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.  

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. 

  

Dying with Dignit(as)y. 

Anxiety, Assisted Suicide, Death, Dignitas, Dissolving into liquid sky, Life is hard, MS, Multiple Sclerosis, Worry

L and I spent our morning yesterday researching how much it costs to go to Dignitas. 

We’re both alright by the way, don’t want you to worry, we haven’t booked flights (yet), but… It’s been in the news recently – the 70 something woman who was generally fine but just really didn’t want to experience the type of old age that she’d witnessed in her time as a nurse. So off she went. Never to return. I’m  completely empathetic to this point of view. 

When I was at the lowest point of my devastating relapse (previous posts: Losing all the things), in a heap at the bottom of the MS well, despairingly attempting to focus on the ever diminishing sunlight, I thought a lot about dying. About how, if the things I had lost never found their way back to me, I couldn’t envision a life that I’d want to live. Some people could, I get that, but for me there is a point at which I’d give up, throw in the towel, call the whole thing off. The thing that terrifies me most is the loss of my voice. Metaphorically and a bit literally as well. I never never ever want to find myself trapped in a situation where decisions are removed from out of my control. That’s a clumsy sentence, I know. But losing control. No. *shakes head, looks decisive, and cool, good hair!

And this thing, this losing, or getting lost, not having a voice, being spoken for – I couldn’t live if that was caused by MS or illness in old age. 

I’m lucky, at the age of 35, to have four grandparents who are (mostly) fine. Especially the women: they know their own minds. I hope I’m like them. And I hope they live – healthily, happily, well – you know, forever. 

But, in addition to their wellness, they have children, grandchildren who love them. They’re never going to be forgotten, neglected, lonely. And my parents obviously have my brother and me. But there it stops. Is having a child so you’ve basically got a possible future carer okay? Obviously they might not particularly want that, but hey! I will’ve given them the gift of actual life!

Ideally my dream death would be at home, asleep, bed surrounded by weeping disciples who all immediately take their own lives at the point of my death, in solidarity with me, so the room resembles the end of a Shakespearean tragedy, aside from one who can’t join us until she’s written a flattering portrayal of my life and works, various miracles etc, which will, when discovered years after my passing, become a uniting world religion that ends all conflict and suffering. Ideally. 

Basically, I don’t want to have to get on a plane, fly to Switzerland, die in a clinical space that’s so much not home. And I think the anxiety surrounding old age, chronic illness, would dissipate if assisted suicide was legalised in the UK. Feel free to disagree. That’s just where I stand. At the moment.  

 

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…

Here’s looking at you, kid. 

Anxiety, Career, Employment, Happiness, MS, Multiple Sclerosis, Sorry Morrissey, Vegetarianism, Worry

Yesterday, I went into ‘my’ school to drop off ‘my’ laptop, keys, id badge and to collect my stuff, teacher stuff, you know, pencil cases, laminator, mini guillotine thing, from ‘my’ classroom. And that was the end of my career as a teacher.*  

90s callback! Oh Egg…

  

Pardon? Say that again? Well, I can’t make out what you’re saying if you don’t enunciate, boy! Jesus. How do I feel? Er. I dunno. A little defeated, a little melancholy, a little unsure of my place in the world. Out of sorts. Alas, like Icarus I overreached! 

But as C, wise as ever, has told (texted) me: A failed experiment is better than one not tried at all. In the words of Aliyah, another wise woman, I better ‘dust myself off and try again’. 
So. This is an opportunity, I guess, to take a good long look at my life and try to answer that near impossible question, what is it that I actually want? Whilst still earning a sufficient amount to cover the bills/at least some fun stuff obvs. 

Something’s just occurred to me, I don’t know if I’ve mentioned it before? MS is a total and complete kleptomaniacal bastard. 

My plan is then, to stay positive – can we turn that frown upside down! 

An aside: *book recommendation siren* I just finished reading Sapiens: A Brief History of Humankind by Yuval Harari and, in the final chapters, he talks about happiness, about how as individuals we each have a kind of innate happiness setting, like how air-con maintains a specific room temperature, and I think mine is probably about a four, so staying positive? Tricky. D’s however is an annoying seven, so I can’t worry too much about breaking my next decision to him because, he’s a seven! He’ll get back to that pretty quickly. He’s a resilient fellow. So here goes. After eating tonight’s undoubtedly delicious chicken based dinner, I will no longer be consuming meat!** For reasons most people figure out when they’re thirteen. Not thirty-five. Better late than never, eh Morrissey! Morrissey? Come back, Morrissey! 

 
That’s the extent of my plan thus far.***

I’m sure I had more I wanted to share, but the sky has full on clouded over, and my brain has ceased to function. Well, not entirely so you don’t need to call an ambulance or anything. What is it with you taking everything I say so literally? Man. 

See ya. 

*You’re right, I will be doing some supply, but to earn a living, not as a career. 

**We’ll discuss this. 

***There’s a bit more irl. 

Is this madness or am I just tired?

Dissolving into liquid sky, Dreams, Fatigue, Insanity, MS, Multiple Sclerosis, Wasting the day

Feeling this amount of tired all the time is making me feel slightly, on the verge of, insanity. Is it even real or a piece of fiction I’ve cunningly manufactured to manipulate people into doing stuff for me? Or allowing me to live the lazy life I’ve always craved?  

 
I can’t even figure out how I’m feeling right now. 

So. Amantadine: no effect yet. Acupuncture: no effect yet. MitoQ: no effect yet. Spirulina: no effect yet. Etcetera etcetera. 

Have you spotted a pattern? Yes? Well done! Nothing fucking works. I’m immune to wakefulness! I’m being a drama queen! Giving into my tendency for hyperbole! Forgive me. 

Do I need to just accept that I’m one of the three out of four people with MS that are afflicted by fatigue? Maybe. Or, do I need to accept that I am inherently more suited to leisure than useful activity? Such as weeding, for example. 

On days like today, when the sky is clear and blue, and the only sound is a gentle breeze rustling the leaves on the trees, fatigue puts me into an almost dreamlike state. The world seems a little unreal: colours a little brighter; time a little slower; life woozy and liquid. As if I could dissolve right into it.