Category Archives: Blogging

Aug 22 2013
19 Comments
Blogging

Confused Dot Com

to blog or not to blogHmm. Excuse my random ramblings in this post – my last blog post threw up some extremely thought-provoking comments and I’m still working my way through them.

A couple of people were concerned that I’m blogging/thinking/worrying about MS too much perhaps and I completely understand what they mean, as I blog every two days.

Has MS dominated my life to detrimental levels? I’ve also always posted about things unconnected to MS, such as my adventures with make-up, The Teenager, my rantings against the Daily Mail, politicians, lifestyle gurus, etc.

Funnily enough, before the comments, I was wondering how I should move my blog on slightly, especially after the second lot of Campath treatment I had in July. Or is it naturally evolving anyway?

Initially, I started the blog for two reasons. First, to make sense of everything and second, to show that there is light at the end of the tunnel. It’s not all bad and some of it can be downright hysterical. Worst case scenario, if my blog bombed, at least I would have a nifty diary to show The Teenager when he was older.

So, where do I go from here? How much is MS a part of my life? Honestly, blogging has been the best form of therapy ever, and it’s thanks to comments from you guys that I can be prodded in the right direction. Blogging is public and I’ve always published every comment, no matter how much they might make me go ‘Ouch, that hurt.’ Otherwise, why blog? Why put yourself up for public scrutiny? Why not just scribble in a diary?

My MS journey has been weird and wonderful. If nothing else, I hope that people can see that it is possible to fight back against discrimination in work, that it is possible to be a single parent with MS and it is possible to get back up after being knocked down. I’m still confused. I love writing. I adore the discipline of searching for the right word, the best way to convey complicated feelings. I’m not yet sure how to change the direction of my blog.

Finally, now I have had Campath and haven’t had a relapse since last year, am I still ‘qualified’ enough to talk about MS? All I know is, blogging kept me sane through dark times. And without you guys, this wouldn’t have happened.

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Aug 20 2013
60 Comments
Blogging

Basically, MS Is Crap

ms is crapI’ve had a lot of good and a little bit of not-so-good feedback about my recent blog posts.

Some people told me in no uncertain terms, ‘Oi, you, stop joking about MS, how dare you? And are you not grateful/bowing down/prostrating yourself for all those who are fighting on your behalf, and if you aren’t, why the hell not?

Sadly, most of these comments were sent to me privately so I’m unable to share them with you.

I have never, ever joked about anybody fighting to find a cure for MS. They are all amazing people doing an incredible job. The only exception is fundraising by fire-walking. Personally, I still find it awfully strange when one of the most common symptoms of MS is heat intolerance. It just seems kind of…..bizarre?

When MS decided to strike for a second time in our family, I cried, ranted and raved and eventually picked myself back up again. I will be forever grateful for advances in medicine which allowed me to choose Campath, a choice my dad never had back in the 1970s. He was simply sent home with a walking stick and told to get on with it. He died when I was four, and the precious few memories I have of him are fragmented.

Why do I joke about MS? I think we all know MS is serious. We live with it day in, day out. So what’s wrong with a little light relief? Also, I joke about myself and my symptoms, no one else’s. That just wouldn’t be funny. Frankie Boyle, please take note. I just don’t understand people who think I should live a serious life just because I have a serious illness. Or is this yet another example of ‘disabled’ people having to conform to a rigid set of societal expectations?

I’ve cried enough over MS for now. It’s here, life has changed and I’ve changed with it. Like a lot of you, I no longer take things for granted and my life is in much sharper perspective than before. MS is a daily reminder of the fragility of life.

So, yes, MS is crap. It’s awful. Regular readers of my blog will know I address this in serious and more lighthearted posts. And I hope my little blog can bring a smile or make someone think, ‘yup, me too.’

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Jun 05 2013
32 Comments
Blogging

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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Jan 28 2013
11 Comments
Blogging

Well Hello, Fani!

Honeysuckle writes today’s incredibly funny/poignant Guest Blog post, – I think a lot of us will be very, very familiar with the following:

OK, what’s living with MS like?

It took a while before MS was diagnosed.

While the experts pondered, I named what I experienced FANI: Annoying Neurological Impairment. The ‘F’ is an interchangeable adjective, depending on how things are going: usually the first ‘F’ that comes to mind, but not always.

