Nov 23 2012
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Symptoms and Treatment

An Unwanted Duvet Day

Just when I think I’m doing pretty well after the Campath (Alemtuzumab) treatment I had over the summer, along comes a day when it all comes crashing down.

I’ve been feeling more and more tired over the week, the numbness and tingling has increased, I’m stumbling more than usual and I’m not in complete control of my body. I haven’t had a week like this in months and I hate it.

Yesterday, I woke up, got dressed, saw The Teenager off to school, went to the shop for a paper and some yoghurt then went home and back to bed. And that’s it. This is as bad as the darkest days I had at the beginning of the whole MS business. Will it last? Is this just a blip? I can’t even begin to say the word ‘relapse’ out loud for fear of jinxing myself.

Everything is difficult. I lie for hours, knowing I need to get up and work, cook lunch, catch up on phone calls. But some inner force is pinning me to the sofa. My limbs are heavy, I feel like I’ve been run over and I’m getting worried. Lunch was hysterical. I only had pasta and a jar of pesto in the house and normally I could rustle that up in five minutes. Yesterday, it took me an hour. Set the water on the hob, go and lie down. It boils, I put pasta in, go lie down. Pasta boils over, turn heat down, go lie down. Pasta is cooked, I leave it in the pan for half an hour and go lie down. I drain the pasta, add the pesto and heat up. Leave on side, go lie down. Re-heat in microwave. Go lie down and fall asleep.

If this sounds incredibly boring, it is. It’s soul-destroying. And lonely. I dread seeing The Teenager’s face when he comes back from school. He will take one look at me and know. Mum’s tired. How depressing.

Fingers crossed this is temporary and it will be business as usual very soon. I will cook The Teenager a mouth-watering roast at the weekend, I will do the housework (even the ironing), I will dust away all the cobwebs I counted while I lay on the sofa. But for now, I’m off to the sofa for a quick lie down. Again.

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Nov 22 2012
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Daily Life

I Used to Like My Cat

When he  was younger I teased The Teenager that when we left for work/school, the cat would jump onto the sofa, switch the telly on and watch QVC. He believed me for years, bless him, but recently I’m beginning to think it’s true.

Now I’m working from home, the cat is engaged in a campaign of warfare against me for invading her territory day after day.

Back in the bad old days of MS, when I was having continuous relapses, the cat was an angel. She would curl round me as I lay on the sofa, lie next to me in bed at night and she was just generally sweet and comforting. If she could have made dinner and washed up, I’m sure she would have.

Now though, she torments me. I wouldn’t be surprised if she changes the locks next time I leave the house. I sit at my desk trying to work and she is there, shooting me evil looks. I make a cup of coffee and I find her next to the kettle. I go upstairs to fetch something and she is on my bed, glaring at me. The only time she seems happy is when I put my coat on to go out. She trots around the room, purring. When I get back in, she starts the weirdy-staring thing again.

And she miaows constantly. It used to be cute. The cat rescue place warned us she was ‘a talker’ when we chose her. How lovely! How sweet! Now it drives me to distraction. I snickered when she miaowed so hard she lost her footing and fell off the window sill, but the next day she threw up all over my sofa.

So we are uneasy house-sharers at the moment. We circle each other, neither of us willing to give way. She knocks over ornaments and picture frames. Deliberately? She wants out, then she doesn’t. Then she does. Then she won’t go out the back door, insisting she goes out the front window instead. She drapes herself on the bottom stair. She lays mangled, decapitated birds and mice by the back door and once brought a live mouse inside. We still can’t find it.

I’ve got news for her though. I was going to buy her a Whiskas stocking for Christmas, but she’s just been scored off my Christmas list. So there.

 

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Nov 21 2012
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Work and Studying

The Christmas Work Party…For One

A delicious thought struck me the other day. This year, for the first time in well over a decade, I will not be going to a Christmas work party. Technically I am still employed until the end of December, but I’m guessing I’d be as welcome as a new MS  lesion on an MRI scan.

