Category Archives: My Ramblings

Aug 16 2013
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My Ramblings

Fight Back Or Be Damned

fight back or be damnedOne of my pet hates is people with chronic illnesses being urged to ‘fight back’ by others who have no idea what they’re talking about.

Am I supposed to feel better when someone looks at me with sad eyes, grasps my hand and tells me, ‘oh, you’re so brave, I just know you can fight this thing.’

Perhaps the media is partly to blame, when every third-rate ‘celebrity’ who is diagnosed with anything is featured in trashy magazines claiming they will fight back, not let it beat them, blah, blah, blah. Ironically, they usually end their not-so-exclusive interview with a coy plea for privacy.

How exactly am I supposed to fight back against MS? It isn’t going to go away. Oh sure, I could pay thousands for quack cures, immerse myself in healing waters, start meditating, follow a Beat MS Diet, howl at the moon. And yes, I probably would feel slightly better, just as anyone without MS would also feel slightly better following a strict, healthy regime. Isn’t it better for us to adapt to our new lives with MS rather than fighting the unfightable? It’s not about giving in to it, it’s about getting on with it.

There is a creeping sense of a hidden agenda embedded within this call to fight back. Anyone with an illness must resist being ‘different’ at all costs. We must strive to regain our ‘normality’, that which is acceptable to mainstream society. We must fight back against anything that marks us as being outside the socially acceptable norm and if we appear not to be fighting back, then we’re obviously not trying hard enough. How often do we hear, ‘Oh, she fought a brave battle’ or ‘she just gave up the fight.’

This kind of pressure only makes life with MS more difficult than it already is. The only thing I’m fighting back against is the discrimination that comes with having MS. Being sacked from work because of it. Struggling to find a new job because of it. The constant blank, disbelieving faces when I try and fail to describe overwhelming fatigue and the reality of living with a mostly invisible illness.

In the meantime, I’m sticking with Jack Osbourne’s philosophy – Adapt and Overcome. Interestingly, it’s his family who talk about fighting back, not him. Anyone who wants to make me feel guilty for not fighting back hard enough, stumble for a week in my shoes, then come and talk to me.

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Aug 12 2013
20 Comments
My Ramblings

That Was The Decade That Was

happy 40thOn the eve of my foray into my forties, I’m indulging myself by looking back on the last decade.

This time ten years ago, I had no real idea which direction my life was taking. My twenties had been a whirlwind of travelling, angsty, late-night discussions in dark cellar bars, falling in and out of love and The Teenager (The Baby?) who made a late, messy and noisy arrival eight days after I turned 26.

I swapped crisp white shirts and hours spent lingering over black coffee and Gitanes for years of finger-painting, wet wipes and traipsing round the local parks. At 32, after four years of study, I qualified as a homeopath (or psychopath, as The Child proudly told his school teacher and anyone else who would listen). My clinic took off and I adored my work until the recession brought it to a sudden halt. I switched my attention to a degree course in health and social care, laying careful plans for the future.

The years passed. Endless sleepovers, fish fingers, day trips, gold star stickers, football magazines and scooters. Rugby kits and shoes got bigger and dirtier each year, those tiny baby slippers a ‘was he ever that small?’ distant memory. As he got older, I could even have friends over for girlie nights in without the fear of a near-naked child hurtling at top speed down the stairs, entirely decorated in felt-tip pen and a Superman cape. And now he’s suddenly a full-blown Teenager. All six foot of him. I adore him, even when he grunts, raids the fridge and holds his hand out for yet more money.

MS dominated my late thirties, turned everything upside down and we’re still picking our way through the aftermath. Career plans have changed as have priorities. I was unceremoniously sacked from my job, I fought back, I moved on.

MS certainly isn’t the best method for working out what’s important in life, but it’s helped. Everything is more in focus now and I take nothing for granted. So how were my thirties? Probably the decade where life shifted on its axis. The dreams and expectations I had at the start of them are long-gone. In its place is the realisation is that anything is possible. I just need to get out there and make it happen….

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Aug 10 2013
10 Comments
My Ramblings

Reasons To Be Cheerful

gooddayMy last few blog posts have been somewhat dark.

I’m not quite sure why but it probably has a lot to do with being on sick leave after the Campath treatment and spending far too much time at home on my own.

It’s definitely got nothing to do with the fact that I will be turning *40* on Tuesday (gulp). Not at all. Not even a teensy bit, although I am being rather melodramatic about it – ‘that was my last ever Thursday as a 30-something’ or’ that’s the last full moon I’ll ever see in my thirties’, before reaching for another chocolate chip cookie to console myself.

So in an attempt to cheer myself up, I am compiling a little list of things that have made me smile over the last few weeks (in no particular order):

  • I’ve almost finished my last ever essay for my university course. Six long years. Nearly pulled out two years ago when my brain decided to stop working, but got there in the end. 
  • An old friend I haven’t seen for years and years got back in touch.
  • Re-discovering the joy of toast.
  • I’ve been shortlisted for the MS Society Digital Media of the Year award – chuffed beyond belief, and The Teenager is coming with me to the awards ceremony in London (if he tidies his room and promises to behave).
  • I put a whole load of grated carrot in The Teenager’s bolognese and he didn’t notice.
  • A friend in America sent me over a package filled with fabulous presents.
  • Wandering round Ikea and managing not to buy any candles for the first time ever.
  • Cutting my own fringe with dodgy MS hands. So bad, it’s good.

I was talking to someone the other day, who asked me if there were any unexpected good things about MS. Without hesitation, I found two. First, the support from other people with MS. Who knows where I would have been without it. Second, the fact that something like MS makes you scale life right down to what’s important. I appreciate everything now, however insignificant.

Life is looking up. I will soon be ready to re-launch myself into society again and I can’t wait.

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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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Aug 04 2013
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My Ramblings

Please Give Generously

collecting tinYesterday I helped out at our local MS Society’s flag day collection in town after receiving an email pleading for more volunteers.

The orange stand was hard to miss and I was kitted out in a yellow sash, an ID card and collecting tin. I’m still not back to full speed energy-wise, so I sat on a picnic chair and spent the time chatting to people who came over to donate money.

It was a fascinating but disheartening snapshot of the public perception of MS. The consensus seemed to be that MS is an ‘old person’s illness’, that we all end up in wheelchairs and there’s no treatment for it. Maybe having three pensioners and me at the stand just reinforced this myth.

Strangely, younger people were more willing than older people to come over and donate and a good few stopped to talk about people they knew with MS and the impact this had had on them and their families.

The other volunteers told me donations had dropped significantly in the last few years, perhaps not helped by the fact that so few society members were willing to help on collection days. Out of over 250 members in Cardiff, only five were out yesterday. Surely it’s not asking too much to give up a couple of hours once or twice a year?

And there’s the nub. We all want good, local groups and most of us need the support of other people with MS at some time or other. These groups need donations to exist. Yet a lot of us complain the groups are old fashioned, depressing and full of ‘old’ people, even though MS is mostly diagnosed between the ages of 20 and 40. So why aren’t we joining these groups, bringing in new life, fresh ideas and extending a helping hand to newly diagnosed people?

What’s the point of complaining about something yet refusing to be part of the solution? If we want local support groups to be more open to change, we need to begin at the grassroots level and get out there, be visible. If we expect the public to dig deep in their pockets, how about we give generously of our time too…

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