Tag Archives: cog fog

May 05 2018
6 Comments
Emotions

Rage Against The Lesion

Lesions, eh?

Little white sinister blobs on our MRI’s, causing untold relapses and despair.

I had a spectacular first ‘proper’ relapse eight years ago and nothing – absolutely nothing – could prepare me for it.

A day trip; a long-planned stroll around shops, and a coffee with a dollop of cream on top with a generous slice of cake in Ye Olde Tea Shoppe afterwards.

The Teenager was away on a rare break, and even though I still had a packet of wet wipes and an emergency box of Lego-themed plasters in my handbag, I was … an adult … for the day.

Or so I thought.

It started on the way there. I couldn’t stop yawning and slumped in the passenger seat, answering my friend with a Danish accent.

We parked up, and I meandered the streets, weaving this way and that, feeling completely spaced out. I floated around with numb, unworking feet and arms, disconnected and, if I’m honest, beyond scared. I fell against walls and tripped over my feet.

I finally found the Ye Olde place we’d agreed to meet at and I sat down, terrified. Something was very, very wrong. The language difficulties increased, as did the sensation of not being of this planet (I know, not that unusual for me, but bear with).

Two days later, I was admitted to hospital with an (eventually diagnosed) unusual lesion on the speech part of my brain. I could have gone in earlier and stayed in for days, but The Teenager was due back within hours and that took complete  precedence over anything and everything. Within a year I had highly-active MS and treatment to match.

Fair play, The Teenager, even after all these years, still does a wicked Danish impression of me. I cannot begin to imagine the impression it left on him at such as young age.

So, lesions. Every day I wake up, I know exactly which ones will come forward and play up. Some are here to stay, the frayed cables permanently snapped – the foot drop, the balance. Some flare under fatigue – the language, the garbled speech, the cog fog. Sometimes they all get together and push me on to the sofa where I spend my days watching clouds drift past my window.

The one I hate the most is the sudden darkness and depression. It descends rapidly – I can be happy one moment and then in the pit of utter despair; I would rather speak with a Danish accent the rest of my life than go through it over and over and over again, a vindictive Groundhog Day I cannot escape from.

In short, it’s awful. It happened just two days ago. That sudden darkness. I’ve tried to learn to just relax in to it – I tell myself it will pass and I will be ok, but it’s so hard.

I know it’s MS and I know it’s a lesion. It’s just a blob asking for attention.

So I try to rage against the lesion. I know what’s happening. But it can take all my diminishing strength to see it pass back in to real life again.

But the bonus? I can still do a wicked Scandi-cop impression …

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Mar 21 2018
18 Comments
Emotions

I Bet I Don’t …

A fellow Master’s student threw a massive spanner in the works of my so-called Life last week.

She emailed me a link to Student Finance; apparently from September, they will be funding PhD’s through loans, in the same way as undergraduates.

I’d long since put that dream to bed, packing it away with all the other dreams that MS had trampled all over – running a half-marathon, staying up past midnight, opening a packet of crisps, having a proper career,or even a partner.

The Master’s was a challenge I set myself and it was horrific at times. The self-doubt along with the regular cog fog, fatigue and inability to string a coherent thought together morphed into a mountain of despair.

However, the Student Disability Team at my University were magnificent and I wouldn’t have graduated without their ongoing support. The pride I felt on graduation day swept away all the struggles, even if my cap kept slipping and I panicked about foot drop.

And that’s the thing. It was a challenge; difficult, insurmountable at times.

And now, there is no real challenge in my life. I have a great job but it will never be a career – I’ve traded that dream for a job that is flexible, understanding and totally built around MS.

As for a partner. Lol. I’m nowhere near ready for that. Having been single since MS first began (almost seven years ago), I’m resigned to meals-for-one and over-indulging the cat.

Don’t get me wrong, I’ve long since moved on from my epic pity-party-for-one. I count my blessings, not least the incredible care and treatment I have had for the MS.

