Monthly Archives: November 2012

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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Needle Fiddle Faddle

Until my epidural, needles held no fear for me, but trying to stay completely still whilst being racked by labour pains is no laughing matter. I swore off needles for life, there and then. Ha! Now it seems needles feature quite a lot in my life, another side-effect, brought to me courtesy of MS and yesterday I was off to the surgery for another blood test.

Last year, on the basis of a suspect MRI, I was whisked off for a lumbar puncture. People are divided about these. Some have great experiences and sail through them, tutting loudly and wondering what all the fuss is about at us lot who scream their way through them. It wasn’t the doctor’s fault that he’d never done one before. The needle (huge, vile thing) kept hitting bone. No words could possibly begin to describe the pain.

Over an hour later, I loosened the grip on my mum’s hand, tears pouring down my face, in absolute agony. And if I thought that was horrific enough, worse was to come. The skull-crushing  lumbar puncture headache. It lasted a week. It literally (and I don’t use that word lightly), felt like my brain was being squeezed. Probably the most painful experience of my life.

This summer, whilst in hospital having Alemtuzumab treatment for MS, I had a cannula inserted and it was to stay in my hand for a week. A week!! I managed four days until it fell off in the shower, recreating a massacre scene, blood spurting everywhere. As part of the monitoring process, I have to have a full blood count taken every month for five years, plus I’m due my second and hopefully last dose of Alemtuzumab next year.

I’m an old hand at this now –  every time I see a doctor or nurse, I automatically roll up my sleeve.  Is it slightly sad though,  to be disappointed not to get a sticker for being so brave?

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Happiness Starts Here…

I had a lovely response from yesterday’s post – thank you to those who took time to comment. This got me thinking about gratitude. My recent work and health situation has taken a lot of my energy and it is all too easy to forget that for 90% of the time, life is just fine.

Like mindfulness, it is about taking pleasure in all things in the present moment and being grateful. It means not dwelling on perceived hurts, slights, comments. They have happened, they are the past. To drag the past into the future is to set yourself up for failure.

So today, I want to give myself a kick up the backside and jot down everything I have to be grateful for:

  • My family – they are incredible and give me an enormous amount of strength and confidence.
  • My friends – who have been so supportive through this difficult time. They are always there for me.
  • The NHS – especially the MS team. I don’t know where I would be without their help, advice and shoulders to cry on.
  • My health – strange to be grateful for this. I have MS, but it could have been worse. Much worse. I still walk, I still have my sight, I am still independent.

These are only the main points. I also have a lovely house, a comfy sofa, a huge stack of books to enjoy and a firm belief that life will get better. My MS is almost under control with medication, bar a few hiccups. The work situation will be history soon enough. The Teenager is growing up to be a darn fine young man. A fantastic friend made me a Shepherd’s pie and cake at the weekend when I was poorly. Seems to me I’m actually very fortunate.

Sure, we all get dark days. I know I do. Days when the situation seems hopeless. And that’s fine too – we’re all entitled to feel sorry for ourselves now and again. But when the bad days start to outweigh the good ones, that’s when you have to act. The famous phrase is that we don’t regret what we have done in life, but what we didn’t do.

This situation will pass. Life will move on. Will it all matter a year from now? I doubt it.

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Right Here, Right Now

I am stressed. And if you follow this blog, you probably already know that. There’s far too much going on, and my brain is in risk of imploding.

Losing my job has unsettled me far more than I expected. I don’t feel safe or secure. I know I have continuing employment, thanks to my friend, but it’s a stop-gap. I worry about money, about  when/if I will have a full-blown relapse, about the future. This has to stop.

So I have decided to try to live much more in the present. Right here, right now. I don’t know about you, but my mind starts whirring over as soon as my alarm goes off in the morning. Standing in the shower, I go over my fears, what I should have said to someone but didn’t, my worries, everything. By the time I make my first coffee, I’m bogged down with stress. Surely not the best way to start the day.

By trying to yank my mind back to this present moment as much as I can, I am hoping to stay focused, serene and stress-free.  To start with, it is difficult. Our minds like to go wandering about, poking into all the dark places. But then we miss the beauty of the present. We live life only by reviewing the past, which can get pretty tedious.

At the shops yesterday, I tried it out. It’s fabulous! I noticed things I don’t normally see. I appreciated beauty more, rather than constantly thinking, analysing and brooding. I have applied it to my work, too, with great results. I have four weeks left in my old job and I want to give my absolute best, as a matter of principle.

In some ways, MS helps with living day to day. I know, not always in a good way. We worry about every new symptom, every little tingling or numbness or something not working the way it should. But in another way, MS can help us appreciate the good things in life. A day with fewer symptoms than before, or a good catch up with a friend or simply feeling that life isn’t that bad after all. MS really does put life into perspective.

Life is short. Life could be worse.

 

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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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