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. 

  

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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

Insanity through inaction.

Anxiety, Cats, Employment, Happiness, Life is hard, Medication

Let’s set the scene.  A bar, midweek, early evening, some sort of social gathering. Music plays indistinctly in the background, inconsequential chat drifts across the room as friends of friends and acquaintances of work colleagues awkwardly exchange small talk.

The camera begins to zoom in and, deep breath, there she is! The writer (ofthisblog). Gazing pseudo-interestedly at an art print on the wall, sipping a glass of red wine. Responding to a gentle tap on her shoulder, she turns…

Hey! – it’s been, like, forever – where’ve you been?

Hey! – uh, y’know – here and there, back and forth – holidays and all that – but here I am – back now.

So, dear reader, if you’d do me the kindness of taking on the role of ‘guest at indeterminate social gathering’ and I’ll be me. Don’t worry, you won’t have to do anything but listen, and do try to maintain eye-contact. I’ll be mainly monologuing.

Where do I start? Let’s go with MEDICATION.

If you think back, you’ll remember that I was hoping to stop Tysabri sooner rather than later – the two-year deadline is mid-November – and start ‘my Lemtrada journey’. Near to the end of August, I had an appointment at Royal Stoke University Hospital with their neurologist, who I liked a lot, and he said “yeah, that’s fine” – or words to that effect. Yesterday (yes, just yesterday) his MS nurse called and asked me to go in to see her next month and told me I could stop Tysabri immediately! This is good news. There’s a three-month wash out period so the Lemtrada won’t happen yet, but still. I shall tell you more as and when…

UNEMPLOYMENT

To sleep in and not have to deal with all that the first day of a new school year entails was delicious. The rest of the week though? I fear I was perhaps a little crazy by Friday. It’s the not doing anything, man. I mean, obviously I haven’t literally done nothing at all. I’ve read quite a bit. Listened to podcasts. Had my hair coloured. Hung out with the cat (can you spend too much time with your cat?). Not made myself a schedule which I had sworn was something I was definitely, without a doubt, for sure going to do. I spent the week stagnating. My brain disintegrating, My conversation collapsing.  Maybe I’m exaggerating a smidgen. I need some supply though, unless I am to be incarcerated in debtors prison. Or sectioned. One or the other looks likely. Might get a book out of the experience though, so swings and roundabouts.

Anyhow. Is that the time? I must be away! Things to do!* People to see!** Madness to stave off!***

Swiftly gulping the last of her wine as she stands to leave, you wonder when, and if, you’ll see her again. As she heads for the door, a voice cuts through the now alcohol-lubricated chatter,

Is this chair free?

chair

*Lie.

**Lie.

***Not a lie.