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 can’t think of a title for this post. 

Anxiety, Dissolving into liquid sky, Employment, Fatigue, I'd like to sit down please, It's not fair, Life is hard, MS, Multiple Sclerosis, Wasting the day

Well. [Aside: As an English teacher, I often put a cross through this word when a kid starts a piece of writing with it, for example: ‘Well, Juliet is eager to hear…’, or ‘Well, it was a sunny afternoon’.] However…

Well. It’s been some time since last I wrote. It’s a cloudy afternoon and I am doing absolutely nowt. Apart from this, obviously. And continuing to exist. I’m not gas, drifting through a vacuum.* Obviously. I’d forgotten how literal you are, Imagined Reader. Let’s try our best to get through this, then you can go back to whatever it is you occupy yourself with these days. 

I find myself to be emotionally fragile. A supply teacher can be dropped according to the whims of the school. Listen: “we think you’re great, you’re good at your job, but we really need someone full time – so the kids have continuity – and you need to focus on your health, that’s the most important thing.” Not strictly a whim then. Gah! Chronic illness! And as I’ve referenced before, in the distant blog past, I get easily attached – I’m Velcro Girl! Anything that feels like rejection turns me into a pool of sadness, a puddle of self pity. 

I find myself sans work, sans income, sans a third noun to complete this list of three. Woe. What to do? That’s an actual question for you to answer. WHAT SHOULD I DO? Answers on a lovely postcard please. 

Should I get over myself? Emerge from the metaphorical encasement of cotton wool I have wrapped so securely around myself? Volunteer? Do an online course? Acquire some new skills? Sink further into the morass of self doubt I’ve tripped into and have been making feeble, mainly for show, efforts to pull myself out of for, oh, x number of years? 

Someone wise, I assume, once said that MS without fatigue would be nothing. I tend to agree. 

* would’ve made a good title, don’t you think?