Category Archives: Daily Life

May 09 2013
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Daily Life

But Is It Art?

IMG-20130508-00148It was a lovely plan – a day spent at the art gallery.

I imagined myself wandering around (artistically), lost in thought, occasionally throwing out deep and insightful comments to my companion in reverential, hushed tones.

He would be impressed by the breadth of my knowledge, adding musings of his own.

Afterwards, we would sit in the cafe and contemplate the wondrous art we had seen over double-shot espressos and hand-crafted scones.

I guess we just weren’t in the mood. We scooted through the galleries, stopping short at odd, randomly-placed sculptures before moving on to the modern art section. We whizzed past each picture:

‘Nah.’

‘What’s that supposed to be?’

‘The Teenager could do better than that.’

‘Hey, check this out, it’s supposed to represent the dichotomy of suffering in an existential landscape’ (a canvas with two blobs on it).

‘Wow, this guy was pretty radical, he painted the frame too.’

‘Lunch?’

‘Yeah, let’s go.’

We ended up by the coast and looked out over the sea whilst waiting for the restaurant to open. My friend had a mischievous grin as he started bouncing in the seat of his wheelchair.

‘Seagull! Want seagull!’

‘Shut up, people are looking.’

‘Ice cream, ice cream, ice cream, ice cream.’

‘Shhhhhhh. People are staring.’

‘That’s the whole point. They probably think there’s something wrong with me anyway, sitting in a wheelchair. Wanna go on the boat. Boat, boat, boat. ‘

Thankfully, lunch passed without incident and we discussed everything and nothing about living with MS and whether it was acceptable to poke fun at ourselves and our disabilities.

We decided to round off the afternoon with a coffee. Queuing up, that mischievous glint returned to his eye. In a loud voice he announced ‘Aww, you’re the best carer I’ve ever had.’

And no, the ground did not open up and swallow me…

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May 02 2013
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Daily Life

The MS Lottery Of Treatment And Care

Lottery of treatment and careOn Tuesday I went to the Welsh Assembly in Cardiff Bay to attend the launch of the MS Society’s new report, ‘A lottery of treatment and care’.

After going through security (where I had to remove my belt, very embarrassing for muffin-toppers like me) and picking up my ID badge, it was time to catch up with friends over lunch.

The buffet was excellent, but I was very well-behaved and didn’t sneak a little bag in to take some home, even though I was tempted to swipe a couple of the gorgeous cakes.

The launch went perfectly, my only gripe being that there weren’t enough chairs set out and after standing/leaning for a while, I had to move to a sofa at the back of the room, but I still managed to see and hear everything.

The report is hard-hitting and in places, shocking. I had no idea there were only FOUR neurologists who specialise in MS in the whole of Wales, and they are all based along the M4 corridor in the south. Perhaps this plays a part in the fact that six out of ten eligible people do not take disease modifying treatments. In Europe, only Poland and Romania have a smaller proportion of people with MS taking such treatments.

Of particular interest to me, only a quarter of people with MS who are of working age are employed, compared to three quarters of the wider UK population. My being sacked for having MS highlights the fact that discrimination in the workplace is very real and is still happening, despite a raft of measures put in place to prevent this.

The MS Society is calling on all four governments in the UK to ensure that every person with MS has a personalised treatment, care and support plan, with two comprehensive reviews.

We should all read this report and we should all be angry. Yes, there have been some fantastic developments over the last few decades, but if access to services and drug treatments are limited and unfairly distributed, we need to let the decision makers know.

All of us can do something, even if it’s just signing a petition. We need to keep MS firmly in the spotlight.

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Apr 30 2013
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Daily Life

A Back-Handed Compliment

But You Look So Well‘But you look so well.’ A loaded sentence most of us with MS hear at some point.

I hear it a lot, along with ‘but I heard you were ill’. The complex nature of my, so far, mostly hidden illness.

What they don’t see is the work that goes on behind the scenes. Yes, I look fine for that hour or so. No, they don’t see me taking ages to get ready or lying on the sofa afterwards. Or the long evenings spent alone at home, too tired to go out with friends.

I’m proud that I still want to look my best, but not fitting the physical perception of the ‘sick role’ can distort the view people have of me. I’m used to it, or so I thought until Saturday.

I was at an MS meeting. At the end of it, we gathered around in groups for a coffee. I was talking to a friend when suddenly a woman I had never seen before pushed in and without any greeting, asked if I had MS.

‘Um, yes?’

She looked me up and down before saying, ‘but you look so well.’

