Monthly Archives: February 2014

Dragging My Feet….

don't panicYou know when you wake up with a brand spanking-new MS symptom?

That heart-stopping moment when all your worst fears come crashing in on you?

Yup. This happened last week. A normal morning – coffee, cat, catch-up with paperwork, countdown to waking The Teenager.

Except that morning was different. My foot refused to play fair. It gave up the ghost, schlepping behind me like a stroppy Teenager (and boy, do I have experience of that).

Panic rose and I quelled it. The next day, same thing. And the next. A new symptom. Probably every person with MS’s worst nightmare.

I decided to beat it at it’s own game, determinedly lifting the naughty foot with every step. Only problem was, I looked ever so slightly odd. Exaggerated. Like I was walking in slow motion to the ‘Chariots of Fire’ theme tune.

I ran it past the MS nurse (the problem, not my foot) but declined an appointment. ‘I’ll be fine!’. I ran it past the chiropractor who urged me to call the MS team. ‘I’ll be fine!’ I put it out my mind. But it stayed and I dragged my foot round the house. Finally, I took the offered appointment.

What’s worse? Being told it may be a relapse or it may not be a relapse? It doesn’t really matter either way, I won’t take any more steroids. I can’t bear the thought of waking up at 2am and having a strong compulsion to dust all the lightbulbs and clean the skirting boards, such is the bizarre energy those tiny tablets give me. Plus they destroy taste buds. And I pack on the weight no matter how many edamame beans I eat.

So I am in a kind of weird limbo. I worry that the endless relapses have found a sneaky way through the Campath treatment I had. I worry about my mobility – the defining point of being accepted as ‘relatively normal’ within societal boundaries.

Above all, my dodgy, annoying, schlepping foot has dominated the last week. I am panicking. Ever so slightly.

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If You’re Happy And You Know It, Shake Your Meds….

Nurse RatchetI had my annual medication review at my doctor’s yesterday.

I survived the bloke who coughed all over me in the waiting room as he read a leaflet about the flu jab pinned to the notice board above my head (no hankie, yuk).

And the toddler who toddled in my direction, licking snot from his nose in tandem with every step, eyes fixed eerily in my direction,a mangled teddy in his hands.

The doctor was lovely. We rearranged my prescription, I waited for it to be printed off and I left,relieved that it would be another year til I was there again.

Buoyed up with the ‘how easy was that?’ sensation, I parked outside the chemist to pick up my repeat prescription.

Big mistake. Huuuuuuge mistake.

The chemist is tiny. Opening the door, I counted eight people standing around waiting. I clutched my prescription, desperately seeking someone who would take it from me. Finally, a woman made her way through the crowd, plucked it from my hand and peered at it.

‘Oh! A change of prescription. Let’s see.’

(I’m slowly slinking backwards into the wall of decongestants)

‘Address?’

I gave it. And my date birth. And my favourite TV shows.

‘Ah. I see you’re still on the BLADDER medication. Yes?’

(the assembled congregation are leaning forward, eagerly anticipating my answer) ‘Um, yup, if that’s ok, thank you very much.’

‘And the…let me see… NERVES?’

(wilts in corner, dying ever so slightly). ‘Not nerves, neuropathic (whispers) MS’.

‘AHHHHH.’

(she peers over her glasses, looks me up and down, as do the assembled crowd).

‘Now. What about THIS one?’

‘Um.’

I scribble my signature on the repeat prescription and joke with the woman next to me, ‘haha, being ill is like a full-time job.’ Lol.

She stared at me, devoid of any compassion, no doubt thinking back to the Benefits Row special live on Channel 5 the previous night.

I turned and absorbed myself in the Peppa Pig display, wondering if I should buy some bubble bath, just to look….normal.

Finally, I was rescued. A bag of medicine was thrust into my hands.

I fled.

I love chemists. They helped me through The Nit Crisis (not me, The Teenager, when he was The Child) . They were there when I needed cough medicine. But confidentiality?

Well. My name is Stumbling, and I take bladder medication…

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Access Denied

Randy McNeilCanadian Randy McNeil is my guest blogger today.

He was diagnosed with MS in 1999 and was given chemotherapy treatment, Clyclophosphamide.

After having to give up his career as an industrial millwright mechanic, he returned to college to study community justice and services. And this is where he was confronted with a new set of problems…

Wheelchair ramps – they can be the best thing. When I was still walking, I was happy to see them becoming more commonplace for people with mobility challenges. Then in 2006, MS changed my life by taking away my ability to walk. Suddenly I now had a disability and a new way of life bestowed on me.

I accepted this and got an A-4 Titanium wheelchair, started a new journey and went back to college.

Whilst there, a new building was being constructed and I thought, great, it’ll be built with a better standard of accessibility than the other buildings on the campus. In fact, it was worse. I got the construction superintendent to come over to the ramp in question and challenged him. His reply?

‘I’m not going to argue with you, it’s been passed by the building inspector.’

‘Well get into this wheelchair and show me how you can use the ramp.’

‘I can’t do that.’

‘Why?’

‘I’m not as strong as you are….’

  • Unable to get any further response, I went to the newspapers – read my story here and see for yourself the excuses they came up with!
  • After graduating, I began travelling around on public transport and discovered a problem with community accessibility – just because a bathroom has grab bars does not make it accessible. Again, I got nowhere and contacted the newspapers. This got results immediately and they changed the bathroom stall on the same day! Read about my success here.
  • Next, I took on the local mall – why should I take my life in my hands just to get there? Read what happened next.

Why stop there? I have now started a global petition to persuade Google to include an accessibility option on its worldwide maps. Please take a few seconds to add your signature.

Together we are stronger.

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