Feminist, cis-gender, female, straight, white-British, married, cat-owner, very short-sighted, very short height-wise, supply teacher (English), Guardian reader, 6music listener, bad driver, red wine drinker, introvert, person with ms, reader of books, 37 years old, sister, daughter, small town dweller, worrier, easily amused.
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…
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.
- 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.
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?
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.
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…
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 buzz of late summer midges clouding around your head.
Mathematical equations scrawled on a pane of glass, signalling troubled genius.
A shoal of fish flashing silver into black, semaphoring their way who knows where.
A murmuration of starlings folding against a mid autumn sky.
I am neither young nor old.
They say she has something of the night about her.
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.
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.
It’s a common feeling, I’m sure. As if there’s a block in your mind. Like a piece of card shutting off a particular route in a lab rat maze. Or a farmyard gate that keeps sheep in and foxes out. I feel that my mind is a safe haven for fluffy mindless sheep and that all the clever wily foxes have given up and gone elsewhere.
Here’s the state of play!
So. Way back then I had my first lot of Lemtrada. Since then, well, it’s all been very meh. And now my thyroid’s gone all hyper and I totally underestimated the effect that can have on a fellow. I mean, dude, it’s savage. Or not savage, more shit.
Main News in which the first paragraph is put into a nice bit of yummy context.
Pretty much one year ago I initiated the ‘Seeing How Being A Supply Teacher Works Out’ plan. My conclusions? It doesn’t really. Because – pay attention children, a lesson is on its way – turns out when getting paid irregularly, it’s wise to save for times ahead rather than doing as I’ve done which is to say, going: “yay, I have been paid and thus I shall buy many things.”
But, and this is where the block comes in, if not supply – what? I like teaching but I do not feel up to even being contracted to work part time in a specific school. I get so tired you see – and it only recently occurred to me that mental fatigue affects one physically.
When I try to envision a different role for myself, shutters come down. Alternate paths blur. All signs shift out of focus.
I entirely have not a clue what to do.
This is a complete selfish and superficial and pathetic thing, but money – I want to earn some. There are books and records and clothes and trinkets and travels and tickets and meals that I want! And looking at my pre-MS payslips and thinking about what I could have if it wasn’t for MS upsets me.
Would that it were. Trippingly.
And the block. When, as today, I’m not working – I honestly don’t know what to do with myself.
Like a little lab rat but with no purpose.
I hate MS it makes me feel like a loser.
*can’t get the spacing right, sorry.
Watchers of Game of Thrones. Picture Jon Snow. Eyes snap open. Massive inhalation of air. Now replace Jon Snow’s handsome face with mine. Yeah? You see? NB: If you don’t count yourself as a GoT fan, I have no time for you.
No – wait! Come back – slow down… Man, I was joking. Stay. Please. Just for this one little post. Okay. We good? Then I’ll begin…
Unusually for cynical little old me, I’m feeling quite positive at the moment. Maybe it’s the darling buds of May, the longer periods of light, or perhaps I’ve had a knock to the head?
Over the past couple of weeks I’ve started visiting a cool little yoga studio near to where I live and, despite going only a handful of times, I can totally detect a difference both in terms of my state of mind and my walking – speed and balance. Although my level of fitness is embarrassingly low and I’m pretty much as flexible as an actual wooden oar. Or metal golf club. Make up your own simile forgod’ssake.
And, just this very bird-song filled morning, I did visit a neuro-rehab psychologist to have my particular needs assessed. I didn’t know what to expect and, as I’m still me, worried that I may be completely wasting their time, but turns out it was excellently helpful. Basically I vomited out my life story – or, rather, the MS bits of it – and hopefully the psychologist didn’t think me mad. [literary reference alert!] Perhaps, like Blanche DuBois, I shall be collected later today and carted off to some sort of asylum [literary reference ends!]
Who knows when I’ll be back? I’m sure you’ve got plenty to keep you occupied in the meantime. Off you go now – it’s too nice a day to be stuck inside after all.
I haven’t written a blog post for sixty-one days. That’s a lot of days. Mainly, I just want to alert you to my continued existence. The Lemtrada? Well, so far – nothing’s really changed… I know it’s not expected to, and it’s only been eight weeks… And I’m in bed not at work with a cold evolved into a stomach bug which isn’t being fought off super efficiently due to my current lack of lymphocytes and also, I think, because I’m a (supply)teacher and kids have bugs and also (like most adults) do not wash their hands with sufficient vigour: time: happy birthday twice; soap: more than you think is necessary; water: hot. Thank you. In reading news, I’ve just finished Elena Ferrante’s Neapolitan novels and a character, Lila, has the fantasy of disappearing completely, erasing herself entirely, which at the age of sixty-two she manages (not a spoiler): sounds good right? Just saying. Anyway. I can’t give everything away.
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.
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.