Category Archives: Media

Jan 31 2013
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Media

Love Your MS Nurse? Tell The World…

The ‘My Super Nurse’ campaign for 2013 will be starting very soon, leading up to MS Awareness Week in the Spring, and the MS Trust really want to hear from you. The campaign goes live on 7th February, when you can nominate your nurse online.

But you don’t have to wait til then – the MS Trust would like you to write something about how fabulous your MS nurse is or, if you’re camera-happy, record yourself talking about them! It’ll only take a few minutes – just use your digital camera, your phone or your laptop, say something nice and send it to them. Click here – ‘My Super Nurse‘  for more details.

I spoke to a lovely guy at the Trust yesterday, raving on (intelligently, I think/hope) about how much MS nurses mean to me, so if you feel the same way, join in. You may be aware that some MS nurse posts could be under threat, so let’s all gather together and prove to the powers that be just how much they help us out.

I am lucky. I live in a city and have a whole team of MS nurses at my local hospital. Even though I have my own dedicated nurse, I know all the MS nurses and they are quite simply amazing. They remember every detail, every symptom. They care. Passionately.

My journey through the whole system, from first bizarre symptom to diagnosis to treatment has been made so much easier with their support and guidance. I hate the idea of calling nurses ‘angels’, but in this instance I can make an exception. I’m not quite sure where I would be without their calm, caring manner. I have called them in tears, I have left garbled messages on their answer phones and rung them with the weirdest symptoms. They have always been there for me.

So, let’s give something back? Take five minutes, write or record something and send it in. Spread the word, tell your friends too. We need our MS nurses. They are our lifeline.

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Jan 23 2013
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Media

That Annoys You? Oh Really?

I was quite happily waiting at the doctor’s surgery for my monthly blood test yesterday, when I picked up a newspaper. There was a full-page article devoted to things that ‘make women seethe.’

Interest piqued, I read further, expecting to see examples such as schools still closed since last Thursday, the shocking price of petrol or the lies men tell on dating websites (and the 10-year-old photos they post up). Well. Oh, to have a life where stepping on Lego or forgetting to turn the dishwasher on was all that made me curse.

Apparently, the following everyday annoyances can make a woman rage:

  • Misjudging kettle water levels
  • Getting an itchy nose while washing up
  • Useless ribbon loops sewn into clothes
  • When the wind blows your hair into your lipgloss
  • Getting a full bag out of a pedal bin
  • Catching your sleeve on a door handle

Well, excuse me if I don’t rush over with tea and sympathy. I also object to the misogynistic tone of the article, which places women fully in the ‘helpless, silly people’ category, where all we worry about is not being able to pull our wellies off or how to deal with tangled wire coat hangers. Let’s leave the serious issues to the men, don’t worry your pretty little head, there’s a good girl, eh?  This may as well be journalism from the 1950’s.

Can you imagine a similar article, yet written about men? Would men really rage about scratchy clothes labels, a tissue in the wash or needing to drain a ‘no drain’ tuna can?

Anyway, in the interest of balance, here’s my MS list of everyday things that make me seethe:

  • People thinking I am drunk after half a glass of wine
  • My robot, wonky walk when my legs won’t work properly
  • Waking up half-blind
  • Tripping over my own feet. Repeatedly.
  • Reaching for my coffee cup and knocking it over
  • Not being able to wear high heels
  • Trying to explain fatigue for the zillionth time

I’d better stop there. I could go on. And on. But I just got lemon juice in my eye and I am seriously raging…..

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Dec 20 2012
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Media

Does MS Make you a bad mother?

This is not a post about the horrendous shootings in America. This is about a news story that appeared a few days ago, reporting that Nancy Lanza, the mother of Adam Lanza, had been diagnosed with MS – read the article here.

Two things bother me about this ‘story’. First, the headline screams out MS, but does not actually mention much about MS at all. So why the sensationalism? What does the fact that she had MS add to this article? Or rather, what is left unsaid, hanging in the air?

Second, the article states twice that she ‘suffered from MS’. The use of the word ‘suffer’ implies a victim, a helpless person. I agree MS is far from pleasant, but I don’t feel I suffer from it and neither do most of the MSers I know. We live with it and we are not victims.

