A Spur Of The Moment, Ill Thought Out Post. 

Anxiety, Apocalypse, Cats, Dissolving into liquid sky, Fatigue, It's not fair, Lemtrada, Life is hard, MS, Multiple Sclerosis, Wasting the day, Worry

I can be found midway between dismay and despair. 

My thyroid has gone hyper again. This is no fun. 

I can’t remember what it’s like to be well; I tend toward the melodramatic. 

I am so bored. 

Having to continually tell your teaching agency that no, you’re not available for work – again, is a little destructive to whatever self esteem your diseased self has in store. 

I think if I learned a new language, or a musical instrument, things would be better. 

Maybe stop obsessively reading The News. 

Remember: a life spent reading – that is a good life. 

Me and my cat. Always together. Perhaps start a humourous comic strip? Photocopy and place in local shops, bus stations, library books, post offices. 

Construct a bunker in my back garden, what with Current Events. Decorate with fairy lights, bunting – to keep spirits up. Also: bottled water, canned food (variety of beans, vegetables), books, wine. 

Practise meditation. Learn to calm mind.

Look at art.  

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A window into my mind. 

Anxiety, Cats, Dissolving into liquid sky, Fatigue, Insanity, It's not fair, Life is hard, MS, Multiple Sclerosis, Quiet life, Why aren't I Patti Smith?

A buzz of late summer midges clouding around your head. 

Mathematical equations scrawled on a pane of glass, signalling troubled genius. 

A shoal of fish flashing silver into black, semaphoring their way who knows where. 

A murmuration of starlings folding against a mid autumn sky. 

I am neither young nor old. 

They say she has something of the night about her. 

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. 

The Lemtrada diary. 

Cats, Lemtrada, Medication, MS, Multiple Sclerosis, Snazzy pyjamas

Hey folks! Alright? You thought I’d gone, didn’t you? Were you upset, distraught, bereft? Say yes. I simply couldn’t bear it if I believed that you didn’t notice my absence. Say you did. Tell me you still care. You still love me? As I love you and will for all eternity! Too much? O my dears. Here I am. Ready? Let us get this ‘party’ ‘started’. 

  
Day zero

My treatment, provisionally, was scheduled for Monday. Alas, I was unable to secure a bed until yesterday – Thursday. Twas but no room at the inn. If you get me. But, rejoice! O frabjous day! Callooh! Callay! In the evening I made my tentative arrival. I sat on my bed and dispatched my parents to get coffee or something so I could get some ‘me time’, unpack, appear to be an actual capable adult etc. Although acknowledged, I wasn’t admitted for some time. My uxurious (!) D arrived post Mum & Dad leaving and we dined together at the hospital restaurant. The romance! I’m pretty sure D swooned. He’d had a busy day. Fast forward. Skip the boring bits. Rather the even more boring bits. Sleep difficult. Man shouting for help for extended period through night. Person in next bed intermittently annoyingly snoring. Gar! Doctor approaches bed wielding small torch at midnight. I’ve started to drift into proper sleep and answer his questions confusedly. 

Day one

I wake early. Everything happens early. Correction. Some things happen early. I’m given an antiviral tablet.  I fall asleep to my audiobook. I’m woken all startled and starry eyed like.  Bed sheets are changed. A cannula is inserted by a lovely nurse. We talk about tattoos (she shows me pictures on her phone); being a public sector worker under the Tories (*spits*); the similarity of experience for teachers and nurses – bureaucracy, low morale; me. This must mean it’s all happening! I text a picture to, hmm, people – so they can see I’m all ready. I wait. 

And wait

Wait a bit more. 

Read a novel. Really. The whole of one! A Disorder Peculiar to the Country.  As seen on Catastrophe and listed as one of Sharon Horgan’s cultural highlights in the Observer. I’m nothing if not predictable. It’s good. Check it out.   

Ate hospital food. I was expecting awfulness but it was surprisingly okay. Boredom in hospital = much eating just to pass the time. Downer. Not enough tea though. I require pretty much perpetual chai. Large flask delivery from Mum & Dad tomorrow will hopefully fix this. Yawn. Boring detail. Soz, man. Onward! 

Because we haven’t seen him for a while.

 
15:00 or thereabouts. One hour steroid infusion. Another antiviral tablet. Paracetamol and antihistamine. To ward off possible side effects. Steroids give you an unpleasant metallic taste in your mouth. Plus you can’t sleep. Hence this (it’s past midnight, sister!) and why steroidal muscle men are so angry. 

