Tag Archives: MS

Just chop it all off…

In my continuing quest to ‘try new things’, I decided to chop most of my hair off yesterday. I usually steer clear of hair salons as much as possible because:

  1. * I’m a whole generation older than most of the clients, grrr
  2. * I’m not ready for a bubble perm and tint just yet
  3. * I never, ever get the cut I ask for

Yet I was feeling strangely optimistic and full of hope as I tried a new hairdressers. I figured that if they could fit me in straight away, it was meant to be. And they could. I was given a look book, a strong coffee and the latest copy of Vogue. A child (it seemed) sashayed over and picked up my locks, tutted, exchanged glances with the child next to her and just about managed not to roll her eyes. I know, I know, I have let my whole hair-care regime lapse into grunge since being diagnosed with MS. It’s not been that high up on my list of priorities, but that’s all about to change…

The child, who turned out to be a mother-of-two, asked me what look I was aiming for and we discussed a few ideas. I like Keira Knightley’s style in that perfume advert, but then I like a lot of things that are just not going to happen. I was kitted out with a cape, plastic shoulder mat and towel and led over to the sink where my hair was washed, conditioned, massaged and pummelled into submission. Meekly, I followed her back to the chair and read a magazine until she was finished. Couldn’t look. Finally, I had to. Hmm. Ok. It’s kind of short. Oh, that’s a lot of hair on the floor. But I actually like it. It’s swishy!

I paid up and bounced out of the salon, pretending I was attracting admiring glances as I walked back to the car. Back home, I did what every woman does after the hairdressers and raced to the biggest mirror I could find, turning this way and that, mussing it up, mentally working out if I could live with it. I think I can, although my neck’s a bit cold. And I sure don’t look like Keira Knightley.

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Chocolate dreams

Chocolate haunts me. Last night a giant Jaffa Cake chased me down the road. When I woke up, I could almost taste it. I adore chocolate and it worships me in return. So much so that it hangs around my thighs, stubbornly clinging on for dear life . I know we need to go our separate ways, but it’s a really comforting friend to have around. Always available, cheap and comes in endless varieties.

Multiple sclerosis has given me a great excuse – when the worst has already happened, who cares if you treat yourself now and again? So many other things seem more important than whether I am knocking back the chocolate buttons by the bucket-load. Just had an excruciating lumbar puncture? Have a family-sized Galaxy bar. Fallen flat on your face in a packed restaurant? Order a profiterole surprise to share then grab both forks.

In a desperate bid to curb my cravings, I came up with a cunning plan. Advent calendars are on sale now. What if I were to buy one and only pop open two windows a day? Plus, I’ll get some early Christmassy vibes going. I reached Christmas Eve that same night and put the pillaged calendar out for recycling. Ok, Plan B. Eat no chocolate all week, then have a blow-out on Friday. I was cured! I ate so much of the stuff, I vowed never to eat it again, until I woke up on Saturday, noticed there were still a few Maltesers left in the packet, and I was lost in a chocolate haze once more.

I know, I could keep on trundling out the old MS excuse for ever, but where do I draw the line? I don’t want to give in just because I have MS. Perhaps because I have MS I should look after myself more, not less.

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It’s all me, me, me

Having multiple sclerosis, just how hard is it to show sympathy to people who are a little under the weather but who make a lot of noise about it? Has MS made me less compassionate, and do I somehow think no one else has the right to moan to me about their own troubles?

I only ask as two friends and The Teenager have recently been struck down by a bad cold. All three are male, so naturally ‘man flu’ has been mooted as a possibility, but to be fair, they do seem very poorly and I am trying to be sympathetic, listen attentively and give helpful suggestions. I care about these people and hate to see them ill.

But a teeny-tiny-little part of me thinks it’s a bit like expecting a poor person to empathise with a rich guy when his Porsche is in the garage for repairs. Sure, it’s an inconvenience, but it’s temporary and normal service will resume soon enough. I feel like saying, ‘ill? You’re ill? You want to see what ill is?’ How awful is that? What sort of person am I, to even think that?

