Difficult Decisions and Brain Fog


It’s a decision that I face every day, maybe even twice a day. Or, at least, I should be facing it but because of the brain fog I often can’t remember if I have remembered to or not. (Life’s got very like that).

You rip open the packet, out it comes and off you go to use it.  Just like that.  In everyday, ‘normal’ life.  You don’t think anything more of it.

It was Husband who needed one first. He grabbed the first one out of the pack, he clearly wasn’t worried about what colour it was, and started using it.

Of course, when I needed one, I ended up with the other colour.

And this where my baffled brain (cell, singular, most likely) gets bamboozled every day, or whenever it is that I remember to brush my teeth (because, sadly, I don’t remember when I do), because my Husband has the pink toothbrush. I have the blue. He doesn’t have a problem with it. I don’t have a problem with it. I mean, after all, this is just a toothbrush that we’re talking about, something that we spend a mere six minutes average with daily, and I’m fully aware that the pink/blue thing is an entirely modern concept (perhaps ironically). However, however … Mongrel Beast is confused.

(Mongrel Beast likes helpful prompts and reminders about daily living, appreciates stereotypes to simplify proceedings).

It doesn’t help either that Husband is deeply mistrustful of my ability to use the appropriate toothbrush. If he catches my hand quavering over the tooth glass then I’m in for an interrogation. It doesn’t reassure him that I can never remember when I last brushed my teeth much less vouch for which apparatus I may have used at the time. And then, naturally, under the heightened pressure and emotion, Mongrel Beast will usually fail to supply the answer to which toothbrush is indeed the correct one. (Although, Mongrel Beast does at least grasp that guessing is not likely to end successfully so just haws like an asthmatic fish).

(Even our dearest are apt to forget, at times, that which is the monsters such as Mongrel Beast that eat away at our cognition and that which is our true Selves).

Nor does it help that the toothbrushes are only differentiated by a slight band of their respective colours. To the addled brain cell, they are both white toothbrushes. You have to look closely. And then, of course, remember. (I’m not doing well with the remembering thing at the moment, did you know?)

I have taken to placing my toothbrush upside down in order to make (or, at least, in hope of, making) it clearer to myself. I don’t think it dries as well though.

And, then, of course, sometimes I forget to…

(Life’s got very like that).


Memory Loss


Is there a word for forgetting what a word is?

You know, just a single word

A term, I think they call it

I can’t even remember the word for that

So how am I supposed to remember the word for forgetting words?


I think there must be a word for it

There always is

I remember a world of fancy words


A once upon a time world

That never was


I’m nostalgic but have little idea of how I arrived here

I can’t remember what I’m forgetting


My Goldfish Year


A Little Green and Blue Handknit Fish on a Hand

I have learnt to live with my limitations on a day-to-day basis; I mean, I just don’t have the energy to fight it anyway!  Most days, I don’t expect myself to do anything in particular and certainly not by any particular time or in any particular order.  I let my day unfold as my body allows.  It is frustrating.  And it is, at times, so very boring.  Once upon a time, I had a hyperactive mind – dashing from one thought to another idea to ooh, let’s do this!  – and I thought doing nothing involved doing at least two things.  Now I am a goldfish in a very limited, very empty glass bowl.  I’m not sure if I’m cut out to be a goldfish.  I know about welfare standards; even goldfish need enrichment.  Can I have a plant?  Or a tacky castle?  Just anything to look at, at least!