Wait an hour. 

Lemtrada infusion! Why we’re all goddamn here. Takes four hours. Blood pressure, pulse, temperature taken every fifteen minutes by me, surprise and very very very welcome visitor D, a nurse. D told off for sitting on the bed. Even though he basically weighs that same as an averagely sized bird’s nest. Theoretically. 

It was fine. 

Side effects usually manifest themselves on days three or four. Rashes. Itching. Stamped on by antihistamine ‘boot’ easily and rapidly. Not too worried. Naïveté? Hubris? We’ll see, innit.  

So. All in all. At and well after the actual literal end of the day. All’s good. 

Goodnight x

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

Metamorphosis. 

Cats, Dreams, Happiness, Insanity, MS, Why aren't I Patti Smith?

Dearest reader. Hey! Down here. I’ve transmogrified into a field mouse, you see. I’m typing this by daintily pirouetting across the keyboard. All is good. Although I’m wary of the beloved cat and his inbuilt and entirely natural intentions toward his now rodenty mistress. But apart from that tiniest of concerns, all is well! It’s nice scuffling about the place, occasionally emitting joyful squeaks on catching glimpses of my totally adorable little paws, nose and whiskers – whiskers! – in any passable reflective surface. Having whiskers is awesome, I tell you. No more crashing into door-frames for yours truly! 

You’re probably wondering, and why not, what?!?! And, indeed, how?!?!

All I can tell you is that, th’other morn’, post D leaving for work, I awoke to find myself cozily curled up, under duvet, at bottom of bed. transformed in my bed into a tiny rodere. 

My small mousey brain seems to lack the will or capacity to ponder the predicament I find myself in. 

Life is all delight. I nap, I nibble. I read. What a charm it is to scamper over pages, using my Lilliputian nose to follow my place – word by word, sentence by sentence – my savvy tail to turn the pages. 

What a darling image I’ve painted for you! 

 
*Yawns adorably. Stretching out her tiny, tiny mouse arms. Seriously. So cute.*

Squeak!**
**Fin!

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.

Stuff that worries me. 

Anxiety, Apocalypse, Cats, MS, Multiple Sclerosis, Uncategorized, Why aren't I Patti Smith?, Women, Worry

1. The inevitable consequences of runaway climate change because I’m frightened of a Children of Men/final section of The Bone Clocks/The Road future. How does one acquire a cyanide pill? Does one have to learn how to navigate The Dark Web? 

2. My MS getting really really really bad. Cyanide pill? Availability thereof? (I mean really bad). 

3. My MS getting really bad in a scenario such as outlined in 1.

4. Glasses breaking beyond repair if (when) an apocalyptic scenario does come to pass. I’m practically blind and I’m assuming that my supply of contact lenses won’t last indefinitely. They’re -11, thanks for asking. I know! [Note to self: get some glasses.]

5. Running out of my favourite brand of almond milk and Sainsbury’s (the only place that seems to stock it) running out too. Nightmare

6. A tarantula escaping from the home of someone I could never, ever be friends with and, in search of warmth, climbing into the engine of my car and, as I’m driving on a reasonably fast road, crawling into the car. I either die immediately (of fright) or die shortly after (of crashing into a tree or lorry). Just typing this increased my heart rate. 

7. The whereabouts of my cat at this moment. 

8. Unexpectedly coming across a picture of George Osborne and, before my brain’s had the chance to register what it’s looking at, feeling a glimmer of attraction. Horrible.  

Just no.

7. That I’m not widely read enough and that the books I’ve been reading are the wrong ones. 

8. Jon Snow can’t really be dead, can he? 

Definitely not dead.

9. That I’m simply a product of my time, entirely shaped by forces beyond my control. No original thoughts, feelings, responses, opinions, likes, dislikes…and does it matter anyway? Or that I’m the only sentient being in a world of robots…and does it matter anyway?

10. The whereabouts of the cat now. 

11. We’ve chosen the wrong colour for the living room. I wish it was white instead. 

12. Patti Smith. Björk. P. J. Harvey. Kate Bush. Viv Albertine. Neneh Cherry. Annie Clarke. Poly Styrene. M.I.A. Why aren’t I an amazing woman? 

 

13. Asteroids. Specifically hitting us.  

14. Is it normal to be 97% anxiety around 89% of the time?

15. Does this look like a small bruise or an early warning sign of cancer? Because I read that Bob Marley thought he’d just got a football injury but when it was too late…are you listening?

16. That I talk too much.