Category Archives: Daily Life

Just Another Day in MS Land

Here we go again. The relapse is-it-or-isn’t-it game is back. After a week full of energy, I am once more being held hostage by the sofa and daytime television. I am absolutely, ridiculously exhausted beyond reason.

I spoke to the MS nurse about this and she said that it was unlikely to be a full-blown relapse, more a temporary increase in symptoms, given that I had Alemtuzumab in the summer. This is supposed to cut down the relapse rate and therefore slow down the progression of MS. My spirits rose, until she added that it could still be a relapse though. I need to monitor things until I see the neurologist next week for my 6-month check up, but she thought the symptoms are more likely to be due to the stressful work situation.

Luckily, I had already completed my work quota for the week, the house was clean and The Teenager’s rugby kit had been washed, so even though it was incredibly boring , at least I wasn’t panicking. Too much. And when I say boring, I mean really, really boring. Too tired to read, I watched inane telly – lots of people with antiques, people rubbing their hands in glee at buying a cheap house at auction, shouty people shouting at other shouty people and ghoulish people chasing after other people’s inheritances.

When I wasn’t watching telly, I was sleeping, as I was too bored to do anything else. A whole packet of chocolate toffees somehow disappeared. I once again counted the cobwebs on my ceiling and admired my Christmas decorations from the sofa. The biggest problem I faced was cooking dinner when The Teenager got home. I had bought ingredients to make spaghetti carbonara . Not that difficult – bit of cream, Parmesan, bacon and a couple of eggs.

Feeling like I’d been run over by a juggernaut , it became a Herculean task. I briefly wondered if he would notice the difference if I made Super Noodles instead. At the last minute, I decided to kill two birds with one stone. Cancel the cooking, put away the ingredients and collect some Teenager brownie points. We had a chippy. I will make the carbonara tomorrow.

 

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Christmas All Wrapped Up

Well, possible relapse to one side, I am sadly excited to report I have Christmas all wrapped up.

This time last year, I was ‘lucky’. I was on my second course of steroids for yet another relapse and I was flying. I couldn’t sleep, I had extreme amounts of energy and I was absolutely buzzing. I would wake at 4am every morning and, possessed with a demon drive, I wouldn’t get to sleep til gone midnight. My house has never been so clean – all that energy had to go somewhere.

The lightbulbs were dusted, the skirting boards washed down and every single bit of cutlery cleaned to within an inch of its life. I put the tree up one morning at 5am. It was fully decorated and lit by 6am. I whizzed around supermarkets, wrote endless lists and had everything planned with military precision. Only problem was, once the steroids had left my system, I was a rag doll, limp and lifeless, with a fixed grin on my face.

This year, I have fulfilled my steroid quota, so no bonus energy for me. With that in mind, and with the spectre of a relapse still looming (is it or isn’t it, darn it??), I need to get Christmas sorted, just in case. So yesterday, I finished my present shopping, chose wrapping paper and tasteful ribbon and even rounded the trip off with a quick visit to Starbucks, The Teenager in tow. I had bribed him with a chocolate shortbread and one of those strawberry drinks with squirty cream on top.

This Christmas, the theme in my house is ‘Scandinavian Minimalism’, cleverly hiding the fact I have no energy to loop endless decorations onto a huge tree. I bought two small trees and decorated them simply, with lots of white lights and nothing else. I found a sculpture of a reindeer made from driftwood and will be wearing a Sarah Lund jumper for most of December. I will disguise my tiredness with Nordic gloominess and a contemplative demeanor. Meatballs and cloudberry juice will be served, along with almond biscuits and salted liquorice.

One thought keeps recurring though. Can I save up my steroid quota next year and use them at Christmas? Mandatory steroids for all those with MS! A new campaign? Right, where’s the Akavit? God Jul!

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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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In A&E – But Not For Me

Strange to be on the other side of the sick bed. My friend was visiting when he started having terrible stabbing and tingling pains over half his face, along with a pressure headache and a painful eye. Hmm, sounding slightly neurological, no?

After a bit of kerfuffle (‘I’m not sick, me man, we are strong’), I managed to drag/push him through the doors of our local A&E, marched him up to the desk and got him booked in. We got seen pretty quickly, a huge range of tests were carried out, he was prodded and poked and we speedily googled everything they told us. I had great fun pulling the ECG tabs from his chest and when the lunch trolley came round, we shared some corned beef and pickle sandwiches, chatted away and tried to stay calm.

Hospitals are funny places. All human life is here. In the opposite cubicles, a man was lying all on his own, the man next to him was having his arm put back into its socket and there was a tiny lady with whispy hair wandering around talking to everyone about her walking stick and a suit she should have been wearing (no, me neither).

I clearly remember being in the same assessment unit, just over a year ago. I was frightened and in a state of shock. I had booked myself in because I woke up and couldn’t speak properly – mixing up words, unable to find the right word, generally talking more rubbish than usual. All this kind of made me thankful that the whole diagnostic process was now behind me. After a year of tests, knock-backs, uncertainty and fear, yes, I have MS. But at least I know what I am dealing with.

Within a couple of hours, the doctor decided my friend wasn’t having a stroke or suffering from anything seriously neurological, it was an episode of trigeminal neuralgia. Painful but treatable. We collected his prescription and left. It was good to feel useful in an emergency and for it not always to be about me. He is now resting at home. I hope. Knowing him, he’ll be back at work. Oi, if you’re reading this, get back on that sofa and look after yourself – you never know when I might need your help again….

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All of a twitter

Ooh, get me! After resisting as long as possible, I took the plunge and signed up to Twitter. Blimey, it’s brilliant! What was I waiting for??

I was gently nudged to join by the lovely people on the mumsnet bloggers forum (@LynnCSchreiber, I bow down in gratitude). Suddenly, the whole world has opened up. I am connected to an incredible network. Just when I’m feeling unloved, unemployable and generally everything  ‘un’, I discover there’s a bunch of supportive bods out there.

Watching the drama of the American election unfold was made all the more wicked reading comments by India Knight and Caitlin Moran – almost as good as having them squashed on my sofa next to me, cackling away with a good dose of alcohol and Kettle crisps.

My tweets so far have been pretty uninspiring but I am sure I will learn from the masters. Already I am chatting away to like-minded people. A fellow MSer even re-tweeted one of my blog posts about being sacked for having MS and I’ve had firm support in return. I am not alone.

So, I am a convert, and you will have to excuse the shorter post today – still trying to work out what hashtags on Twitter mean. Should I #hashtag everything? How can I cultivate a clever, laissez-faire tone with my tweets? Any suggestions gratefully received…

Join me on Twitter:  @MS_Stumbling

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