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

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.  

 

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.  

 

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. 

What’s me and what’s MS?

Epiphanies, Fatigue, Life is hard, More than words, MS, Multiple Sclerosis

I’ve been off work for the past couple of weeks battling extreme – I mean EXTREME – fatigue.  

Early 90s call-back! Hair!


Is ‘battling’ the correct verb? It’s so proactive, confrontational. Would ‘suffering’, ‘enduring’, even plain old, sitting on the fence, no bias here, ‘experiencing’, be better? I think it depends where I am on the self-pity scale. I’m leaning toward ‘enduring’ right now. 

Have I mentioned how awful a symptom fatigue is? Yep, I think maybe I have. No need for sarcasm young lady (or man, if you must)! It doesn’t suit you. 

Enough rambling. We’re here to explore the question: What’s me and what’s MS? So take off those muddy boots, leave them by the door step, come join me on the rug.  

Some ramblers, yesterday.

 
I think I’ve got this on my mind because fatigue’s the kind of symptom that lends itself to this question. 

What I mean is, for example, I’ve never particularly relished the grind of day-to-day, full-time work (I know, who does and what exactly is wrong with them?), but does this mean that my MS perhaps has always been there, lurking in the shadows of my nervous system, biding its time, menacingly rubbing together its creepy little paws, sniggering in the manner of a cartoon villain, sporting a cape and other assorted accoutrements associated with such a character. Chilling. 

My point is thus: Have I found work tiresome because I’ve been suffering from MSfatigue, or is it just that I find work tiresome?

That’s not a good example. 

I think what I’m trying (and pretty much failing) to say, is because of the nature of this cussing mother-cussing disease, because so many of the symptoms, like fatigue, are invisible – other people can’t see them – you see? Which means you have to (over)explain them and, if you’re anything like me, this makes you feel fraudulent. Like a big, fat liar. 

Like you’re making excuses for the person that you are, rather than legitimately providing information about the condition that you’re in no way responsible for having (enduring). 

I think I may just have had an epiphany.  

 

Acceptance. 

MS, Multiple Sclerosis

Acceptance. What do we mean by this? No, no. Hands down. I’m going to give you thirty seconds to write down your own definition. 

(You can take the girl out of teaching… )

Where were we? 

Once upon an unspecified time, in an unspecified place, an unspecified person said to me (#humblebrag siren!), “I think you’re so brave accepting it, I don’t think I could – I’d have to carry on, you know me...”.

No, I didn’t punch her/him. I did, perhaps a little more forcefully than is usual for me, say, “[Name], it’s not really a question of me ‘deciding’ to ‘accept’ it – I’ve been doing all I can to ignore it up till now”. Or something. Then when I got home, after recounting the exchange to D (as part of the usual lengthy monologue he enjoys, and I dare say looks forward to, each day on arrival home after work), I got angry. Then a bit angrier. And now, pretty furious.

Me, an unspecifed day.


Because accepting MS isn’t a choice you make.

Do you ‘accept’ it the first time you regain acceptable balance after a near plummet into a stranger’s path, after extravagantly tripping over an entirely obstacle free section of pavement, and they respond by throwing quite a questionable look in your direction whilst you attempt to style it out? Or do you ignore it until sections of you start to go entirely numb and you can’t feel your partner’s hand on your leg, or anywhere, anymore? What about when one, or both, of your legs stop following the instructions your brain is trying to send to them and you have to use a stick, or a walking-frame, or a wheelchair?

Would she/he still not accept it? Are they an idiot?

Not accepting something that makes every effort, screams and shouts, to get your attention is like not accepting that you’ve turned up to work naked, and that’s why the boss wants a word. “No, I don’t accept that. I do not accept that I’m naked.” Or not accepting that the world’s round. That night follows day. That 2+2=4.

Because – cue rousing music – what I’m here to tell you is – Night’s Watch, are you with me? ACCEPTING IS NOT CAPITULATING!

Always, Jon Snow.

That’s what I should’ve said.

This one’s a bit sad. But still funny. 

Bodies of water, MS, Multiple Sclerosis

This didn’t start off as a blog post, just me writing some stuff down, to get it outta my system. But I thought, wake up grandma, it’s 2015! Who cares about privacy anymore?! We’re all digital witnesses now.


I want to cry because everything’s so bad, but I can’t. Is it the sertraline blocking that specific neural pathway? I know it doesn’t work that way, but that’s how I picture my brain activity. Sadness is there, just around the corner but there’s a big road block and a succession of diversion signs so I can’t get to it. And, usually, that’s (mostly) okay, but this MS, this fatigue, the things I feel I should be able to do but can’t*; I need a good self-pity cry. But maybe it knows what it’s doing; preventing what starts off as a feeling sorry for myself weep becoming a river, an ocean, a fucking tsunami.

*Idk, like some spontaneous, off the cuff, interpretive dance or something. 


I was listening to Elliott Smith when I wrote this. That may provide an explanation.