My heart sank when I read the story and I felt tainted by it. Media representation of people with MS is a hit and miss affair. Recently, us MSers have been lucky. Jack Osbourne has raised a huge amount of awareness by telling the world he has MS yet even he had to fight back against media articles stating he was dying from the illness. Amy Winehouse’s mother has MS and raises funds for research. Mitt Romney’s wife Ann has also put MS on the world stage during the recent American elections.

Now though, MS has been inextricably linked to one of the worst mass shootings in an American school. The article does state that she was a ‘devoted mother’, so perhaps we are being urged to see the pathos in the family situation. A dedicated mother, battling on to help her son, despite her MS. Yet this too is patronising and I find it uncomfortable to see news stories like this in a week that will bring funeral after funeral of innocent children.

There are many villains in this story, but MS is not one of them.

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Dec 15 2012
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Media

DLA – A Bit of Breathing Space

Good(ish) news – the process of forcing all those claiming Disability Living Allowance DLA) to undertake new assessments in order to be eligible for the new benefit, Personal Independence Payments (PIP) has been slowed down. Esther McVey, a works and pensions minister has confirmed that all those with an indefinite award will not be reassessed until October 2015 at the earliest, after the next general election (read more about this here).

Most MSers claiming DLA have indefinite awards. Unless the Department for Work and Pensions knows something we don’t, MS lasts for life. So why reassess people with MS at all? It is a degenerative neurological illness and it is not, as yet, reversible. There are thousands of people who fear that losing this benefit will have a devastating impact on their lives. Having the higher rate of mobility allowance also automatically makes you eligible for the Motability scheme and a blue badge, so if people were to lose their benefit, or have them downgraded, they would also lose these components.

Is this what the government wants? To shove disabled people back into their homes, without means to live independently, travel independently and take part in society? A lot of us MSers work, study and contribute, despite the problems MS brings and we are proud to do so.  I have friends who tell me that their DLA means the difference between just about surviving and sinking way below the poverty line.

Having a disability like MS brings extra, often unforeseen costs, so the revised timetable is good news. The MS Society and many other pressure groups are urging the government to look again at the need to reassess MSers. 63,000 people with MS, an irreversible condition, claim DLA. But then so do  21,000 people with drug and alcohol problems. Go figure…

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Nov 07 2012
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Media

BareFaced Cheek

make upGreat news girls! Children in Need is launching its first ‘BearFaced Day’. On this day, you go without any makeup to help raise money for disadvantaged children, so put down that mascara and hang fire with the lippy.

To persuade us, Louise Redknapp, Lulu, Julia Bradbury and newsreader Sian Williams have been photographed by Rankin, (apparently) without a scrap of makeup on, ahem. Rankin, the world famous photographer. These woman no doubt also have access to world famous beauticians, facialists, dieticians. Who wouldn’t look radiant? I’m sure they don’t do their own housework or ironing or cooking either. They have no money worries, no fear of redundancy, no anxiety about retiring on a decent pension.

So why are they pulling rank and shoving this quite literally in our faces? Is it not enough to flaunt their exalted status to us minions, now they want to strip us of our one last defence against an often cruel world? Is it a case of, ‘see how beautiful and rich I am, you common little peasant, you?’ It is certainly a case of extreme vanity, if nothing else. There is something quite uncomfortable about rich people asking us hard-pressed peeps to part with our money. And in such an audacious manner.

There is a charity which visits woman undergoing breast cancer surgery, giving them makeovers. This has been shown to improve their self-confidence and feelings of self-worth. Can you imagine the uproar if a breast cancer charity fundraised by asking women to go without make up? Women going make-up free and raising funds for disadvantaged children is a very tenuous, slender link, based solely on the double bear/bare sound. Very clever, marketing guys, just jog on, eh?

In my case, I would frighten children and sentence them to years of therapy if I went without my daily slap, which kind of defeats the purpose. I don’t have cancer, but with MS ravaging my confidence, I rely on my box of tricks to set me up for the day. With a bit of makeup on, I can walk (stumble) with my head held high.

However, I would take part in ‘BearFaced Day’ on one condition. That I could wear a Pudsey costume the entire time…

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