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

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Acceptance. 

MS, Multiple Sclerosis

Acceptance. What do we mean by this? No, no. Hands down. I’m going to give you thirty seconds to write down your own definition. 

(You can take the girl out of teaching… )

Where were we? 

Once upon an unspecified time, in an unspecified place, an unspecified person said to me (#humblebrag siren!), “I think you’re so brave accepting it, I don’t think I could – I’d have to carry on, you know me...”.

No, I didn’t punch her/him. I did, perhaps a little more forcefully than is usual for me, say, “[Name], it’s not really a question of me ‘deciding’ to ‘accept’ it – I’ve been doing all I can to ignore it up till now”. Or something. Then when I got home, after recounting the exchange to D (as part of the usual lengthy monologue he enjoys, and I dare say looks forward to, each day on arrival home after work), I got angry. Then a bit angrier. And now, pretty furious.

Me, an unspecifed day.


Because accepting MS isn’t a choice you make.

Do you ‘accept’ it the first time you regain acceptable balance after a near plummet into a stranger’s path, after extravagantly tripping over an entirely obstacle free section of pavement, and they respond by throwing quite a questionable look in your direction whilst you attempt to style it out? Or do you ignore it until sections of you start to go entirely numb and you can’t feel your partner’s hand on your leg, or anywhere, anymore? What about when one, or both, of your legs stop following the instructions your brain is trying to send to them and you have to use a stick, or a walking-frame, or a wheelchair?

Would she/he still not accept it? Are they an idiot?

Not accepting something that makes every effort, screams and shouts, to get your attention is like not accepting that you’ve turned up to work naked, and that’s why the boss wants a word. “No, I don’t accept that. I do not accept that I’m naked.” Or not accepting that the world’s round. That night follows day. That 2+2=4.

Because – cue rousing music – what I’m here to tell you is – Night’s Watch, are you with me? ACCEPTING IS NOT CAPITULATING!

Always, Jon Snow.

That’s what I should’ve said.

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.