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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A Spur Of The Moment, Ill Thought Out Post. 

Anxiety, Apocalypse, Cats, Dissolving into liquid sky, Fatigue, It's not fair, Lemtrada, Life is hard, MS, Multiple Sclerosis, Wasting the day, Worry

I can be found midway between dismay and despair. 

My thyroid has gone hyper again. This is no fun. 

I can’t remember what it’s like to be well; I tend toward the melodramatic. 

I am so bored. 

Having to continually tell your teaching agency that no, you’re not available for work – again, is a little destructive to whatever self esteem your diseased self has in store. 

I think if I learned a new language, or a musical instrument, things would be better. 

Maybe stop obsessively reading The News. 

Remember: a life spent reading – that is a good life. 

Me and my cat. Always together. Perhaps start a humourous comic strip? Photocopy and place in local shops, bus stations, library books, post offices. 

Construct a bunker in my back garden, what with Current Events. Decorate with fairy lights, bunting – to keep spirits up. Also: bottled water, canned food (variety of beans, vegetables), books, wine. 

Practise meditation. Learn to calm mind.

Look at art.  

Science Fiction 

Apocalypse, Fatigue, It's not fair, Lemtrada, Life is hard, Medication, MS, Multiple Sclerosis, Worry

In 2016 there were 7.4 billion people on the planet. Now? As of the last count, around 9000. All living underground. Radiation levels up above are still too high – although, we’re told, it won’t be long now. Just another decade, or so. 

Archeologists scratching away closer to the surface than ever before have been uncovering more and more evidence of life before –  well – you know your history as well as I do.

Their latest find looks to be a diary of some sort…

***

14/11/16

One year since my first lot of Lemtrada, second course coming up in a couple of weeks. And. Let’s look back over the last twelve months. 

😣

For a time, I’m sure, things were okay. But, at the moment, it feels like I’ve never not been ill. Yes, the MS’s being kept at bay – my last MRI showed NO EVIDENCE OF DISEASE ACTIVITY. Which is good, obviously. But. Since my thyroid went haywire however many months ago, I hardly seem to have had one day of alrightness. And I’m sure it’s broken again. So. In conclusion. 

😣

***



Yeah. Could someone just rebury it? Thanks. 

A very brief Lemtrada update. 

Lemtrada, Life is hard, Medication, MS, Multiple Sclerosis, Noise

 As I write this egg timer length post, it’s 5:29 and the elderly lady in the bed across the room is snoring like a trooper; I’m trying to block out her alarmng growls through the medium of Kate Bush.   
Day two

In my previous post I believe I dropped the words ‘naïveté’ and ‘hubris’: O my friends, how appropriate these revealed themselves to be yesterday eve’. The (in)famous Lemtrada rash did reveal itself in all its itchy and unattractive glory. Didn’t love it, gotta say. But, true to what I’ve been told, an IV shot of antihistamine sent it on its way with relative swiftness. Still though. Another club I’ve reluctantly joined. Felt pretty shitty throughout the night to boot. Slightly headachy. Slightly nauseous. Slightly stomach achey. Slightly night-twitchy. Thank god I wasn’t at sea; who can say how much worse that’d have been?

A final grain of salt tumbles through to the bottom chamber, time’s up my friends. 

The Lemtrada diary. 

Cats, Lemtrada, Medication, MS, Multiple Sclerosis, Snazzy pyjamas

Hey folks! Alright? You thought I’d gone, didn’t you? Were you upset, distraught, bereft? Say yes. I simply couldn’t bear it if I believed that you didn’t notice my absence. Say you did. Tell me you still care. You still love me? As I love you and will for all eternity! Too much? O my dears. Here I am. Ready? Let us get this ‘party’ ‘started’. 

  
Day zero

My treatment, provisionally, was scheduled for Monday. Alas, I was unable to secure a bed until yesterday – Thursday. Twas but no room at the inn. If you get me. But, rejoice! O frabjous day! Callooh! Callay! In the evening I made my tentative arrival. I sat on my bed and dispatched my parents to get coffee or something so I could get some ‘me time’, unpack, appear to be an actual capable adult etc. Although acknowledged, I wasn’t admitted for some time. My uxurious (!) D arrived post Mum & Dad leaving and we dined together at the hospital restaurant. The romance! I’m pretty sure D swooned. He’d had a busy day. Fast forward. Skip the boring bits. Rather the even more boring bits. Sleep difficult. Man shouting for help for extended period through night. Person in next bed intermittently annoyingly snoring. Gar! Doctor approaches bed wielding small torch at midnight. I’ve started to drift into proper sleep and answer his questions confusedly. 

Day one

I wake early. Everything happens early. Correction. Some things happen early. I’m given an antiviral tablet.  I fall asleep to my audiobook. I’m woken all startled and starry eyed like.  Bed sheets are changed. A cannula is inserted by a lovely nurse. We talk about tattoos (she shows me pictures on her phone); being a public sector worker under the Tories (*spits*); the similarity of experience for teachers and nurses – bureaucracy, low morale; me. This must mean it’s all happening! I text a picture to, hmm, people – so they can see I’m all ready. I wait. 

And wait

Wait a bit more. 

Read a novel. Really. The whole of one! A Disorder Peculiar to the Country.  As seen on Catastrophe and listed as one of Sharon Horgan’s cultural highlights in the Observer. I’m nothing if not predictable. It’s good. Check it out.   

Ate hospital food. I was expecting awfulness but it was surprisingly okay. Boredom in hospital = much eating just to pass the time. Downer. Not enough tea though. I require pretty much perpetual chai. Large flask delivery from Mum & Dad tomorrow will hopefully fix this. Yawn. Boring detail. Soz, man. Onward! 

Because we haven’t seen him for a while.

 
15:00 or thereabouts. One hour steroid infusion. Another antiviral tablet. Paracetamol and antihistamine. To ward off possible side effects. Steroids give you an unpleasant metallic taste in your mouth. Plus you can’t sleep. Hence this (it’s past midnight, sister!) and why steroidal muscle men are so angry. 

Wait an hour. 

Lemtrada infusion! Why we’re all goddamn here. Takes four hours. Blood pressure, pulse, temperature taken every fifteen minutes by me, surprise and very very very welcome visitor D, a nurse. D told off for sitting on the bed. Even though he basically weighs that same as an averagely sized bird’s nest. Theoretically. 

It was fine. 

Side effects usually manifest themselves on days three or four. Rashes. Itching. Stamped on by antihistamine ‘boot’ easily and rapidly. Not too worried. Naïveté? Hubris? We’ll see, innit.  

So. All in all. At and well after the actual literal end of the day. All’s good. 

Goodnight x