I can’t think of a title for this post. 

Anxiety, Dissolving into liquid sky, Employment, Fatigue, I'd like to sit down please, It's not fair, Life is hard, MS, Multiple Sclerosis, Wasting the day

Well. [Aside: As an English teacher, I often put a cross through this word when a kid starts a piece of writing with it, for example: ‘Well, Juliet is eager to hear…’, or ‘Well, it was a sunny afternoon’.] However…

Well. It’s been some time since last I wrote. It’s a cloudy afternoon and I am doing absolutely nowt. Apart from this, obviously. And continuing to exist. I’m not gas, drifting through a vacuum.* Obviously. I’d forgotten how literal you are, Imagined Reader. Let’s try our best to get through this, then you can go back to whatever it is you occupy yourself with these days. 

I find myself to be emotionally fragile. A supply teacher can be dropped according to the whims of the school. Listen: “we think you’re great, you’re good at your job, but we really need someone full time – so the kids have continuity – and you need to focus on your health, that’s the most important thing.” Not strictly a whim then. Gah! Chronic illness! And as I’ve referenced before, in the distant blog past, I get easily attached – I’m Velcro Girl! Anything that feels like rejection turns me into a pool of sadness, a puddle of self pity. 

I find myself sans work, sans income, sans a third noun to complete this list of three. Woe. What to do? That’s an actual question for you to answer. WHAT SHOULD I DO? Answers on a lovely postcard please. 

Should I get over myself? Emerge from the metaphorical encasement of cotton wool I have wrapped so securely around myself? Volunteer? Do an online course? Acquire some new skills? Sink further into the morass of self doubt I’ve tripped into and have been making feeble, mainly for show, efforts to pull myself out of for, oh, x number of years? 

Someone wise, I assume, once said that MS without fatigue would be nothing. I tend to agree. 

* would’ve made a good title, don’t you think?

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.  

Science Fiction 

Apocalypse, Fatigue, It's not fair, Lemtrada, Life is hard, Medication, MS, Multiple Sclerosis, Worry

In 2016 there were 7.4 billion people on the planet. Now? As of the last count, around 9000. All living underground. Radiation levels up above are still too high – although, we’re told, it won’t be long now. Just another decade, or so. 

Archeologists scratching away closer to the surface than ever before have been uncovering more and more evidence of life before –  well – you know your history as well as I do.

Their latest find looks to be a diary of some sort…

***

14/11/16

One year since my first lot of Lemtrada, second course coming up in a couple of weeks. And. Let’s look back over the last twelve months. 

😣

For a time, I’m sure, things were okay. But, at the moment, it feels like I’ve never not been ill. Yes, the MS’s being kept at bay – my last MRI showed NO EVIDENCE OF DISEASE ACTIVITY. Which is good, obviously. But. Since my thyroid went haywire however many months ago, I hardly seem to have had one day of alrightness. And I’m sure it’s broken again. So. In conclusion. 

😣

***



Yeah. Could someone just rebury it? Thanks. 

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. 

A very brief Lemtrada update. 

Lemtrada, Life is hard, Medication, MS, Multiple Sclerosis, Noise

 As I write this egg timer length post, it’s 5:29 and the elderly lady in the bed across the room is snoring like a trooper; I’m trying to block out her alarmng growls through the medium of Kate Bush.   
Day two

In my previous post I believe I dropped the words ‘naïveté’ and ‘hubris’: O my friends, how appropriate these revealed themselves to be yesterday eve’. The (in)famous Lemtrada rash did reveal itself in all its itchy and unattractive glory. Didn’t love it, gotta say. But, true to what I’ve been told, an IV shot of antihistamine sent it on its way with relative swiftness. Still though. Another club I’ve reluctantly joined. Felt pretty shitty throughout the night to boot. Slightly headachy. Slightly nauseous. Slightly stomach achey. Slightly night-twitchy. Thank god I wasn’t at sea; who can say how much worse that’d have been?

A final grain of salt tumbles through to the bottom chamber, time’s up my friends. 

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

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. 

  

Stuff that makes life more difficult #997. 

Feminism, It's not fair, Life is hard, MS, Multiple Sclerosis, Periods, Women

This post is all about PERIODS.  

 *polite/awkward applause

Read on, my friends. 

Because PERIODS, men, are mother-cussing awful. Like totally bad. Standup comedian Tiff Stevenson was quoted in The Guardian as follows: 

Why are we being told we can’t talk about this thing that happens to us every month?

Er, yeah? At the moment there’s a (red) tide of conversation building up. Google ‘If men had periods’ and take a look at the hilarious spoof ads – and then have a think. Because for as long as forever women’s monthly shitperience hasn’t been seen as valid. 

Let’s test out an example:

Okay, I’m a teacher. I’ve got my annual performance management lesson observation. My PERIOD started this morning. My breasts ache so much that just having my arm incidentally brush my chest as I, I don’t know, point to something in a kid’s book, makes me actually wince. And I went to bed last night with a killer headache and woke up this morning with the same killer headache. I’m bleeding so much that I know, realistically, I’m needing to rush to the toilet to change my tampon between lessons or my pants’ll be stickily stained for the rest of the day. But at least, because I knew it’d started, I’m wearing my special, reserved for PERIOD days, old, saggy, don’t mind so much if they get bled on pants, which I’m betting all women have. Except for Kim Kardashian, obviously. Also I feel gross. As well as my special PERIOD pants, I’m also wearing one of my special PERIOD tops – you know, the ones that help to cover up your bloated PERIOD stomach? Exhausted too, extremely. But, I soldier on. Don’t mention it. Like all women, every month. 

What’s that? Oh, you’re reminding me that this is allegedly, or at least trades under the name of, an MS blog. You’re right. Well, luckily, there’s a link to be made! Phew

PERIODS make some women’s, including mine, MS symptoms worse. MS. The illness that just keeps on giving. So, for me, my walking gets a bit more unbalanced, more stumblily. My face feels a bit more spasmy – I have tablets (Gabapentin) so you, the innocent onlooker, can not tell – but it keeps me awake as night. It’s hard to sleep whilst your face is twitching all about the place. And I feel a bit (a lot) more shitty. 

There’s more. One time, dearest reader my PERIOD was about four weeks overdue. D and I had, reasonably, begun to think this might be it. And I was teaching my year 10 class when I felt it coming on. As soon as class was over I rushed to the toilet and, indeed, there was blood. So I found D (this was when we worked together), took us off to a quiet corner, had a mini-cry. That’s something else the can happen. In any given situation.  

Here’s some facts:

  • only 12% of girls, worldwide, have access to safe, good-quality sanitary products;
  • poor access to menstrual health is a huge part of discrimination against girls and women;
  • in Africa, one in 10 girls misses school when she has her period because of the lack of information and adequate facilities.

The knock-on effect of this stigma is huge. It’s not some small, private issue.*

*Much of this was taken from a piece in The Guardian: Bring on the menstruation revolution: ‘Donald Trump is going to bloody love it’

And. Shockingly. Sanitation products are taxed as luxury items! Really. Do a fact check. So my idea is, each month, along with a stamped addressed envelope for their return, we post all of our bloodied knickers to the treasury with a note explaining that, regretfully, as tampons are such a luxury, in this time of austerity we felt that we couldn’t afford to spend our hard earned money on such fripperies, so would appreciate our underwear being properly washed or replaced, thank you. And then, we’ll see.