I have bored my friends to tears over the last year, constantly dissecting symptoms to the nth degree, analysing lesions and spilling out my fears for the future. They have sat with me through a merry-go-round of appointments, held my hand during MRI’s and kept my glass of wine filled. So I feel very small-minded to begrudge them that little bit of extra attention and help when they need it. I have offered to drive 18 miles through the rain to bring supplies to one friend and have tucked The Teenager up in bed with a book and hot Lemsip. This is one battle the MS Monster won’t win. MS may be for life, but so are friends and family.

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Job centre blues

After burrowing around in the murky depths of disability and work legislation, I have now been assigned a Disability Employment Advisor and on Monday I went to visit her at the local Job Centre. To cut a very long, sorry saga short, I have been bullied quite badly at work ever since my diagnosis of multiple sclerosis was confirmed and I need to find a new job. Pronto. Can you believe this is still happening in 2012?

Anyway, I’m told to bring my CV and turn up at 11.20 sharp. I arrive early and am met by two doormen. Bouncers? Honestly, they stand there in dark suits, look me up and down with raised eyebrows and I’m half expecting them to say ‘sorry love, you can’t come in here looking like that’. I’m on the list though, so I’m in.

I’m directed into a vast, bland, utterly depressing room with splashes of green logo and dotted with a bewildering array of prams, shopping bags and people slumped on the sofas. Other people are hunched over large ‘job generating machines’, pressing and clicking buttons like they’re playing one-armed bandits in a pub. I pick my way through the crowd, perch on the edge of a dingy sofa and wait. And wait. The staff call people up to desks, looking bored out their skulls (well, they already have jobs) and still I wait, my CV wilting in my sweaty hand.

Finally, I’m called. We run through the ways MS can get in the way of working, my skills, my career aspirations and which hours I can work. My advisor then turns the computer screen round so I can see it. Two possible jobs. Cleaning and daytime pizza delivery. Huh?

She tells me I am over-qualified for most of the jobs they have, but due to my reduced working hours, childcare issues and disability, that’s all they have. I thank her, walk unsteadily to the door which as much dignity as I can and leave it all behind. On second thoughts, I go back, slip past the bouncers and yank a ‘How Did We Do?’ form from the front desk.

On it I write Abandon Hope All Ye Who Enter Here, shove it in the box and go.

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Firewalking. Seriously?

I had an email yesterday, an update about ways to get involved in raising money for charity. Fundraising is admirable, worthy, makes you feel good inside and funding multiple sclerosis societies and their research is vital. So when they knocked around a few ideas of how to raise this money, WHO came up with the idea of firewalking? If one of the most common and distressing symptoms of MS is heat intolerance, it seems a bit of a strange and slightly cruel choice. How about upping the ante and have people fire-eating and firewalking simultaneously?

A lot of regional societies organise these events and apparently you walk 20 feet across burning embers, with the coals reaching 1200 degrees fahrenheit ( a crematorium burns at around 1400 degrees). In the information section, the guidelines state you must be able to lift your feet and take a minimum of 8 steps at fast pace. Hmm. Beginning to sound like a Disability Living Allowance assessment – at least we’re on familiar territory. In addition, ‘you may use walking sticks or mobility aids but please be aware that these may suffer fire damage’. Hey, that sounds great fun, where do I sign up?

Instead, how about choosing something us MS’ers are good at? A sofa-thon? Who can stay on their sofa the longest (me, me!). Or MS Snap? Give people some cards, get them to write down all their symptoms, shuffle them around and play a couple of games. For the uninitiated, MS has a vast amount of symptoms, so these games could run and run. Sometimes the old ways are the best though, so if you see a sad figure forlornly rattling a collection tin, pop some money in. It could be me,..

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