Apr 14 2013
14 Comments
Symptoms and Treatment

‘D’ Is For Cog Fog…

D Is For Cog FogI am a dunce. No two ways about it, MS has seriously fogged up my brain.

I first noticed it before I was diagnosed – simple recipes became infuriating Mensa-like tests, I got lost driving to the shops and reading a book was an exercise in tedious endurance.

I’m in my final year of my part-time degree and the last five years have been pretty good.

I’m an unabashed girly swot and enjoy cracking open a new packet of Sharpies, drawing intricate mind maps, carefully crafting my essays, ferreting out incisive references. Then my brain went on holiday with a one-way ticket.

After an agonising couple of weeks last month, I finally submitted my first essay of my final year. The mind maps never moved beyond a bunch of circles with nothing in them and my Sharpies lay dormant. I got my result yesterday. It was 65%. Sigh. Such a sad, sad little number.

I normally get higher marks, so this was upsetting but not totally unexpected. I often struggle to add up simple numbers or find the right word, so writing a 2,500 essay is akin to scaling Mount Everest in flip-flops. In the middle of recounting a funny anecdote to friends over coffee, my mind can go completely blank, the punchline withering and dying as my friends look at me with pity.

I read recently that memory loss is the most commonly reported cognitive difficulty in MS. Last year, when I was revising for my exam, I had written up a set of comprehensive study notes. They were a thing of beauty. I read them over and over and over again, but nothing, not one tiny thing, would stick inside my brain. I barely scraped through the three hour exam but luckily my fabulous MS nurse wrote a letter to the university explaining that I was not stupid, it was the MS.

My next essay is due at the end of May and I am hoping for some divine inspiration. In the meantime, I’m furiously highlighting points in my books, jotting down what I hope will be valid arguments and crossing my fingers for luck. And no, the Sharpies haven’t been used yet, but they’re on my desk, raring to go. How do I draw a mind map again?

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Apr 12 2013
8 Comments
The Teenager

Basket Case

never take a teenager shoppingI’m not a fan of supermarket shopping and I should have been suspicious when The Teenager jumped at the chance to accompany me the other day.

I haven’t given up online shopping, but my mum mentioned she had seen some artificial grass in a supermarket nearby and it was selling out fast.

It was one of those cut-price supermarkets – no frills, no helpful staff, prison-style strip lighting and pushy customers shoving their trolleys into any legs that had the audacity to get in their way of grabbing the last bottle of Lambrusco or tin of discounted baked beans.

‘Muuuuuuuuuuuuum, can I have a bag of donuts?’

‘No.’

‘Two donuts?’

‘No.’

One?’ (sad face)

‘Just let me find the blinking grass and we’re out of here. What? Oh, alright then. ONE.’

I found the grass and tried to juggle four rolls of the stuff in my arms when The Teenager came back with a basket, one donut lying forlornly in the middle.

‘Why do you need a basket for your donut?’

‘Er. Um. Pepsi’s cheap, only 25 pence a can and I never have pop and everyone else in school has pop in the house and it’s not fair that everyone else in school gets to have pop and I don’t and I really think it’s so cheap that it would be really nice if for once I could have some pop in the house so I’m just like all my friends and won’t feel so different from everyone else. See?’

‘Oh really?’

‘Yeah. Pleeeeeeaaaaaassssssse? Just say ‘stop’ at the number of cans I can have? Tennineeightsevensixfivefourthree…’

‘THREE. You can have three. One a day for the next three days as a treat. Then it’s checkout.’

We queue up, offload the grass, Pepsi and solitary donut.

‘Muuuuuuuum’.

‘No.’

‘You don’t even know what I was going to say.’

‘Yes. I. Do.’

‘Awwwwww. Can I just get one tiny packet of chewing gum? Everyone else in school gets to have chewing gum and….’

‘STOP. Don’t go any further. I know exactly what you’re going to say. I’m your mum. I’m a mind-reader.’

‘Meanie.’

‘Right, put the donut and the Pepsi back then.’

And so on and so on. And that is yet another good reason for never, ever going supermarket shopping…

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Apr 10 2013
10 Comments
Emotions

Feeling Blue? Think Yellow…

feeling blue - think yellowThe miserable Arctic weather and lack of sunshine is making me feel, well, miserable. Thankfully I recently bought Albert Espinosa’s fabulous book, The Yellow World and life suddenly looks a whole lot brighter.