Yet, there is something … missing, something I could never, ever contemplate but is within tantalising reach. I’m not an academic and it was noted during my Master’s that I’m not an academic writer, so that’s a challenge in itself. But I have a germ of an idea that just won’t go away.

Part of me wants to give it a shot. Part of me wants to keep on binge-watching Netflix, cutting open crisp packets with my safety scissors and peering through the window, watching the world go by without me. It’s safe and it’s comfortable.

So, I’m putting this post out there, to you guys, not to convince me either way, but let’s chew this over. Six years part-time while still working is a huge commitment. Am I running away from dating? Or am I embracing a worthwhile challenge that will stretch me to the absolute limit?

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Oct 09 2015
2 Comments
Symptoms and Treatment

The Perks Of Being A Goldfish

goldfishThere’s nothing much happening in our little cottage since I’ve been convalescing from my third course of Alemtuzumab, so I’ve mostly been Thinking, which is always a risky undertaking.

Uppermost in my mind is, well, my Mind. In other words, my Goldfish Brain.

This is best explained by my risible attempt at New & Experimental writing at Uni:

I had to ‘write a sketch  in which the gender of the narrator and/or characters is obscured or manipulated in some way’.

Really.

So I did what any pretentious peep with literary leanings would do and wrote a sketch using only titles from the top 50 bestseller list from a popular bookstore – sample line: ”It was always Personal, always about Us. Where My Heart Used to Beat, there is only Lamentation”. Counter-culture or what? And I even called it ‘Water & Stone’. Yup, I am that tragic.

Anyway, I polished it, posted it on our forum and promptly forgot about it. Which probably wasn’t a bad thing.

This got me Thinking. MS has taken a giant eraser and smudged out a whole part of my brain. At first this was pretty frightening, as you can imagine. Words failed me, jokes died, anecdotes withered in the middle and post-it notes bloomed all over the house.

Looking on the bright side however, I decided to write a list of all that was positive about this, and here it is, taken from my scribbles:

  • Supermarket home delivery is a joy, every single week. I completely forget what I’ve ordered, so when I unpack the bags I stare in wonder at the gluten-free pasta and think, ‘wow, I needed this! How fabulous’. Digging through the bags is exciting and just like Christmas. Especially when they pop in a free sample – ‘yay, a small pot of spinach-flavoured yoghurt, just what I wanted’.
  • I am the Best Ever Friend. I’m the friend who can not only keep secrets, but also promptly forgets them. Result.
  • Every day is a whole new experience. I wake up refreshed, having forgotten the traumas of yesterday. If I’m reminded, I’ll deal with it. If not, I enjoy my coffee.
  • I can’t argue any more. This may sound like a bad thing, but believe me, it’s an unexpected bonus. People will attempt to bring me into long-standing grievances/arguments/slights and I’m like, ‘oh, really? And when did that happen?’ They will then start talking really slowly in a very loud voice to me and try to explain. I forget.
  • I’m never bored; I gaze at my pile of books by my bed (just the books I want to read, how amazing), I admire my friend’s notes from Uni (was I actually at that lecture? Wonderful, let’s read the notes and enjoy it all over again). Hey, someone’s put more loo-roll in the bathroom and it definitely wasn’t The Teenager. How thoughtful.
  • Last but not least, I forget how much chocolate I have eaten.

Mind you, I’ll have to rein in this Goldfish Brain as I start back at work in a couple of days.

Apparently I’ve met with The Boss for coffee several times over the last week for a catch up and debriefing. If you remember what we talked about, could you send me some notes?

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Nov 18 2014
8 Comments
Symptoms and Treatment

Please Excuse My Brain, It Doesn’t Know What It’s Doing

memoryI was formally introduced to my brain after my very first MRI.

There it was, in all it’s lesioned glory, glowing brightly on the computer screen. I was entranced and tried to take in what the neurologist was telling me as he counted up the little blobs of white amidst the grey.

I used to like my brain and we got on quite well; it saw me through lots of adventures, exams and crises. And Trivial Pursuits. It could always be relied upon to make snap(ish)  decisions or mull over a myriad of options for any given situation.