What with the life threatening, terrifying array of intractable symptoms and myriad of drugs on offer, the diagnosis of MS was a relief. Yes really. So the grief bit (you know, disbelief, anger, acceptance…) was largely skipped. It would be a massive overstatement, ok Big Fat Lie, to say that I welcomed MS. But in comparison, it’s not as scary. Not quite. Not yet.

FANI is challenging and underhand, irresponsible and unpredictable but always interesting. FANI has changed my life, on the whole for the better. No I’m not deluded or drugged, I do think this. Why? Because symptoms didn’t start until middle age and I’m still largely independent. That’s made a tremendous difference to my outlook.

That said, FANI’s not exactly a walk in the park. Initially, the early hours’ recurring loop of: You Cannot Be Serious. How Could This Happen? Tears and fears. Juddering snotty sobs. Eventually (I’m talking weeks here) followed by reflection. Fairness isn’t a concept I’ve ever believed in, fortunately. Prayer is a bit late now. Someone said, “Life is randomly cruel and kind”. This, I can live with.

Those indescribable sensations …why is an ice-cold cobbler’s lathe in my leg? Where did that shower of vibrating spikes come from?

That unrecognisable, hesitant, garbled speech. Who is that? Thanks, people for finishing my sentences with the (wrong) word that …just …… won’t… come.

Cramps…especially in my left buttock. Who gets buttock cramps? Could be funny, but it just hurts. There are few ways I’ve found to stretch and bend a buttock. All suggestions gratefully received.

Other stuff like jerky legs, limpy legs, migrating numbness and gnawing pain, frequent falls, pins and needles from face to feet, running (I wish) to the loo, utter exhaustion, daily injections now all part of the routine.

FANI you remain, grudgingly tolerated but less frightening now that I’ve learned to work around you. Not everything, but I’m getting cannier!

Life is good, although things have gradually deteriorated with each relapse. Orange, my future’s a mood-dependent turquoise or crimson, but you’re right, it’s bright. Because…? Well, shit happens and in the grand scheme, things could be much worse and there are many positives that I’ve come to appreciate. Happy to elucidate if invited back!

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Jan 26 2013
19 Comments
Blogging

Are We Our Own Worst Enemies?

Yesterday’s blog brought some thought-provoking comments, two in particular from Steve, who linked to a great blog post he wrote (read it here), and I spent most of the day mulling them over. Are MSers guilty of naval-gazing and deconstructing every single little symptom and therefore preventing ourselves from being understood by other people?

And I’ll start with the term ‘MSer’. There has been a huge amount of debate in the MS forums and on Twitter about whether it is ‘acceptable’ to call ourselves MSers. I mean, really. If we are pitting ourselves against each other in this matter, what hope is there for us? I use the term a lot. I think it is snappy, short and easy for social media. Whether or not you choose to ‘define’ yourself as an MSer is up to you, but don’t berate those who do.

I may refer to myself an MSer, but I certainly don’t live my life solely as a person with MS. It just happens to be part of my life, the same as being a mother, a daughter, a sister, a colleague, etc. Once you are diagnosed with MS, ok, you join a whole load of other people with MS, but they are all different, just as daughters, mothers and sisters are – they generally only have that one thing in common.

And yes, MSers can be incredibly guilty of dissecting and discussing each tiny symptom, blowing things out of proportion. Wait – before I get hate mail – I have been there (still am sometimes). I hold my hand up. Pre-diagnosis, I was a frequent visitor on MS forums. I was scared, bewildered, anxious and lacking in information, and often the forums made me more worried,  not less.

I started this blog to show the funny, embarrassing and downright socially awkward side of MS, precisely because I was so fed up reading blogs and forums that were simply a litany of endless complaints. Who wants to read about that?  If we want sympathy and understanding from other people, constant moaning is not the way to go about it. I know some of my posts are downbeat, but I hope the majority can raise a smile and an  ‘oh, that happens to me too!’

We need to amaze people – ‘THIS is what MS looks like’ – ‘Hey, I’m still living, working, laughing, getting drunk, being happy’. Reach down to those going through the diagnostic process, befriend them and inspire them. Maybe then we can stop this cycle of despair.

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