Tag Archives: diagnosis

May 31 2013
23 Comments
My Ramblings

What Not To Say To Someone With MS

Cardiff-20130530-00192When I was going through the whole MS diagnostic process, people said the strangest (and hurtful) things to me.

It was hard enough coming to terms with MS, far less finding smart replies to insensitive comments. Everyone has an opinion and they can’t wait to give it to you.

Even after diagnosis, the comments still keep coming, perhaps because MS is, for now, a mostly invisible illness for me and trying to convey the symptoms to other people is as difficult as counting brain lesions without an MRI.

So here’s my handy print-out-and-keep list of what not to say to someone with MS. Give it to all your newly-diagnosed friends to prepare them for the onslaught and before long, they’ll have ticked every one, several times over:

  • You need to stay positive.
  • You’ll be fine, they can do wonders these days.
  • My auntie/friend/great-uncle Billy had that, and they’re great now.
  • When are you giving up work?
  • I’ve heard Diet Coke and chewing gum can give you MS. 
  • You get to sleep a lot? Wow, great symptom, wish I had that. 
  • Hey, it could be worse. 
  • But you look so good!
  • If you get a blue badge, can I borrow it?
  • Have you tried (insert any number of miracle cures here…)?
  • You’re so brave.
  • You’re cancelling our evening out…AGAIN??
  • At least you don’t actually look disabled. 
  • You’re not using that old MS excuse again, are you?

So what should they say? Best piece of advice is not to presume things, just ask me questions. Ask what it means to me and my life. Everyone’s MS is different.

And if you don’t know what to say, say nothing. Just give me a hug and crack open the chocolate….

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May 12 2013
16 Comments
Emotions

How To Lose Friends And Alienate People

IMG-20130511-00150Having something as serious as MS enter your life changes it forever. Family, work, future plans, and of course, health.

Sadly, it also lets you find out who your true friends are.

Right from the start, cherished friends deserted my sinking ship just when I needed them most. Some left abruptly without a backwards glance, others backed away slowly, step by step.

Why? I guess there are many reasons. Were they worried they’d be roped into looking after me? Would I rely on them more than usual? Were we now too different, too alienated from each other to have much in common any more?

Conversely, other friends rose to the challenge – they stuck by me through everything. They listened to me rant and rave, they wiped my tears, poured my wine and probably ended up knowing more about MS than they could ever have imagined.

Two years on, I thought nothing else could surprise me. I have a fantastic circle of friends and I hope I’m a good friend to them too, and as the MS crisis has receded, our relationship has re-balanced itself.

A couple of weeks ago, my world was rocked once more. An old friend got back in touch. We met years ago in work and although we only kept in touch sporadically, we always picked up where we left off.

We chatted by text and I suggested he look at my blog to catch up with everything that had happened since we last spoke. And that was the last I heard from him.

I feel hurt. Actually, I feel extremely hurt. And angry. The ripples and repercussions from MS are still going on, two years down the line. Now I’m semi-housebound once more after falling last week, I have too much time on my hands to reflect on this. And do you know what? It’s all good.

Those ‘friends’ who’ve left have made way for even better friends. They took their hang-ups and made space for new friends to fill the void.

If any of my friends ever face a situation like I have and I’m not sure how to handle it, the least I can say is, ‘I don’t know what to do or say, but I am here for you, you know that.’ And that is the mark of a real friend.

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May 05 2013
8 Comments
Symptoms and Treatment

In The Beginning, There Was Cake….

scrummy yummy cakeSome of you have asked how my whole sorry MS story started, so here is the potted version.

Like many things in my life, it began with cake.

Leaving a friend’s house after enjoying a slice (okay, two slices) of delicious cake. I turned to say, ‘thanks for the cake!’ but it came out as ‘thanks, Kate’. Odd. I tried again. Same thing.

I went home perplexed. The Teenager was away for the weekend and over the course of the next two days my speech deteriorated, I was exhausted and my balance was shot. I knew something was seriously wrong.

I eventually ended up in hospital, talking gibberish. The clues were all there. The overwhelming tiredness over the previous six months, the dodgy walking, the simplest tasks taking forever. Throw in a childhood in Scotland and a parent with MS and I guessed the rest.

I assumed I would be diagnosed there and then (ha!) but that was just the beginning. Until I had a further relapse, I was in Limboland with no idea how long I would stay there. It took a year to hear the dreaded words, ‘highly active/rapidly evolving relapsing remitting MS’.

