Ten Years Post Diagnosis: Reflections or Fuck. This. Shit.

Apocalypse, Be nice, Chilling on my goddamn superyacht., Death, Dissolving into liquid sky, Fatigue, Feminism, Happiness, I'd like to sit down please, It's not fair, Lemtrada, Life is hard, Medication, MS, Multiple Sclerosis, Vegetarianism, Women

Ten years, then. At diagnosis I was 27nearly28, so the mathematically inclined reader will naturally put two and two together (or add ten which, in this case, makes more sense) to find that I’m now 37nearly38. Rapidly approaching my three-score and ten. Or forty. Ridiculous.

Imagine, if you will, a school reunion scenario – and that Facebook* never existed so everyone doesn’t already know everyone else’s business anyway.

“Ema, hello, please fill me in on the details of your life since last we met.”

“Gladly. I have developed and continue to live with a chronic illness. Plus I would never go to such an event and have no interest in your stupid life.”

Such are the workings of a fully adult mind. Look ye on my sophisticated brain and despair!

Think of a way to link this paragraph to the last! Thanks. Finally gone vegetarian. Pescatarian. Few pesca, many vege. I’m Being Ecological. Read this book, by Timothy Morton. Had to reread each paragraph about three times to give myself a shot at vaguely understanding it. We’re being ecological just by living, breathing and occupying the same space as all the other human and nonhuman beings on this planet, man. Changed my life. Or viewpoint. Or at least something. Another book. Not a good one but one I found helpful. The Unexpected Joy of Being Sober by someone but I can’t remember who. Also mindset altering. Plus, obviously not sober, but drinking less which is better. ‘‘Tis all a work in progress. We must be kind to ourselves. Stop beating yourself up! You are not in Fight Club.

See, being close to a human constructed milestone (Being Forty), has triggered in me a fix-ur-life-up kind of thing. I think it’s about surrendering to the process. What’s the endgame? Where do you (I) want to get to? Ethically, health-wise, fitness and body-wise. Aiming for well-toned-vegan-ethical-nightmare. Although.

Literally, it’s a return to the earth, the dust, the air from whence we came. (Out, out brief candle!) Surrendering to the eventual and inevitable end: a goodbad idea.

We’re not here for long so remember to turn the lights off and don’t make too much mess.

In conclusion. Reflecting on the last ten years through my MS-tinted glasses. It’s a bit shit, really. A more detailed and boring reflection: the Lemtrada‘s working, last few MRIs show No Evidence of Disease Activity (NEDA), I’m mostly exhausted which is awful, I bore myself.

End with a joke. Thank your audience. Vacate the stage quickly. Lights out.

* scandal-hit

Advertisements

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.

The world is a terrible place for sensitive people.

Cats, Employment, It's not fair, Medication, MS, Multiple Sclerosis, Seasons, Why aren't I Patti Smith?

The world is a terrible place for sensitive people

but the closer we come to losing our minds, the harder we’ll work

to keep them.

Kate Tempest

Autumn’s an odd season.  It makes me… feel. Like Spring, it’s a time of transition, but instead of rebirth and renewal, it’s all about death – and hibernation; going to sleep until things are better. Trees are discarding their leaves as if the previous few months meant nothing to them. And for a brief moment, nature is so beautiful that it’s bordering on the ridiculous.  Seriously, nature: the human brain is only equipped to deal with so much loveliness. Turn it down a bit. See, being hugely sensitive to beauty is hard,  See above quote, if you will. 

I haven’t done this for ages, so forgive me if it’s a bit rusty, a little muddled – rubbish. I think I’m going to write about three things: being a supply teacher; my impending Lemtrada treatment; miscellaneous.

Being A Supply Teacher

S’alright.  So far, I’ve had quite a gentle introduction by working in two pretty nice schools with pretty nice kids.  The first place, which I really liked, were looking for someone who could work full time; three days are my limit. And if MS is about anything, it’s about learning what your limitations are. Man, I hate limitations.  So I couldn’t stay at that school, alas etc. The second school I was dispatched to, up to this very week, was the one D works at. Nice to work at the same place again for a bit. Unfortunately, they want someone who’ll work full time as well. Damn the ‘Man’ and his cash-orientated society/random allocation of chronic illness, specifically to me. So post-half term I fully expect to be rocking up at a less than pleasant Secondary, looking forward to being entirely ignored / possibly helplessly watching as kids conduct some sort of missile based tactical warfare across a shabby 50s built classroom, whilst any senior member of staff has gone mysteriously AWOL. IT’S ALL GOOD, THOUGH. Thing is, this supply, it has reminded me that I do like teaching, being in a classroom, interacting with those odd little youngsters that are, apparently, our hopes and dreams for the future. I think I get too attached too easily. Like I do with puppies and kittens. I’m a sensitive person.

Impending Lemtrada Treatment

This is both a good and a scary thing.  And it’s exactly one month away. So, what happens, or has happened, is I had to have a load of blood samples sent away to be tested for, you know, things – like HIV, TB (?!), Hepatitis, stuff like that, and a chest x-ray, conducted by a disarmingly (apologies D) HOT man who had an adorable East Midlands accent, which I love (reminds me of Nottingham), and addressed me as “duck” –  I know – so that was nice. And I got to wear a hospital gown, which I never have before, and I think they’re great – I would like a dress cut in that exact shape.  In fact, I’ve just realised, the dress I’m wearing right now is about 89% hospital gown-ish in its design. I’ve become distracted and deviated from my topic. Soz. Anyhoo.  In one month I shall be ‘checking-in’ for a week’s stay at Hotel Le Stoke Hospital and once there, I will be enjoying five days of IV drips sending steroids, anti-histimines and Lemtrada right up into my blood stream via a vein. And my immune system will be all trampled by the heavy boots of the aforementioned drug. And then I shall leave the hospital, and lo, will be all weakened like a lovely kitten, and will henceforth take to my bed, where I will repose until I am well enough to be transported to my lovely rocking chair, where I will sit covered by blanket and surrounded by cushions and cat, and there I shall drink endless cups of restorative chai, and read much edifying Literature, until my convalesce is complete, and I shall emerge reborn with an immune system that DOES NOT ATTACK ACTUAL ME. How appropriate that I am to have my treatment in Autumn/Winter. Good times.

Miscellaneous

Mate. Mo money mo problems? I think I could cope with that. Just a bit mo money would be downright first-rate capital. Although being a supply teacher is great, if you’re not working you’re not earning – and I’m going to be not working for a good two months, what with C’mas and all.  Basically, don’t expect a present and can you lend me a tenner? Hey-ho. Worse things happen at sea, I presume. Drowning, shark attacks etc.

This bit’s a mass apology. I have a tendency, as y’all know, to go quite hermity at times.  Metaphorically wall myself up in my cave. So I’ve not been good at responding to various missives: emails, texts, yellowed parchments in ancient green bottles. Sending birthday greetings. So, sorry? If that applies to you, I fall at your feet and offer to throughly prostrate myself whilst not making any promises to be better in future. That okay?

The world continues to go to shit, I continue to cry at news, read good books (Patti Smith’s M Train – still recovering from that), listen to good music (Gwenno – excellent reading to music on account of me not understanding Welsh and therefore not becoming distracted by lyrics, but mainly just great; also, Sexwitch. Totally love that name.) 

Nap, 

sleep, 

O perchance to dream.

blog 23 oct pic

About Me

MS, Multiple Sclerosis

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, misophonic, reader of books,  37 years old, sister, daughter, small town dweller, worrier, easily amused.

I will never get through all these podcasts.