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.

Tagged , , , , ,
Mar 11 2013
22 Comments
Symptoms and Treatment

This Is A Boring Post

‘I’m bored. Bored, bored, bored.’ (stamps foot)

Think this is The Teenager expecting me to entertain him? Nope. It’s me talking to a friend.

Something all the leaflets about all the symptoms of MS don’t cover is the sheer, mind-numbing boredom that comes with it.

MS itself is never boring – there’s the unexpected delight of waking up in the morning wondering just what symptom it will chuck at you today, and MS has a whole bag of them. But with these symptoms comes the crushing boredom.

Top of the list is the boredom that comes with having to sleep. A lot. It’s a huge time-waster, it’s not fun or cushy and there is nothing more boring than heading for the sofa – again – when there are so many other more exciting things to do. I’m bored of being in the house so much while life continues elsewhere. I’m bored of boring my friends with the endless symptoms:

‘How you doing?’

‘Oh, you know. I dropped a mug this morning. I tripped over the cat. I went to sleep. I had a bit of a wobble. How’s you?’

‘Well, after I partied all night, I had a fabulous day at work before whipping up a dinner party for eight. The usual.’

Then there’s the boredom that comes with all the planning. MS is like a stroppy, badly-behaved toddler you have to lug around – for life. Before you go anywhere, you plan where the loos are, you work out if there’s a cafe nearby to stop for a break, you pack a bag of stuff, you can’t stay out too late.

When your world shrinks and spontaneity is something you have to seriously think about, there’s not an awful lot of options left. Friends tire of always being bailed out on. I’m out of synch with them, going through an accelerated old age in my 30’s. The highlight of my day is getting a pen and marking an asterisk next to interesting programmes in the Radio Times. Years ago when I saw someone do this, I was scornful. How tragic, such an empty life. I mean, who does that? Um, well, me now.

So how can I combat this boredom? What can I do from the comfort and safety of my couch? Wordsearch puzzles? Solitaire? Spray-paint the cat purple? Any suggestions gratefully received.

Tagged , , , ,
Mar 09 2013
4 Comments
Daily Life

Nice Face, Shame About the Makeup

bad make upI sat down to write my list of things I must do, hugely inspired by comments from the last blog post, completely forgetting that I had actually attempted something for the first time ever last week.

Don’t laugh. I went for a make-up consultation. Yes, I entered the Glossy Hall of Terror and lived to tell the tale, albeit with a slightly bruised ego. I had done my research, knew which counter I wanted and marched with purpose towards it, then stumbled past the perfume-sprayers, the ladies who lunch and the gaggle of make-up ladies, in whose über-manicured hands my fate now rested.

At the counter, I nonchalantly pretended to examine the nail varnish until an assistant (Hi! I’m Carly!) with thickly-troweled-on make-up, surprised brows and a blowfish smile wobbled over to me in her 6 inch heels (jealous, much?). Out came my sorry tale, the heat intolerance, the cold intolerance, my poor, ravaged complexion, my battered soul. She nodded sympathetically, head cocked to one side as I pretty much flung myself at her feet, begging for help.

‘Now, do you want the ‘no-make up, make up look, just like I’m wearing?’

‘Oh, um’ (a quick glance at her face confirming my worst suspicions) ‘Well, I was hoping to , er…..’

‘Don’t you worry pet, my auntie had cancer, awful it was, so I know just what you’re looking for. You want something to help you fight back, face the world, feel strong and feminine again!’

‘Well, honestly, I’m just looking to, um, freshen things up a little.’

‘Super duper. Now, here’s our colours, our brushes, our pots, our testers, our dvd, our loyalty card, our massively overpriced eye cream. And what we do, what’s really special, is that I will call you next week, see how you’re getting on with your new make up. Isn’t that lovely? A nice little phone call. Should cheer you right up!’

Desperate to leave, I selected the make-up I wanted, chucked in a moisturiser and a primer and wangled some microscopic free samples, then diligently wrote down my telephone number and fled.

