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

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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.

Coming out.

I'd like to sit down please, MS, Multiple Sclerosis, Not in that way

Before we start, it would be crass to compare sharing that you have MS to declaring your sexuality in a world that, in places, is still hostile and where many still face persecution.

Our topic today, as you may have guessed from reading the subject line – well done you! – is coming out as an MS-er. Such fun!

Let’s start from the beginning.
Immediately after diagnosis, I think like a lot of MS-ers, my initial feeling was relief; I’d already figured it out myself so the neuro was just confirming what I already knew. So I had my ‘told-you-so’ moment. Silver-linings…

Breaking the news to family and friends is an odd experience. You’re both the bringer of bad news and the person who comforts them as it sinks in. I remember being quite nonchalant about it: “yeah, it’s MS but, you know, it’s not a big deal – not a real disease like cancer – I’m fine. Let’s talk about you instead.”

It took me far longer than it should to appreciate the seriousness of it. As I’ve said before, MS is a devious bastard and I’m quite stupid. That’s me in the corner, that’s me in the spotlight failing to accept that I’ve got a moron chronic illness. Lousy.
I’m getting off topic. Digressing. Deviating. Straying from the path.

Red Riding Hood, yesterday.

What was I talking about? Oh yes: coming out.

Initially, I avoided telling people. Why would I? I had a sense of shame about it. Like it was just typical of me: You have MS – Oh Ema, what are you like?!

I was embarrassed. I didn’t want to be seen as an ‘ill’ person, a person who was weaker, somehow less than ‘normal’ people. I didn’t want to join the mass of the unwell: the stumblers; the people who walk with sticks; the wheelchair users; the shakers; the people in the street that you look at for far too long; who children ask their parents questions about, in voices that are far too loud to be considered polite. Those people.
Of course I realise now how ridiculous, let alone offensive, that point of view was.

Part of it, I think, is the total lack of knowledge most people have about MS. Why would they know about it? I remember one person that I told, in a professional context no less, saying to me, “isn’t that the ‘yuppie’ disease?” – confusing it with ME, I presume. I wish I’d been more strident in my reply rather than retreating into polite embarrassment. Anyone who knows, really knows, would never, ever say that.

After my ‘devastating’ relapse, I’ve found myself coming-out all over the place. As it were. It’s pretty much become the second thing I tell anyone, after my name.

Realistically, most people don’t need to know. I think I’ve started to leak the information so incontinently because I feel obliged to offer explanation for why I’m walking kind of slowly, why I’ve let someone pass me on the stairs, why I really really need to sit down for a bit.

Aside: I love this record.

A mini-flashback. In a shop with my Mum at the beginning of my long recovery, she overheard me telling the person at the till. Afterward she said to me that it was the first time she could recall hearing me saying “I’ve got MS.” I don’t know what that means. Well, I do. Something about acceptance?

I think I’m finding a balance now, between spurting it out haphazardly to anyone who has the pleasure of stepping into my vicinity and shrinking in opprobrium at the very idea of telling anybody.

So that’s my post about coming-out as an MS-er. You’re welcome. Are those for me? You shouldn’t have! Silly.

More MS-capades soon.