The biggest challenge is being upright.  I can’t really explain how easy it is to take for granted the ability to sit up.  It’s something we do at an incredibly early age and then just go on doing naturally ever after.  I used to see pictures of people in my story books, lying on their bellies reading in front of a fireplace (it was always a fireplace) and wonder how on earth they could do it.  I can’t breathe.  I certainly can’t read.  I am sitter.  Although, invariably, cross-legged (even in chairs) to help maintain my balance and to ease the pain.  And that was probably Mongrel Beast’s fault too but it’s been so long my normal that I don’t really blame it anymore, it is just how I sit.  This last year, however, I have learnt to do many things lying down.  I can use a laptop, with a mouse so my little temperature fickle paws can stay under the covers and so that I don’t need to overstretch my grumpy muscles and at times, even with an onscreen keyboard.  I have had to eat and drink lying down.  Sometimes I haven’t been able to do both – sit up and eat.  Multitasking is not Mongrel Beast’s strong point and you’d be surprised what does count as multitasking for it.  I learnt to knit.  Lying down.  How ridiculous is that?  But I need my knitting and it’s well worth the aches that it sometimes gives me so knitting lying down it is.  (I get dizzy working on DPNs and I can’t knit anything too big, not just because of the weight and drag on my hands but because it’s very difficult to manoeuvre if you’re lying down, and sometimes I can’t follow the most basic of instructions and sometimes I can’t remember what the abbreviations are and I have to wear a little sock on my index finger because nearly all the yarn irritate my skin one way or another… but I keep knitting).  Even if I manage to sit up to do something, I list.  Like a shipwreck at the bottom of a goldfish bowl.  And there’s always a price to pay.

There’s always a price to pay.  But sometimes I don’t care.  Sometimes I need to be with people, sometimes I need to go out and do something.  And that’s just the things that I want to do.  There are often things that have to be done (although I have minimised my appointments to virtually non-existent).  I can’t keep swimming in circles looking out at the world.  That’s why I have the laptop so that the world, what used to be my world, can come to me.  But sometimes I want to be in a bigger pond again.  (Goldfish can grow huge, just so you know.  (Not that I’m huge, please)).  I miss being with people, being connected and knowing how they’re feeling.  I miss not being there for people.

So to some extent, I have stopped fighting this.  Because I didn’t have any other choice.  It won.  Very much so.  I can’t pretend to be well whenever I go out into the world like I used to because Mongrel Beast rules everything I do and how I do it.  The effects of this relapse are very evident, very transparent and I cannot hide them behind a veneer of pride or a sense of duty.  I have elderly people hold doors open for me and ask if I’m alright, if I can manage and if I need a hand getting up.  I would feel a lot more mortified if only I had the energy.  My friends carry my belongings and wait for me to catch up.  (It feels like I’m always playing catch up now).  There is shame in losing a war.  Especially when everyone else has to know.  But I didn’t get a choice.  I’m still not getting a choice.  So I plan to keep on swimming because that’s what goldfish do.

I may not plan my days or my weeks but I still catch myself – it’s a little bitter sometimes – assuming that the future will be different.  You can’t accuse the Chronically Ill of being lazy because my heart is not lazy, it longs for and can only imagine a future where I am doing all the things that I want to.  I’ll be better by then.  Of course, I can do that then.  In my heart, I am not Chronically Ill.  I do not have these limitations because these limitations are not me.  Come the summer, come the autumn, next year… Then the other night I dreamt of something future and I had my Legs.  Both of them.  They were there in my future.

It broke my heart.

And I tell myself, well, it’s only been six months since I collapsed.  But those six months have got longer as the year goes by.  And it’s been a very surreal experience.  I might not personally be an optimist but I did truly expect this year to be different, even as it was happening.  I didn’t have goals or anything fixed but I couldn’t comprehend a future, however short term, that would look like this.  I still can’t.

Instead, I appreciate not needing at least eighteen hours sleep a day, I appreciate it not taking twenty minutes to walk to the bathroom across the hall, I appreciate it when I can sit up, I appreciate it when I can string a sentence together.  I appreciate it but it still isn’t enough.  I want my life back, such as it was.  I want me back.  I miss being me.

And now I need to rest.

A Neurological Survey


If you have M.E and are UK-based then follow the links to the Neurological Alliance Survey.  (Isn’t it heartening to see M.E included?)  Of course, the survey is for people with all sorts of neurological conditions so if you have something else in your life than M.E, pop along too.

