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I HATE BEING CHRONICALLY ILL

Anxiety, Career, Cats, Damn like or damn comment on my damn blog! Thank you., Employment, Fatigue, Happiness, I'd like to sit down please, Insanity, It's not fair, Life is hard, MS, Multiple Sclerosis, Sexy foxes, Why aren't I Patti Smith?

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. 

And. 

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. 

MS means you never feel okay. 

Dissolving into liquid sky, I'd like to sit down please, It's not fair, Life is hard, MS, Multiple Sclerosis, Why aren't I Patti Smith?

Hey. How am I feeling today? Uh. You want an honest answer? Okay. Pretty shitty really. 

Oh, you do too? 

Late night? Too many wines? Busy at work?

Yeah, well, whatever man. Seriously. Shut up. STFU. Because, really, I know you’re just trying to be empathetic – but your feeling a bit off is not the same as my feeling a bit off. Because feeling a bit off is my day to day normal. Because having MS means you hardly ever feel just okay. 

There’s always something. 

A niggle. 

Your head feels entirely numb; you don’t quite feel part of reality. 

You’re pretty convinced that some nefarious ne’er-do-well had performed a blood to concrete transfusion on you, while you slept. Also tying invisible two-tonne weights to your arms. 

Etcetera. 

And, if you’re me, which I am, you eternally feel fraudulent. Like you’re making it all up. 

How am I feeling today?

Yeah, I’m fine. 

  

Educationalist superhero.

Death, Education, Employment, Feminism, I'd like to sit down please, Noise

Mid-afternoon.  The house seems eerily quiet. Only the tinny sound of music from iPhone speakers, the ever-comforting murmur of a light comedy repeat on Radio 4 leaking from the kitchen, a psyche-rock record playing in the dining room and a long-unwatched BBC4 documentary still unwatched, but playing, in the living room, break the oppressive silence. Outside a wind registering somewhere between light-breeze and force-10 gale unremittingly rages. Wandering from room to room, catching snippets of voices – some unfamiliar, some like old friends – from the various devices littered throughout the building that is, has been, and will always be home. Until the final days – be they apocalyptic or a soft drift into sleepy and then unknowing blackness.

How the mind wanders when one is awaiting a phone-call alerting them to the possibility of paid, yes PAID, supply-teaching work.

Like an educationalist superhero, I shall don a professional yet comfortable, authoritative looking – but stylish, always stylish – smock dress, perhaps a cardigan for it is chilly and also I have bought a new one, in, let’s say, mustard, pack my emergency-biros and a neccessary flask of tea (alas, will I ever find one that does not leak), and then I shall be off! Not flying but in my cardboard box car, ready to do my utmost to ensure that the educational chances of the poor mites of Shrewsbury (and surrounding areas) are not too adversely affected by the absence of their regular teacher. Heroic. Yet humble.

Hey man, it’s just who I am!

female-superheros

Possibly Maybe…Perhaps?

Fatigue, I'd like to sit down please, Life is hard, MS, Multiple Sclerosis, Sexy foxes

Hey, man. Let’s talk. I mean, I’ll talk, obviously, and you’ll listen. Because that’s our relationship dynamic, isn’t it?  No need to go rocking the metaphorical boat. Let’s settle into our comfortable groove, tred that well-worn path, commence this post.  

 
Indulge me, if you will, by taking yourself way back in time to Monday. Oh how we laugh at the way things were then: the fashions, the turns of phrase, the hopes and dreams… *wipes tears of mirth from eyes* Are you there? Good. On Monday, dear reader, I was full of the joys of early summer. I had succeeded in successfully shunning Monsieur Fatigue!  


His wiles were not for me. No longer was I separated from the technicolour flurries of life by a gauzy film! I was both human and dancer! I cautiously tweeted my victory! I marked some coursework! Made some gluten and dairy-free brownies! Told my neighbour that I was fine now! Pontificated on which of the anti-fatigue strategems was my best piece of weaponry! A triumphant day indeed. 

O hubris! The downfall of many a story-tale hero. And an equal number of over-confident MSers. Monsieur Fatigue is more artful than I’d given him credit for.  

 Foxier. But not in a sexy way. Damn him!  

 
So, yeah, I’m back to feeling like gravity, in homage to Spinal Tap, has turned itself up to 11. 

Good times! Now get out. 

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.