Pseudo-relapses. WTF?

Anxiety, Dissolving into liquid sky, It's not fair, Lemtrada, Life is hard, Medication, MS, Multiple Sclerosis, Pseudorelapse, relapse, Worry

Exactly. WTF is a so-called pseudo-relapse anyway, and WHY?

A pseudo-relapse is a fun bit of MS bantz.

TOTAL LEGEND! What happens is, you have an infection – maybe your classic UTI or, if you’re me, which I am, you have that and, plus, of course, your thyroid gland spends a good few months wildly veering between out of normal range high and out of normal range low before entering insanely hyperbolic death throes after being zapped with radioactivity, and your – in this case my – body reacts by retreating into its comfort zone of distressing malfunction.

It’s a relapse brought on by external factors rather than by your MS kicking off.

My incapacity manifests thusly: right side of my body ceases to function. Walking involves, often, being unable to lift my right leg so therefore dragging it along the floor in a sort of imitation skim-walk (see George Saunders, Lincoln in the Bardo). Right arm hangs uselessly by my side reminiscent of a terrifying zombie, so I am forced to teach D to do ponytails as hair in your face can be well vexing. Instruction involves me frustratedly saying things such as, “what are you actually trying to achieve?”, “in what universe do you expect that to function as a ponytail?”, “I have literally no idea what you are attempting in this endeavour”, and such. Which is pretty much my teaching style as it is.  In addition, fun-times include spending ten minutes on waking trying to solve the puzzle of how to sit up – ‘Ema Weston awoke one morning to find herself transformed into a giant slug.’ Plus my voice is all ridiculous and salivary and slurry. BANTER.

Pseudo-relapses are scary because you don’t immediately know that they’re pseudo.  Inevitably your first thoughts are pure panic. Shitshitshitthetreatmenthasn’t workedIt’shappeningagainMSisgoingtotake meoverI’llbeirretrievablylostthistime nohopenohopenohopenohopenohope…

And then.

You start to believe the medical professionals and you get some steroids (I FUCKING LOVE STEROIDS – although they do give you insomnia which is why I’m writing this at 2:52) and you start to recover pretty quickly I HOPE AND TRUST.

And then you begin to think at least I’m not under rubble in Mexico City, at least I haven’t watched my house blow away in Anguilla, or have no fresh water in Puerto Rico, at least bombs aren’t falling on me in   Syria, at least British-made artillery isn’t maiming my children in Yemen, at least land-mines aren’t killing me as I try to escape to safety from a country that denies my nationhood like the Rohingya in Myanmar, at least I’m not dying in the slums of Mumbai after watching all my possessions wash down the street before disappearing, and Trump and North Korea and Brexit and austerity and AfD in Germany and climate change and refugees still, still,  trying to get here and the officially sanctioned hostile environment that awaits them if they ever do…

Oh dear (see Adam Curtis: Oh Dearism).

And on that, back to bed.


***Dedicated to K, who I miss terribly ***


Additional notes

  • My most recent MRI, done in July of this year, showed No Evidence of Disease Activity (NEDA) which I was obviously over the moon about, which is why this has come as such a horrible surprise. I hope I’m still in the NEDA camp but this may be down to lack of understanding on my part.
  • I sound glib, but it’s the overwhelming hopelessness I feel.
  • I’m an ardent Remainiac.
  • Yes, it is you I mean, K. StokeC is brilliant, but I’d like you to come back please. As well. I’m needy and entitled!
  • Meet me at the Lake Pub.
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I HATE BEING CHRONICALLY ILL

Anxiety, Career, Cats, Damn like or damn comment on my damn blog! Thank you., Employment, Fatigue, Happiness, I'd like to sit down please, Insanity, It's not fair, Life is hard, MS, Multiple Sclerosis, Sexy foxes, Why aren't I Patti Smith?

September is like January Pt 2 for teachers. And probably some non-teachers as well. Like the first official month of the calendar year, I’m having a ‘dry’ September after a reasonably alcoholic summer. And I’ve made both a mind map and a to-do list. Which proper disrupted my sleep last night with list induced panic. Horror show. Disclosure: one item on aforementioned list is WRITE BLOG POST. So don’t think I’m doing this out of kindness, alright?

The first list item is: PAY MONEY INTO BANK. I’ve put a line through that one. And it’s only 10:17. Go me *rolls eyes*. 

And this is why I HATE BEING CHRONICALLY ILL. 

My walking is all difficult today, so instead of making my way through town looking all ‘together’ like a woman in a sanitary product advert, I weaved all about the pavement, in serious danger of veering into actual traffic, probably presenting as a drunk – which would be fine if I was, in reality, drunk – but I’m at the start of a dry month. And I’ve a new haircut that I alternate between HATING and REALLY QUITE LIKING but this morning it added to my woes by making me look like a DERANGED MANIAC/SMALL BOY/HARASSED HOUSEWIFE IN A KITCHEN SINK DRAMA DIRECTED BY KEN LOACH. 

And. 

