Category Archives: Daily Life

Nov 04 2012
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Daily Life

MS Buddies

best friends foreverOver the past year, I’ve met a whole bunch of people I would otherwise never have crossed paths with, from all walks of life and all ages. Our common feature is that we all have multiple sclerosis.

As a side effect of this horrible illness, it’s by far the best one. Having the diagnosis gives you a free pass into a whole new world. There’s online forums, local support groups, telephone helplines and charities devoted to fighting on your behalf.

When you first meet a fellow MSer, there’s always a quick exchange of your MS journey, i.e. ‘diagnosed last year, relapsing remitting, taking Tysabri, what about you?’ before chatting away as normal. And when you say you’re tired, they get you right away. The MS fatigue, the bane of my life. I can’t describe it to people who haven’t had it. The closest I get is to liken it to a massive energy switch being switched off internally and it can strike out of the blue. You have to sleep. Now.

So there’s something really refreshing about getting together with other MSers. You belong. You don’t have to explain. You can just have a good old whinge.

I went to the local MS Society Christmas party yesterday. There was a huge buffet and a pub crooner for entertainment. We sang along to ‘Delilah’ and sat in two long rows of tables, a disparate bunch of people. I only knew a few people there, but had a good catch up with them and we kind of understand each other. I might not see them again for a couple of months, but we’ll just pick up from where we left off.

But my friends from BMS (before multiple sclerosis) are equally important. They’re the ones who tell me to stop whinging, shut up and pull me back into normal life again…

 

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Nov 03 2012
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Daily Life

Doing The Big Shop

In a bid to get my routine back on track, I got up early yesterday to go for the Big Shop. I can’t seem to plan a week ahead though, so I normally just buy some  meat, vegetables, pasta and rice and cobble meals together on a day-to-day basis, always having to buy extra ingredients each day.

One of my first symptoms of MS was being unable to plan anything at all. My brain just would not compute basic things and I got confused easily. Food shopping was a nightmare. I would stand and stare at the rows of food, unable to decide what I needed and end up grabbing random things and chucking them in my trolley. I couldn’t even follow simple recipes so we lived off baked potatoes and microwave meals for a long while.

But, I was upbeat and optimistic. If I stuck to the basics, I couldn’t go wrong. I parked up, glared at the builder’s van taking up two disabled spaces and marched into the store. I wandered up and down the aisles, panic rising. So many special offers, so many meal deals. Three things for a tenner, five things for a tenner, buy one, get one half price. And Christmas carols playing in the background.

I could feel my brain melting. As I circled the aisles again and again, I couldn’t choose anything. Deep breath. Get some salmon. Get a big bag of potatoes, some carrots, few tins of tuna. Stand for ages in front of the ten pound meal deal. Two starters, two mains, one dessert. Mathematical equation. Is it me or is it hot in here?

Finally, I make it to the till where the checkout woman chucks my food through so fast, I get nervous, drop things, can’t pack the bags. Hands don’t want to hold anything today, but mission is finally accomplished. When I get home, I stagger into the house, laden with bags, rain pouring down and trip over the cat.

It’s bizarre how the most simple, taken-for-granted tasks can become an assault course when you have MS. I was planning to make cottage pie for dinner, but the recipe is confusing the hell out of me and I forgot the Worcestershire sauce…

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Oct 30 2012
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Daily Life

The Teenager is Back

After three days of peace and quiet, The Teenager is back. I missed him like crazy, but being an off-duty parent has been bliss.

I cleaned the house from top to bottom on Friday and it’s stayed just the same. The towels are still hanging up, the loo roll doesn’t disappear quite so fast (does he eat it?) and the washing machine is taking a well-deserved break. I don’t walk through clouds of Lynx. There’s been no homework supervision, driving to rugby games or food shopping for an army.

On his way back home though, the texts came thick and fast:

Can I have a sleepover? No.

Can I have a tenner for the cinema, and bus fair? Maybe.

Has anyone been in my bedroom? Yes, me. Emptying your bin.

Did the cat miss me? Um, I guess so.

At the supermarket earlier, I made the mistake of calling him to ask what he wanted for a welcome home tea.