Lamentably, it has decided to strike out on its own, making a bid for devolution and taking a lot of important bits with it. Now my short-term memory is atrocious. I repeat myself. I also talk about the old days, but that’s probably an age thing. I repeat myself.

I frequently apologise on behalf of my brain and it can become quite awkward. Say I’m standing in front of a huge cafe menu, chalk-boarded behind the increasingly-impatient barista. I am blank. I literally cannot think what to order. Likewise menus in restaurants, shampoos and conditioners in Boots, colours on paint charts and which wrapping paper to buy for Christmas (someone told me it was soon).

I forget the most basic facts so chatting with me can be a journey into charades. I can’t remember names, conversations or dates. I point to stuff, use my hands to describe things and say ‘aggggghhhhh, you know, that, that, um, thing with the spouty bit?’ ‘Oh, yeah, thanks, kettle.’

However, let’s look at the upsides. For one, I no longer brood on things. Drawn-out arguments are a thing of the past. I could have one on the Monday and bounce into work like Tigger on the Tuesday, all forgotten, unless I’ve blogged about it. Then I brood, meh.

But having a short-term memory means I re-experience wondrous things again and again. It’s almost as if every day is new. I get up in the morning and think, ‘wow, what a lovely day! Oh, great, I can have coffee! Wow! And the cat, isn’t she just gorgeous?’ Until, thwack, I veer into the bannister and it all comes rushing back.

That aside, I will continue to count my blessings. I equate it with a computer and how refreshing it can be to delete and send to the trash bin all that junk that’s been hanging around, and that’s got to be a good thing?

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Sep 02 2014
4 Comments
Symptoms and Treatment

Dim? Some.

Memory, what memoryI was with the boss one morning last week; we were driving to a warehouse to buy something or other for our latest project.

He pointed towards the humungous Tesco Extra on our left, saying, ‘it’s been refurbished, there’s a Costa there now too.’

‘Oh, um, great! Must check it out, but you know my heart lies with Ocado.’

We got the something or other from the warehouse, loaded the van up and drove away.

‘Hey, boss! Did’ya know that Tesco’s has had some kind of makeover. Someone told me. And Costa’s has opened. That one, over there.’

Silence.

Then, ‘are you winding me up?’

‘Nope, boss. Just know you love your Costa coffee with the caramel swirly thing.’

‘Yeeeeeees (very, very, slowly), but ten minutes ago I told you about it. You’re freaking me out.’

‘Oh.’

‘Your memory, honestly’ – then all I heard was the word ‘dim’.

‘Oi! I’m not dim. I won a medal once. For badminton.’

‘Noooooooooooo (very, very, slowly), I said you’re like a dimmer switch. Sometimes very bright but other times, you know, dimmer. More dim. No, not dim. Just not as bright. But not dim as such. You know what I mean.’

*sulks all the way to the meeting with the architect*

But, he had a point. My memory over the last six weeks has been atrocious. Embarrassingly so. I asked my mum, ‘I know I’m ancient now, but was your memory this bad when you were 41?’

Mums are a polite bunch, aren’t they? ‘Well, dear, we’re all different. We all have strengths and weaknesses. We all find our unique place in the world. But yes, your memory is dire.’

The Teenager plays on this – ‘But you said, you said I could have a Dominos. Is your memory playing up again? Don’t forget you said we could get a dog. AND, remember that £20 I owe you? I’m so happy I paid you back’ (he didn’t. I know this for a fact). Nice try.

Anyway, on the one hand, it’s a great cop-out (pesky MS cog fog), but on the other, I am liable to be hoodwinked on a regular basis, plus I just can’t remember anything important. I have to write everything down, to the point that when I walk through my house, I’m accosted by a forest of post-it notes. Which I can’t remember writing. What does ‘T-hhhhhhh!! CJ R’ even mean?

And as for Costa Coffee. I haven’t been yet. Did I tell you they opened one in my local Tesco Extra?

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