It was nice and girly to do something different, and some compensation for having such a limited range of shoes to choose from. Sadly, I still haven’t got the hang of blusher quite yet – less English Rose and more Spanish Beach Holiday Mahogany. And I’m still waiting for that special phone call from Carly…

Tagged , , ,
Mar 07 2013
20 Comments
Emotions

Chronically Ill, Terminally Depressing?

I'm fineThe builder popped over to see me after work the other day. I was on my sofa, floored by MS fatigue, snuggled into my duvet, watching trashy tv.

As soon as he walked in and saw me, he took a step back, a look of dismay on his face, ‘God, I feel depressed just seeing you there like that.’

If he’d slapped me across the face with a wet fish, it couldn’t have hurt more. I protested, made a joke about it, but it touched a very raw nerve.

I don’t want to be depressing. I don’t want to be that person on the other side of an invisible divide. I saw myself through his eyes and didn’t like what I saw. MS has shoved me under ice. I look the same, but I’m trapped, banging on that ice, yelling pointlessly for my friends on the surface to hear me.

I’ve had to absorb a lot of changes into my life since MS smashed into it like an unwanted gatecrasher at my party. Some of them are huge, but most are small changes I now take for granted – the afternoon naps, the slower pace of walking, the brain mush. To me they are now normal. But seeing myself from someone else’s viewpoint brings me up short. I can see just how much I have changed and I hate it.

Before MS, I was always on the go. I travelled the world, had incredible adventures, and I’ve been strong, independent and vibrant. Looking at myself now, I can see I have I’ve become a shadow of that. My house has become my refuge and I spend far too much time in it. It is comforting. No one can see me trip, hold on to the banisters, drop another glass. I feel safe here.

I know the builder didn’t mean to hurt with his comment. I probably needed to hear it. I want to get my zest for life back. MS is a hefty ball and chain to drag through life, but at least if I’m facing forward, I can’t see it, even though I know it’s there.

At the moment I am standing outside the party, nose pressed to the window, watching everyone else’s lives unfolding. It’s about time I joined in again.

Tagged , , , ,
Mar 05 2013
21 Comments
The Teenager

The Teenager Speaks…

I’ve got a pretty special guest blogger today – my son, The Teenager, asked to get involved and this is what he wanted to write, no editing:

When I first found out my mum had MS, I didn’t know what it was so I thought it could’ve been anything so I was very worried.

It was the day that I was coming back from London after seeing my dad and instead of my mum picking me up my mums friends did and I didn’t have a clue where my mum was. I was told she was ill but I didn’t realise that she was in hospital.

I was dropped off at my Nana’s and she explained what was happening. I went home after my mum came back and because of the MS she couldn’t speak properly and we had a good laugh about it, taking the mick. It was still worrying me though because I didn’t really know what was totally going on.

But as time went on things got better I realised that there were worse things in life than MS and that my mum didn’t have as bad a MS as lots of people do. Me and my mum have met lots of lovely people through my mum having MS which is a good thing. In October 2011 when I was 12, we went to a MS march in the city centre which was a lot of fun and there were lots of nice people there.

I have learnt a lot of stuff through my mum having MS. Of course I still worry a tiny bit but nowhere near as much as I did. My mum’s best friend, the builder, has helped a lot and it is nice to have him as company.  After a year of my mum having MS a lot of good things have happened. My mum has been very lucky to have Campath (Alemtuzumab) treatment in the local hospital. It did sound scary at first but it helps my mum a lot.

I am hoping that in the next few years me and my mum will meet a lot more people with MS and go to lots of different MS based things. In the town centre the shopping centre has been sponsoring the MS society and they are selling ‘MS wrist bands’. A lot of my friends are now wearing these and it is nice to see support shown for this and hopefully more people will start to wear them.

Overall even though my mum has MS she is still the coolest Mum ever and nothing will ever change that.

Tagged , , , , ,
← Older posts
Newer posts →