This means I won’t spend days (weeks) agonizing over my party outfit, striking the right balance between chic and trashy. I won’t need to find a ‘jolly’ pair of flashing Christmas tree earrings, or drape tinsel round my neck and I won’t need to get involved in a Secret Santa present-swap, so no sneaky trip to Poundland then (I highly recommend the candles and picture frames – wrapped in expensive paper, who’d know?).

Most of the work parties in recent years have been excruciating exercises in ‘office bonhomie’. The boss is generally dressed down in dodgy ‘cool’ clothes, they’ve put twenty quid behind the bar and we all sit there with a limp cracker and a single party popper. Conversation stumbles along until enough cheap alcohol is consumed and it’s at this point that all hell usually lets loose.

Old resentments spring up, snarky comments are traded and the boss just sits there, eyes glazed,  trying to get us all to tell rude jokes. Inevitably, one or more of the women will rush to the loo, crying, followed by a gaggle of other women, eager to be the first with the gossip. With Christmas carols playing on a loop in the background, one or two will attempt to grab random drunken men for a dance and the smokers will decamp with their drinks to the back terrace and remain there the rest of the evening.

Am I sad then, to be missing out on all this fun? Er, no. It’s a relief. So I have decided to throw my own party for one. I’ll go to Waitrose for a nice selection of party nibbles, pour some Cava, put Cliff Richard’s Christmas CD on and have a fabulous time. There’ll be no need to dress up, so I’ll have a ‘pyjama party’ dress code. There’ll be no embarrassing photographs being emailed round the following morning unless the cat has developed opposable thumbs and there will be a sense of relief not to go to the office the next day only to be met with raised eyebrows.

So, to all of you who have an office party to go to, good luck and raise a glass to me…I’ll be thinking of you.

 

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Nov 20 2012
6 Comments
Blogging

MS Bloggers

Just a quick blog post today – shouting out for MS bloggers to join me here. Blogging is all about speaking out, hooking up and building a community. Lots of you guys have spread the word about my blog so I’d like to return the favour.

Or if there is a blog you really like reading, let me know!

I’ve added a new page to my site, ‘MS Blogs’, so if you write a blog about MS, just let me know and I’ll put your link up.

 

 

 

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Nov 19 2012
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Symptoms and Treatment

Walking Stick Chic

Gandalf has one, Charlie Chaplin was famous for his and Brad Pitt was recently spotted with one. So why am I so reluctant to use a walking stick when I need to?

This came up for discussion last week in the Fatigue Management course, when I wailed about how scary it was to walk to the loo in a busy pub or restaurant (I have been known to trip and fall spectacularly, in full cartoon-mode). I can sit there for hours, carefully plotting the best route, working out how slippy the floor is and counting how many people I could quite possibly fall over in front of. If I don’t know where the loos are, I will send a friend first and extract every last bit of information from them. ‘How far did you say? Big plant to watch out for? Carpet or wooden flooring?’. And so on.

The suggestion from the group was that I should carry one of those folding ones in my bag and just use it for extra balance when I need to. It’s a huge psychological step though, isn’t it? It’s almost the same as the first time you go outside with a pram – you think everyone is looking at you and it takes a while to get used to it.

And how on earth do you actually walk with it? I think I may need a few trial runs. I will go out when it is dark, in dark clothing to a very dark place and give it a go. Do you put the stick down first, then walk or walk then put the stick down? What’s the rhythm? What if I trip over the stick?

I had a chat with a friend a while back about this conundrum. She put her hand on my arm and said, ‘Daaaarling (she’s a bit posh), never fear! Why do you think all the best ballet teachers have one? It gives them authority, it is chic and makes a statement’. Fair point. So the last time I was in town, I scanned the crowds, picking out every single person with a stick. I failed to find a single chic person. The majority were eligible for free bus passes. Where are all the young people with sticks? Where do they hide?

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