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 27 2013
14 Comments
Uncategorized

Who Wants an Online Book Club?

I’m breaking my usual Silent Sunday rule! We’ve been having some chatter about starting an online book club through my blog.

I’ve had a word with my techie expert (hello Jan!) to see how we can start a page that can be sub-divided into separate books and their comments, so we don’t have thousands of comments about all the books in one long stream.

Jan will do her usual magic and get back to me, so if anyone out there would really like this to go ahead, please comment on this blog post so I have a rough idea of whether it is a good idea to launch ‘Reading Between The Wines’?

Maybe thinking about doing one book a month to stretch our MS-foggy minds? So let me know (and please spread the word!!) and we’ll see where it takes us…..

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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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Jan 25 2013
14 Comments
Emotions

The Joy of Simple Things

I am surprised to find myself writing this, but there is a lovely, positive side effect of living with MS. Honestly! Of course, it goes without saying this is apart from being in touch with all the fabulous MSers I’ve met through meetings, Twitter and the blog.

I wandered round my favourite charity shop yesterday and picked up a whole pile of books. Regular readers will know I adore reading and am in the middle of setting up an MS book club – Reading Between the Wines. So I took them home, stacked them neatly on my bedside table and sighed, blissfully. So many books to read. It only cost me a few quid, but put a huge smile on my face.

This got me thinking. Pre-MS, my focus was wide and long-term. I would plan my career, The Teenager’s education and hobbies, my studies, my ambitions, my fears, etc. Unwittingly though, I skipped over all the small things that make life so pleasurable and worthwhile. Now, even though I still plan long-term, MS has also narrowed my focus in unexpected ways.

It started with the daily grind of getting through each new relapse. Life suddenly zoomed down to whether or not I could get off the sofa. Anything else was incidental. Would I be able to walk down the street without tripping? Would I be able to cook dinner? Could I manage to put the bins out?

But then something strange happened. Every time I was able to do something small, I felt a huge sense of achievement. Which is rather sad, as often it was only something as simple as making beans on toast, or navigating a wonky trolley round the supermarket. But I still celebrated the small stuff.

Since Alemtuzumab treatment, my relapses have stopped (touch wood). I still have bad days, sure. But what this focus on the small things has left me with is an almost childlike appreciation of things I long took for granted – coffee and a catch up with a friend, reading the Sunday papers from cover to cover, walking in the snow, fixing the mould in the bathroom.

My life has changed for ever, and however cliched it sounds, I really do now focus on what I can do rather than lament over things I am no longer able to do. So thank you, MS, and I really do mean that.

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Jan 24 2013
15 Comments
Daily Life

Fun In The Bathroom

The snowpocalypse has meant I have spent an awful lot of time at home, which has given me an awful lot of time to stare at the mould creeping along my bathroom walls. Finally, I have had enough.

In the old days, pre-MS, I could paint the bathroom in half a day, whizzing around barely stopping for a breather. This time, I will need to approach the project with caution, precision and a battle plan.

So, the other day, I began. After trudging up to the doctor’s for my blood test, I trudged back to the paint shop. I had done my research, and I knew I needed an anti-mould solution, an interior seal damp and finally, paint, so I asked the guy for help finding them.

‘But why do you need all that stuff?’ he asked. Well, the bathroom is exploding with mould, it’s horrible. ‘It can’t be that bad, surely, how old is your house?’ Oh dear. Obviously women shouldn’t know anything about painting or preparing surfaces, yada yada yada. I gave him my best steely look, gritted my teeth and informed him the house is 160 years old, the window sills are over a foot thick and if the damp has gone in that far, I’ve got a serious problem.

He gave in, but got the last laugh, thrusting a couple of paint brochures into my hand before I left, saying ‘here, take these, they’ve got some lovely pretty colours in there.’ I stomped home in  a mood. I don’t care if I paint the bathroom in ‘ocean ripple’, ‘chic shadow’ or ‘urban obsession’, as long as it gets done. If I had my way, I’d paint it all black so I’d never have to see the mould again.

Anyway, I am all set to go, but nothing has been done. Three reasons: my arms get tingly and numb if I hold them up for too long, my balance won’t be the best on step-ladders and I worry about suddenly get tired half-way through.  The guy in the shop didn’t quite succeed in making me feel completely stupid and girly, but MS certainly has….

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