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.
Advertisements

Little grey cloud. 

Fatigue, Life is hard, MS, Summertime drinking, Wasting the day, Women

Hey you. Yeah, I know. I’m sounding all whiny and dejected, aren’t I? And it’s a beautiful sunny day so what’s my problem, like? Well. It’s hard to be a little grey cloud when the day’s so temperate. 

Let’s go through the circumstances that have led me to feeling so stratusy.  

 
Still off work. Fatigue. I’m so bored of it that I could barely muster the infinitesimal amount of energy required to type those seven letters. Gah. Etcetera. It’s been one of those days where I’ve constantly been doubting myself, questioning myself. Should I be at home? Is being medically signed off justified? Am I faking it, you know, for the extra hours in bed?*

This morning, once I’d dragged my sorry ass outta bed (I’m never using that phrase again, just testing it out, hate it), very half-heartedly semi-yoga-esque stretched, blended up a spirulina/spinach smoothie, drank said smoothie, after ALL OF THAT, I made a list. Oh lists. Where all (some) of the things start. Aside: I went through a phase of giving lists *hilarious* titles, such as ‘the last list didn’t kill me, I’d like to see this one try’ and such. Good times. Anyhow. The whole writing a list business made me feel weepy and oppressed. Damn the patriarchy! (I’m not sure I can hold the patriarchy responsible in this case).  

 
Little wander round my house. Took the stairs two at a time (whilst gripping bannister, obvs). Made myself use my (cheap’n’cheerful) exercise bike. Managed fifteen minutes before I was almost dead from being bored. I find exercise tedious. Someone tell me about an exciting way of exercising? Or make it so it doesn’t matter? And just drinking wine is okay?

That reminds me. This might be why I’m all irritable. Hot weather demands that you sit outside, al fresco, sipping on an alcoholic beverage.  

Me and L, in happy drinking outside times.

Sunshine and supping on a lovely, icy, refreshing G+T/beer/cider is one of life’s most innocent of pleasures. And we can’t even have that, apparently. Because of, like, something to do with your liver or some such nonsense. Hokum. I’m on a self imposed ‘dry’ week/few days. Stupid idea. Disclosure: not an alcoholic. Medication/natural lightweightness means I can only manage a couple of glasses of wine or whatever. But, you know, soft-drinks just don’t cut it on summer days like this. Erk. Pull yourself together, Ema. 

Finishing Naomi Klein’s This Changes Everthing has not helped lighten today’s mindset either. Please do read it. Although I’ve just (always) been entirely inconsequential, the urgency and necessity of doing anything and everything in our power, as citizens, to force our governments to wake up and take action, to do anything and everything in their power, to avert the very worst future scenarios that lay in store for us if runaway climate change is not averted – that sentence has run away with me – basically, it should be all we’re talking about.  

 
My butterfly mind however, directed me to Iplayer where I watched (for the second time), Father John Misty’s Glastonbury performance. He full on nailed it. So in his words: 

But everything is fine / Don’t give in to despair / Cause I love you, honeybear.  

https://m.youtube.com/watch?v=czninCkFfaA 
*Disclaimer. I’m not faking it.