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 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

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.

Just write something, anything…

Fatigue, Life is hard, Medication, MS, Multiple Sclerosis, Snazzy pyjamas

This blogging business is hard. See, I want to ‘keep at it’. Actually stick to something. For once in my goddamn life. Develop a ‘voice’. Find out if I can ‘write’. Whilst also informing, educating and entertaining. Although, however, but – I have naught to say. 

Look at this while I have a think.  

 
Yes, it’s a dog sadly woofing. In a pop-art style. Wonderful. 

I’m on my summer holiday. My ‘summer’ ‘holiday’ rather. It’s cold, grey, raining and I’m at home. I hope death isn’t like this. Remember, I’m a cheery ray of sunshine!  

 
In my previous, like, billion posts, I’ve been droning on about that recurring character of my life I have named Fatigue.  

Notice the capital letter proper noun-ness I have awarded ‘him’. Thank you. I’ve had pins stuck in him. Acupuncture, I believe ‘they’ call it. Has it worked? Maybe. Hard to say. Perhaps. Not sure. Could have done? Might have. I think I’m less fatigued. Monsieur Fatigue may have taken himself far away from me. Hopefully one of the pins went right through his eye-hole into his tiny man-brain thus rendering him dead and therefore ineffective. I hope his ghost doesn’t come and haunt me. I don’t want spooky fatigue. I hear that’s worse even than normal fatigue. Anyhow. That’s that. As ‘they’ (who?) say. 

Next paragraph. 

Medication.  See post: Pills, thrills and bellyaches. Written in the past. By me. 

So, if you’ve completed the required reading you’ll be au fait with my current ‘situation’, which is that I’m nearing the end of my Tysabri time. And I would really prefer to end it sooner rather than later. I’ve got an appointment near the end of August with a neurologist to, hopefully, take the first steps in what, I believe, Simon Cowell requires us to call the ‘Lemtrada journey’. What’s Lemtrada?, you’re undoubtedly asking, in that whiney tone you reserve for asking questions. I’ll endeavour to answer but, I’ll issue a warning, I can’t be bothered to do any research right now, not in the mood, so I’m going to rely on my own shaky powers of recall. 

Lemtrada. Lemtrada does something that ‘turns off’ your/the MS in some way that I can’t remember and don’t fully understand. It’s administered as an infusion over five days, then a year later, over three days. And that’s it. Except, I think, that can happen two more times. Or something. You have to stay in hospital while you get infused, so that’s an opportunity to get some snazzy new pyjamas and, fingers crossed, a stylish robe and some excellent slippers.  

These are snazzy pyjamas indeed.


The reason you have to be hospital bound is because your immune system is being totally wiped out so you’re all susceptible to infection and have to be monitored by medical professionals. Lest you go and die. I’m being melodramatic, this doesn’t happen. I’m expecting a nasty rash, mainly. Post infusion you have to have monthly blood and urine tests for – I’m going to say a year, could be forever though. I think it’s a year. Then there are other possible side effects, but none as scary as PML. (I’m not explaining this, it’s your problem if you haven’t done the reading I set). The key one, I think, is your thyroid might break. That’s not too scary, my mum hasn’t even got a thyroid anymore – it was all cut out of her neck just before she got pregnant with me, or something like that, I wasn’t listening. And that’d be a pain, but it won’t kill you. And that’s generally my main worry, I’m funny like that. So that’s what’s happening. 

I did have summat to say after all! Well done me! It’s been nice, hasn’t it? Catching up for a good old chat? Let’s not leave it so long next time. Awww. Mate. You take care. 

Until next time…