Despite my friends saying stuff like, “well, you never really liked being a teacher…” THAT’S NOT THE POINT. Yes, when I could work, I complained incessantly, always boring on about wanting to go part time, BUT NOW, I’m totally envious of my teacher husband/friends starting the 16/17 school year today. IT’S NOT FAIR. Work means colleagues and intellectual stimulation and money. AND NOT FEELING LIKE A TOTAL LOSER BECAUSE YOU DON’T WALK RIGHT AND YOU GET SO TIRED AND NEED A REST AND YOUR WRITING IS TERRIBLE BECAUSE YOU ARE BROKEN. 

So. I feel great. Have a nice day. That’s one more item crossed off. 

END OF POST. 

Things I believe to be true – some of which manifestly are.

Bodies of water, Death, Dissolving into liquid sky

There is no final, universal meaning. The answer isn’t 42. There (probably) isn’t a God, and if there is – she stopped listening ages ago. We are but insignificant specks living out our brief lives on a spinning rock hurtling through cold infinite space. Think of ants crawling across a blank sheet of paper. I hope I’m wrong on this. Or right. I can’t decide which is worse.

Our beautiful planet is going to become an increasingly hostile place on which to exist over the coming decades. It is too late for the effects of devastating climate change to be checked. We’ve blown it. Oh well. C’est la vie. That’s all I have to say.

O Europe. Where once, in recent history, the fall of borders was a cause for celebration, now they’re reappearing. Union crumbles, predictably, unfortunately, into division. Revolutions circle entirely, ending up where they started. O Europe. I’m scared of where you’re – we’re – heading. History has a habit of repeating, but now we’ve got weapons that can take life, and lots of it, with even greater efficacy. Out, out, brief candles.

Our response to the refugee crisis, so far, has been…lamentable? I honestly don’t think we have yet developed language that can adequately convey the complete horror of what’s happening. The overwhelming feeling of helplessness that is engendered. I read the papers, watch the news and cry. But, so what? Who are my tears helping? O Europe. O, O, O.

And before we can deal with our planet, with our continent, what about our country? Are we rushing back into some kind of 11th Century feudal system, via the Victorian workhouse, and whatever came between the two, My history isn’t great, you may have noticed.

Aaaaooooooorrrrryyygghhhhhh (Anguished scream).

I am so grateful that, by accident of birth, pure serendipity, I was born where I was, and ended up ‘middle-class’ with a profession that awards me adequate pay. I’m not complacent through. Or at least I try not to be. Complacency suggests contentment with the status quo  “no matter how fucked up the status quo is.” And it’s really fucked up.

It’s very hard to imagine yourself as an old person. I’m talking eighty, or whatever. When you’re a kid, you probably imagine being eighteen, maybe twenty-one. I mean, truly visualise yourself at that age. But not far beyond that.  I think I’ll die before I’m seventy. Actually, before that. I’ve always been convinced that’s what will happen. It’s fine, I’m not distraught or anything. I just can’t picture me getting old. Like, properly old. Or, is it like that for everybody? Maybe the MS thing is part of it. But, I’m convinced it’s something I’ve always felt. Oh, I dunno. Who cares?

I guess I should mention MS, as this blog does trade under that umbrella. I’m feeling alright at the moment. The Lemtrada themed hospital stay continues to get closer; I’ve got new pyjamas. I’m actually quite looking forward to having the excuse to do nothing but read for five days. Except, in all likelihood, I’ll feel all ill and sick and therefore be unable to concentrate on actual printed words. Alas.

Acceptance. 

MS, Multiple Sclerosis

Acceptance. What do we mean by this? No, no. Hands down. I’m going to give you thirty seconds to write down your own definition. 

(You can take the girl out of teaching… )

Where were we? 

Once upon an unspecified time, in an unspecified place, an unspecified person said to me (#humblebrag siren!), “I think you’re so brave accepting it, I don’t think I could – I’d have to carry on, you know me...”.

No, I didn’t punch her/him. I did, perhaps a little more forcefully than is usual for me, say, “[Name], it’s not really a question of me ‘deciding’ to ‘accept’ it – I’ve been doing all I can to ignore it up till now”. Or something. Then when I got home, after recounting the exchange to D (as part of the usual lengthy monologue he enjoys, and I dare say looks forward to, each day on arrival home after work), I got angry. Then a bit angrier. And now, pretty furious.

Me, an unspecifed day.


Because accepting MS isn’t a choice you make.

Do you ‘accept’ it the first time you regain acceptable balance after a near plummet into a stranger’s path, after extravagantly tripping over an entirely obstacle free section of pavement, and they respond by throwing quite a questionable look in your direction whilst you attempt to style it out? Or do you ignore it until sections of you start to go entirely numb and you can’t feel your partner’s hand on your leg, or anywhere, anymore? What about when one, or both, of your legs stop following the instructions your brain is trying to send to them and you have to use a stick, or a walking-frame, or a wheelchair?

Would she/he still not accept it? Are they an idiot?

Not accepting something that makes every effort, screams and shouts, to get your attention is like not accepting that you’ve turned up to work naked, and that’s why the boss wants a word. “No, I don’t accept that. I do not accept that I’m naked.” Or not accepting that the world’s round. That night follows day. That 2+2=4.

Because – cue rousing music – what I’m here to tell you is – Night’s Watch, are you with me? ACCEPTING IS NOT CAPITULATING!

Always, Jon Snow.

That’s what I should’ve said.