Neurological Alliance Survey | Dead Men Don’t Snore.

Pain is…


A Stormy Word Cloud Describing Pain - Created by IdEye on Tagxedo

What would you add?

Mongrel Beast


I live with Mongrel Beast.  It’s not a choice I had.  (And perhaps that’s why I resent its presence so much).  To think of Mongrel Beast as a dog isn’t really fair to any canid and doesn’t really do justice to what it’s really like living, trying to live, with such a creature.  But perhaps that is the easiest to comparison to help us, both you and me, to get a handle on what this Mongrel Beast of mine is really like.

So, if Mongrel Beast were a dog, it would be one of those smallish curs that you see in some urban places wandering aimlessly about, purposeless and friendless.  It has never been wanted and it has never been loved.  It is welcome nowhere.  Survival is more a matter of chance than  anything else yet it still holds tenaciously to life, even bereft of sight or hearing, ear(s) or limb(s).  It is of dubious parentage and even more dubious manners.

I say ‘small’ but if Mongrel Beast were a dog, it’d actually be quite large, you know, one of those all-consuming masses of hot, heaving, smelly, hairy dogdom that even the most determined dog lover would feel the need to apologise for any time anyone came to the house.  The kind that doesn’t moult but sort of oozes clouds of fluffy hair; the kind that drools lazily but consistently; the kind that feels the need to pump stale, foetid dog breath in your face; the kind that farts, loud and repugnant, as an icebreaker and room-clearer; the kind that drapes itself casually but possessively across any sofa or bed regardless of its own size or filth.

If Mongrel Beast were a dog, it certainly wouldn’t be the discreet kind of dog that you could maybe sneak into your local pub or even better heeled locales.  It wouldn’t be the kind of dog, regardless of the (im)purity of its bloodline, that could tempt or even charm with looks or eyes even the hardest hearted of dog haters.  Mongrel Beast would be the shaggy, ill kempt monstrosity that all the other dogs wouldn’t be seen dead greeting in the park.  Boycotted by all kinds, given a wide and suspicious berth, Mongrel Beast doesn’t really belong anywhere and it certainly isn’t welcome.

If Mongrel Beast were a dog, it wouldn’t be a stray with all the other strays in an area or region where such dogs are to be found.  Oh no, Mongrel Beast haunts respectable neighbourhoods, a lone spectre of decrepit bad taste, lowering the tone, frightening the children, leaving whispered fear, shock and horror in his wake.  The kind that no kind or soft-hearted stranger would ever consider giving a chance.  It would lurk, wild-eyed, just within sight of the swings in the park; apart from community and society but far too close for comfort.

Mongrel Beast is not the kind of thing that you can take anywhere; it doesn’t do polite company or in fact, company of any kind.  It runs to its mysterious wills and whims, scorning conventions and expectations, acknowledging no master.  It follows you along, like a slinking cur, possessive and obsessive, and impossible to shake off.

Society has tried to name and thus, hopefully, tame a few of its cousins.  (Although whether by naming the beast it is actually tamed or whether the name just allows a formal introduction, a handle by which we can grasp and try to explain the presence in our lives to the rest of society is a different debate).  There was the Hound of the Baskervilles, of course, a creature whose actual substance still remains contested yet looms large and fearsome in the popular consciousness.  Then there is the more slowly popularised Black Dog whose presence and impact cannot be contested but is still a highly unwelcome visitor.

The impact it has had on me is similar (perhaps scarily so) to that portrayed by the pictures and words of Matthew Johnstone as he charts his relationships with his own beast, Black Dog.  After all, it’s not the nature of the beast that is hardest to deal with, to live with, to explain but the impact it has on our lives, our relationships and our outlook.  Perhaps by talking about these creatures openly and honestly we can start to address the issues in a better, more reliable manner.  Perhaps that’s why they need names.

I live with Mongrel Beast.

The Score


Mongrel Beast   1 – 0   Me