It was the ‘but’ that threw me. She didn’t say, ‘great to see you looking so well’ or ask how long I had been diagnosed. I felt immediately guilty, as if I had to justify myself. I had always thought that I was ‘safe’ with other people with MS – no need to explain nerve pain, fatigue or the general fed-upness that goes with MS.

I told her that I had been having relapse after relapse and had been offered Campath (Alemtuzumab) treatment and touch wood, no relapses since last May.

‘Relapses? Hah. I never had any’ she said.

‘Oh. Is that good?’

‘No! I’ve just gone downhill. I have primary progressive MS. We don’t have any miracle cures. Nothing can be done for us, all the research, all the meds go on the ones with relapsing remitting MS.’

Awkward. What do you say to that? I made my excuses and wandered away. I wasn’t in the mood to be challenged. I went home deflated and upset. I did see it from her viewpoint, but it was the abruptness of the exchange that threw me. I don’t want to justify myself to other people with MS. I have to do it enough to everyone else.

I went home, dragged my duvet onto the sofa and fell asleep. 4pm and the day was over.

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Apr 28 2013
16 Comments
Daily Life

Wheelchair-Unfriendly

wheelchairHow can a large object, weighing around 35 pounds, become magically invisible without asking Harry Potter? Easy – when it’s a wheelchair.

I met a friend for lunch and shopping on Friday. He just so happens to use a wheelchair. Cardiff has a fairly wheelchair-friendly city centre, with wide streets, accessible shops and restaurants and large, open spaces. That wasn’t the problem, it was the people.

To be fair, the shop assistants and waiters were lovely. We went to the Apple store (heaven for him, boring for me) and it was a breeze. Then Paperchase (heaven for me, incomprehensible to him- why would anyone need drawing pins shaped like ladybirds?) and it was great. We had a slight mishap in a cafe when my friend reversed into a table and knocked over a tray full of coffee cups, but those wheelchairs have a surprisingly wide turning circle.

What really annoyed me though, as we were stumbling/wheeling through town were the other pedestrians. It was soon apparent we were inconveniencing them by having the cheek to bring a wheelchair into town. There were tuts and sighs, doors left to slam in our faces, people shoving past us as if we weren’t there. It was impossible to walk/wheel side by side, so I took to pointing wildly at the general direction we were heading in, trying to keep track of where my friend was.

He was nonplussed. He’d seen it all before. He especially enjoyed watching people walk straight towards him engrossed in their mobile phones. He told me he’d taken to scanning metres ahead and had learned to weave in and out of the crowd, but it’s a lot harder to do when you’ve got someone else with you.

He just smiled wryly when I muttered ‘so RUDE’  and huffed and puffed at someone for the umpteenth time. It shocked me. I wish I had been braver and asked some of the people what their problem was. I like a good argument.

Accessibility for wheelchairs may have changed for the better, but attitudes still have a very, very long way to go.

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Apr 18 2013
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Daily Life

Adorable Dora

Dora the bonkers catThe Teenager and I had a very long chat the other night and we decided to adopt another cat as soon as possible, so I went to Cats Protection yesterday.

He wanted to call the new cat ‘Dog’ or ‘Jam’. At a push, ‘Enchilada’. Hmm. This is the same kid who named my mum’s cat Yoda eight years ago.

Anyway, at the centre there were four long rows of the cutest, saddest cats. Heartbreaking. Half of them were clambering behind the glass, the other half hiding or sitting with their backs turned.

Some of them had sad histories. One had been kicked so badly in the stomach that she had to have an operation. One had lost an eye. Many had been abandoned and some were handed over by owners who could no longer afford to keep them, due to the recession.

I looked around. So many cats, but one stood out. Dora. A dinky little all-black female. Five years old, with a bonkers glint in her eye and I took to her straight away.

Back at reception I handed over my ID, my bank card and my details. I filled in numerous forms, read the small print, promised to take her for her second injection and swore allegiance to Cats Protection. I joked that there was less paperwork when I took my son home from hospital after he was born but that didn’t go down so well.

Dora came through in her basket and we whisked her off to the car. Back home, she has settled in incredibly quickly. When The Teenager came home from school, she jumped straight onto his lap. It feels as if she has been her forever.

Dora could never replace Bubble. She’s her own little character. She seems slightly crazy, but I like that. Having a crazy cat in a crazy world is no bad thing.

p.s. Dora just would not stay still for a second to let me take a proper photo – think she was high on catnip. And we’re going to call her Isadora…

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