you like to do with living with MS. No holds barred.

 

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To Blog or Not To Blog…

Why not write a diary? Why not chat to friends? Why blog?

I have thought a lot about this since I started my blog last September. Why am I exposing my innermost thoughts to the world? Hmm. Long story short – when I was going through the MS diagnosis period, I read everything possible about MS. I read the factual sites, I read the blogs, I read the chat rooms.

All of them offered me great support, with a special mention to the MS Society forums. Yet, I still felt there was something missing. Where was the humour? I went through hell during my diagnosis. I got drunk, fell over, bored my friends to death.  But I came out the other side, stronger and ready to take on the world.

I wanted to show people that yes, MS is crap. It can ruin your life. Dreams are destroyed and your life plan is altered forever. MS shatters families. But when the worst has happened, surely the only way is up?

I think I have incorporated MS into my life. I hope so. And it’s pretty grim a lot of the time, but other times it makes me laugh out loud. I am used to the dodgy walking, the foot drop, the random jerking and general oddness. The fatigue is just part of my life now. I do as much as I can, when I can.

To begin with, I kept my blog a secret from my friends and family. I wasn’t ashamed, I just felt exposed. But now, even though I know there are people reading my blog who I would prefer not to, I just think, ‘and?’.

This is life with MS. It ain’t always pretty, but it’s the truth. The comments I have received keep me going. So often, I have thought, I can’t blog any more. Then I get a lovely comment and it makes it all worthwhile. So, I’m going to keep blogging, keep telling the crazy truth about life with MS. And all feedback is always gratefully received…

 

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