‘Pizza. But it has to be Chicago Town’.

‘Ok, wait til I get to the freezer cabinet. Right, which one?’

‘Cheese, but not the four cheese one.’

‘They don’t have that. Pepperoni?’

‘No.’

‘Duck? Sloppy Joe? Beef? Mexican?’

‘Nah. Just cheese.’

‘They. Don’t. Have. That’.

‘I suppose I’ll have to have the pepperoni then.’

I get to the checkout. The Teenager calls. He’s changed his mind, he’ll have the four cheese one. The freezer cabinet is at the other end of the store. I buy the Pepperoni.

There’s no such thing as an off-duty parent, is there?

 

 

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Oct 21 2012
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Daily Life

How to Drink with MS…

Kermit DrunkOne of the more socially annoying aspects of having multiple sclerosis is that I am suddenly a very cheap date. A couple of glasses of my favourite tipple, dry white wine, and I’m zooming away into oblivion. Or more often than not, maudlin and tearful. ‘Why meeeeee’, I’ll wail, filling up my glass to the brim and wiping my smeared mascara all over my face. ‘Don’t wanna have MS, s’not fair’.

So, as with many other things in my life now, I have to be creative and think of new ways of doing things. I have now solved the alcohol conundrum. And I no longer argue with lamp posts.

I have cunningly switched from white wine to red. I can’t drink red wine quickly, so I drink far less than I would if it were white. Clever, eh? Plus, it gives me a much more mellow feeling than white, so rather than wailing, I simply ponder how my life has changed. Like a proper grown up.

On Friday night, with The Teenager at a sleepover, I put this new-found knowledge to the test. My friend took me out to a lovely old gastro-pub in the countryside. We shared a bottle of red. Lovely. And we had a very grown-up sophisticated conversation, catching up on our week. Sipping my wine thoughtfully, I made interesting and insightful comments.

At the next place, a cafe-slash-wine bar (car now safely deposited at home), we shared another bottle and had yet more intelligent conversation. And I even managed to go to the loo without stumbling. Finally, we had a night-cap at a pub, sitting outside. I felt smugly superior to the clearly-drunk women staggering around, clutching glasses of white wine, yelling at passing cars.

I was feeling very proud now, and congratulated myself on being such a responsible adult. So maybe we shouldn’t have popped into the late-night supermarket on the way home .

Waking up the next morning with a dry throat and slightly trembling hands, I went downstairs and found the previous night’s spoils. A packet of Hallowe’en cakes, two supersize bags of crisps, an unopened bottle of red wine and an exercise magazine. Muppet.

 

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Oct 18 2012
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Daily Life

Hallowe’en Is Coming

I know it’s a bit early but I adore Hallowe’en. I used to love cutting witch shapes out of black card and making ghosts from scrunched-up toilet roll with The Teenager when he was younger. But I especially loved carving a pumpkin, cutting out a lopsided evil grin and having it lit all evening until it started to smoulder.

We didn’t really ‘do’ Hallowe’en as kids. I used to have a Canadian penfriend and I was puzzled when she sent me a Hallowe’en card, so much so that I took it into school the next day where it was handed round with reverence and wonder.

Now The Teenager is way beyond Hallowe’en crafts, laughs at my Happy Hallowe’en wreath and would be seriously worried if he caught me making those ghosts and witches, just for old times sake.

I am determined to keep up my pumpkin tradition no matter what The Teenager says, so yesterday I bought one, lugged it home and looked up pumpkin pie recipes. I do this every year and every year I look at the pile of gunk I’ve just scooped from the pumpkin then sweep it all into the food recycling bin, vowing to do it next year. Promise. A few years ago a yummy-mummy friend of mine separated and dried out all the pumpkin seeds in the oven, then sat down and made a necklace out of them with her daughter during their ‘mummy and me’ time. We are no longer friends, the pressure was too much.

Anyway, the pumpkin is finished. It’s not artistic, more deliberately naiive for that authentic, child-in-the-house look. Can’t be seen to be taking it too seriously. And The Teenager has just told me he is going out trick or treating. I tried to tell him he might come across as quite threatening, being  six feet tall, but I was just talking to the hand…

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