Pseudo-relapses. WTF?

Anxiety, Dissolving into liquid sky, It's not fair, Lemtrada, Life is hard, Medication, MS, Multiple Sclerosis, Pseudorelapse, relapse, Worry

Exactly. WTF is a so-called pseudo-relapse anyway, and WHY?

A pseudo-relapse is a fun bit of MS bantz.

TOTAL LEGEND! What happens is, you have an infection – maybe your classic UTI or, if you’re me, which I am, you have that and, plus, of course, your thyroid gland spends a good few months wildly veering between out of normal range high and out of normal range low before entering insanely hyperbolic death throes after being zapped with radioactivity, and your – in this case my – body reacts by retreating into its comfort zone of distressing malfunction.

It’s a relapse brought on by external factors rather than by your MS kicking off.

My incapacity manifests thusly: right side of my body ceases to function. Walking involves, often, being unable to lift my right leg so therefore dragging it along the floor in a sort of imitation skim-walk (see George Saunders, Lincoln in the Bardo). Right arm hangs uselessly by my side reminiscent of a terrifying zombie, so I am forced to teach D to do ponytails as hair in your face can be well vexing. Instruction involves me frustratedly saying things such as, “what are you actually trying to achieve?”, “in what universe do you expect that to function as a ponytail?”, “I have literally no idea what you are attempting in this endeavour”, and such. Which is pretty much my teaching style as it is.  In addition, fun-times include spending ten minutes on waking trying to solve the puzzle of how to sit up – ‘Ema Weston awoke one morning to find herself transformed into a giant slug.’ Plus my voice is all ridiculous and salivary and slurry. BANTER.

Pseudo-relapses are scary because you don’t immediately know that they’re pseudo.  Inevitably your first thoughts are pure panic. Shitshitshitthetreatmenthasn’t workedIt’shappeningagainMSisgoingtotake meoverI’llbeirretrievablylostthistime nohopenohopenohopenohopenohope…

And then.

You start to believe the medical professionals and you get some steroids (I FUCKING LOVE STEROIDS – although they do give you insomnia which is why I’m writing this at 2:52) and you start to recover pretty quickly I HOPE AND TRUST.

And then you begin to think at least I’m not under rubble in Mexico City, at least I haven’t watched my house blow away in Anguilla, or have no fresh water in Puerto Rico, at least bombs aren’t falling on me in   Syria, at least British-made artillery isn’t maiming my children in Yemen, at least land-mines aren’t killing me as I try to escape to safety from a country that denies my nationhood like the Rohingya in Myanmar, at least I’m not dying in the slums of Mumbai after watching all my possessions wash down the street before disappearing, and Trump and North Korea and Brexit and austerity and AfD in Germany and climate change and refugees still, still,  trying to get here and the officially sanctioned hostile environment that awaits them if they ever do…

Oh dear (see Adam Curtis: Oh Dearism).

And on that, back to bed.


***Dedicated to K, who I miss terribly ***


Additional notes

  • My most recent MRI, done in July of this year, showed No Evidence of Disease Activity (NEDA) which I was obviously over the moon about, which is why this has come as such a horrible surprise. I hope I’m still in the NEDA camp but this may be down to lack of understanding on my part.
  • I sound glib, but it’s the overwhelming hopelessness I feel.
  • I’m an ardent Remainiac.
  • Yes, it is you I mean, K. StokeC is brilliant, but I’d like you to come back please. As well. I’m needy and entitled!
  • Meet me at the Lake Pub.
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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. 

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. 

  

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 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.