Espinosa wrote the book after surviving cancer, and many of his inspiring points can apply to anyone, not just people living with a serious illness:

Ask 5 good questions each day – silly ones, practical ones, emotional ones. No matter what the question is, having answers will empower you.

Keep a life record – keeping things that are important to you at the time can help you look back and realise how unimportant they are now. The embodiment of the ‘but will it matter in a years time?’ rule. Also keep things that remind you of good times – the heart-shaped stone you found on a beach, the drawing your nephew made just for you.

Find the positives – life doesn’t go to plan, but your reactions to it can. Even if it’s only small, try to find something positive in everything.

Take 20 minutes out every day – Espinosa learned this from having to stay still during scans. Shutting out life for just 20 minutes can free the mind.

Look at things – so often we rush through life not noticing our surroundings. Try to make a conscious effort to see the details we often miss.

Finally, collect Yellows. You know who they are – the people with that certain energy, that goodness about them that just makes you want to be in their orbit. MS has taught me to turn away from the negative people I used to know, the energy-sappers, the fair-weather friends, the doom-and-gloom merchants. I just don’t have the space or time for them in my life any more. Their ‘void’ has been filled by people I can’t wait to spend time with. If anyone else has read this book, let me know what you think?

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Apr 08 2013
15 Comments
Daily Life

Stumbling In Style…

MS Trust Shoes 2 MS Trust ShoesThese are quite possibly the best, most stylish, most beautiful pair of flats I have ever owned – the lovely and talented Helena at MS Trust customized them for me after I hankered after a gorgeous pair of high heels she created.

They’re currently living on my desk so I can admire them and I’m just waiting for the perfect opportunity to launch them into society.

The shoes led on to a Twitter discussion about what else we could customize – I suggested a blue hard hat for work? Tagline – ‘When your world crumbles around you, there’s always the MS Trust…’

The Builder thinks that’s a brilliant idea, as it could possibly mean I will do more work, rather than eating bacon butties, texting and pointing out that his measurements are wrong.

Anyway, I absolutely adore my new shoes – they are a work of art. I’m tempted to frame them, but that would be a waste. They need to be seen! So if anyone would like to take me out to show them off, just let me know…

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Apr 06 2013
6 Comments
The Teenager

Single Parent, Multiple Sclerosis

Our little family has adjusted fairly well to life with multiple sclerosis, but now and again it throws up some major hurdles.

Even though my ex-husband and I are happily divorced and are bringing up The Teenager as well as we can despite the 140 mile distance between us, there are definitely times when it would be handy to have a partner around, or at least in the same city.

I’m booked in to hospital for my second round of Alemtuzumab treatment during the summer school holidays and it’s coming round far too quickly. The Teenager will be at his dad’s for a week as usual and with the way the dates have worked out this year, I will have just one full day to recover at home after three days in hospital before The Teenager is home again. I am panicking. Slightly.

Last year, the Alemtuzumab left me exhausted, weak and under the weather and I had several weeks sick leave from work but I also had three clear days on my own at home to start to recover.

I’m not so much worried about me, but about how The Teenager will feel seeing me lying on the sofa even more than usual. Is there anything more depressing than an ill parent? I tried to have a chat with him about it the other day and he’s promised me that if I buy him enough pizza, he’ll be fine, so here’s my plan to get through the first week or so:

  • Pizza
  • Accept all offers of help
  • When he’s out with friends, have a sleep, so I’m fully(ish) awake when he’s back
  • Encourage/bribe The Teenager to have friends for sleepovers
  • Stock the fridge with lots of good-quality ready-meals
  • Ignore the dust
  • Keep explaining that the treatment will ultimately make me much better in the long-term
  • Pizza

My friend’s daughter has offered to cat-and-house-sit again, so that’s one less thing to worry about. I’ll also organise a huge grocery delivery just before I go to hospital. I know what to expect this time round, so hopefully I’ll be better prepared than last year.

I was feeling very chuffed with my list and plans, then I checked my diary again. Yup, I’ll be turning 40 less than three weeks after the treatment. Now I really am panicking…

(no small violins were harmed during writing this blog post)

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