That year was probably the worst of my life. The lumbar puncture was a vile, medieval torture, the MRIs were terrifying and I lost count of how many blood tests I had. I lay awake at night, rigid with fear, worrying about the future. A lot of people say the day they are finally diagnosed is both the best and worst day of their lives. I agree. After all the waiting, the anxiety, the fears, it was a relief to finally have some answers. But it doesn’t make it any easier.

My main priority was to keep life going on as normal as possible for The Teenager. I would sleep in the afternoons, setting my alarm so I was awake just before he got home from school, duvet tucked away behind the sofa. I hid my anxiety. I became best friends with the pizza delivery man.

Those were dark, dark days. They are behind me now and an uncertain future still lies ahead, but isn’t that true for everyone? And as for cake, well, it certainly hasn’t put me off…

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Mar 13 2013
4 Comments
Work and Studying

Getting Away With It

How depressing – new research from the School of Social Sciences at Cardiff University found that employees with disabilities are twice as likely to be attacked at work and experience higher rates of insults, ridicule and intimidation.

Sadly, I am not surprised, given my own experience (read more here).

The research shows 12.3% of people with disabilities or a long-term illness were humiliated, gossiped about and ignored, compared to 7.4% of people without disabilities.

Similarly, 10.5% of disabled people had been attacked at work, compared to 4.5% of non-disabled people.

Any bullying at work is unacceptable, but the bullying of people struggling to make a living whilst coping with the challenges a disability brings is simply heinous. Why does this happen? Does it start in the school playground when anyone ‘different’ is singled out for ridicule – the child with glasses, the kid with spots?

A bully is essentially a weak person exerting power and authority over those they deem even weaker than themselves to boost their own fragile ego. The person being bullied may find it harder to fight back if they are also disabled or have a long-term illness – in my case, I was adjusting to my diagnosis of MS, the implications it would have for my life, family and career and also going through Alemtuzumab treatment. At times it felt as if I was fighting a war on several fronts.

Why did I put up with this treatment? The daily humiliation tore at my soul and took me down to the darkest depths of despair. One evening, shortly before I was sacked, I sent The Teenager to a friend, sat on my sofa and cried myself hoarse. I was utterly defeated and broken. I had reached my absolute limit. Three people had systematically destroyed my self-confidence and belief in myself in a way no diagnosis of MS ever could.

I stayed as I was determined to remain in work, at least until I found a better job. I accepted the treatment meted out to me, I plastered a false smile on my face which barely hid my pain. Inside I was dying. Five months on, I am slowly rebuilding myself. The damage has run deep, the humiliation deeper.

I will return to my former self and I will be stronger.

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Mar 01 2013
20 Comments
Work and Studying

I Fought Back…And Won

Actually, I canI was sacked from my job last October for having MS, preceded by a vicious campaign of bullying and harrassment which almost drove me over the edge. At the same time, I was struggling to cope with my diagnosis and had also just been through Alemtuzumab treatment in the summer.

The day I was sacked,  I went home in shock. I was at my lowest ebb. The drip-drip effect of the bullying had left me sapped of confidence, drained of energy and incapable of any positive thinking. The sacking was the culmination of a truly horrific year. How anyone can bully a person going through a diganosis of MS is beyond me and the cruelty of it still astounds me.

I decided to accept my fate and leave it at that. But then I got angry, then furious. Was I really just going to walk away? Luckily, I still had one tiny scrap of fight left in me and so began a long legal process.

I am over the moon to report that I have now won my case. The matter is settled and it is time to move on, with my dignity and pride restored.

Bullying at work can be insidious. It is not always immediately obvious. It can start insignificantly and like an abusive partner, can slowly erode your confidence, your judgement and your rational thinking. When the bullying then escalates, you feel too undermined and isolated to fight back.

Bullying someone with MS (or any other serious illness) is cowardly. The bullying may come from a position of strength, from their status in work, but it is only carried out by weak people who take delight in hurting others who are already in pain.

I have fought a long, exhausting battle and was close to giving up along the way, such was the hold these people still had over me in my mind. It’s only thanks to family, friends, fellow MSers and a fabulous lawyer that I got to this point.

If you are in the same position I was, don’t accept it. You are worth more than that. Keep notes of every incident no matter how small, every date. Surround yourself  with a strong network and most importantly, realise that it is not your fault.

It’s a beautiful feeling to wake up every morning knowing I am no longer bullied. I am a worthy person and I will go on to better things. As they say, success is the best revenge.

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