Little grey cloud. 

Fatigue, Life is hard, MS, Summertime drinking, Wasting the day, Women

Hey you. Yeah, I know. I’m sounding all whiny and dejected, aren’t I? And it’s a beautiful sunny day so what’s my problem, like? Well. It’s hard to be a little grey cloud when the day’s so temperate. 

Let’s go through the circumstances that have led me to feeling so stratusy.  

 
Still off work. Fatigue. I’m so bored of it that I could barely muster the infinitesimal amount of energy required to type those seven letters. Gah. Etcetera. It’s been one of those days where I’ve constantly been doubting myself, questioning myself. Should I be at home? Is being medically signed off justified? Am I faking it, you know, for the extra hours in bed?*

This morning, once I’d dragged my sorry ass outta bed (I’m never using that phrase again, just testing it out, hate it), very half-heartedly semi-yoga-esque stretched, blended up a spirulina/spinach smoothie, drank said smoothie, after ALL OF THAT, I made a list. Oh lists. Where all (some) of the things start. Aside: I went through a phase of giving lists *hilarious* titles, such as ‘the last list didn’t kill me, I’d like to see this one try’ and such. Good times. Anyhow. The whole writing a list business made me feel weepy and oppressed. Damn the patriarchy! (I’m not sure I can hold the patriarchy responsible in this case).  

 
Little wander round my house. Took the stairs two at a time (whilst gripping bannister, obvs). Made myself use my (cheap’n’cheerful) exercise bike. Managed fifteen minutes before I was almost dead from being bored. I find exercise tedious. Someone tell me about an exciting way of exercising? Or make it so it doesn’t matter? And just drinking wine is okay?

That reminds me. This might be why I’m all irritable. Hot weather demands that you sit outside, al fresco, sipping on an alcoholic beverage.  

Me and L, in happy drinking outside times.

Sunshine and supping on a lovely, icy, refreshing G+T/beer/cider is one of life’s most innocent of pleasures. And we can’t even have that, apparently. Because of, like, something to do with your liver or some such nonsense. Hokum. I’m on a self imposed ‘dry’ week/few days. Stupid idea. Disclosure: not an alcoholic. Medication/natural lightweightness means I can only manage a couple of glasses of wine or whatever. But, you know, soft-drinks just don’t cut it on summer days like this. Erk. Pull yourself together, Ema. 

Finishing Naomi Klein’s This Changes Everthing has not helped lighten today’s mindset either. Please do read it. Although I’ve just (always) been entirely inconsequential, the urgency and necessity of doing anything and everything in our power, as citizens, to force our governments to wake up and take action, to do anything and everything in their power, to avert the very worst future scenarios that lay in store for us if runaway climate change is not averted – that sentence has run away with me – basically, it should be all we’re talking about.  

 
My butterfly mind however, directed me to Iplayer where I watched (for the second time), Father John Misty’s Glastonbury performance. He full on nailed it. So in his words: 

But everything is fine / Don’t give in to despair / Cause I love you, honeybear.  

https://m.youtube.com/watch?v=czninCkFfaA 
*Disclaimer. I’m not faking it. 

The world doesn’t revolve around you, Ema. 

Be nice, Fatigue, Hay fever, MS, Sneezes, Tissue

Sometimes I need reminding of this. 

Yes MS is awful. And fatigue fatigue fatigue blah blah boring blah. 

But hay fever’s pretty rubbish too. Especially when there’s a VERY HIGH pollen count, as indicated on the little map I consulted earlier.  

 

Full disclosure: I don’t have hay fever. But D most certainly does. There have been more sneezes than silences this morning. And he is a flurry of tissue and watering eyes. 

And it’s an actual BEAUTIFUL DAY! Alas. 

Note to self: be nice. The world does not revolve around you, Ema. 

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. 

IMG_2435-0

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. 

Fatigue feels like…

Fatigue, It's not fair, Moshing in a sumo-suit on a Tuesday, MS, Multiple Sclerosis

You’re a leaf. You’ve become unstuck and floated down from your tree and already a few humans have trampled on you. From your position on the pavement, with your leafy eyes, you look up and see all of your leafy friends and your leafy family getting on with their leafy lives. It’s not fair.  

A fallen leaf’s view from a pavement. Yesterday.

A child has clumsily made a play-doh representation of the human form. That’s you, that is. 

The worst hangover ever but instead of following the time-honoured tradition of, on waking, swearing never to drink again before, that same evening, pouring a glass of wine, you just continue to feel awful. So you might as well open that bottle.*

As usual, you’ve neglected to check how much petrol you have in your car. (Yes, I know. But I’m both busy and important. Okay?). But you’re already running late and it’s not far. You’re sure that if you concentrate super hard, the fumes will get you there. Fatigue is you running on gas fumes. 


You’re an ineffective damp square of kitchen roll.

Stumbling in a mosh pit. No one notices and no one can hear you ask for help. They’re having a brilliant night! You, however, are being jumped up and down on whilst the gig-goers continue to mosh atop you. Blissfully slash angrily unaware of your predicament.

Like wearing a sumo suit on a Tuesday.

Like my bank account, always.

Like teaching year 11 for three hours after they’ve just finished their maths exam.

Like my cat’s face when you try to move him during a proper fluffy and adorable cat sleep.

Me and the cat just moments before he did an angry face.

Like the white noise between radio stations (pre-digital). 

Like being made to listen to Embrace, forever.

Like curdled milk.

Like a partially rubbed out drawing.

Like when you’re trying to describe to someone a really good dream you had, but you just can’t quite reach the memory of it.

A bit like that really.
*Please drink responsibly. 

Sick and tired(!) of this damn fatigue. 

Fatigue, Life is hard, MS, Multiple Sclerosis

O Fatigue! How do I love thee? Let me count the ways. 

No, that’s the whole thing. There are exactly NO WAYS in which I love it. 

*anguished screamcry*

(How d’ya like that portmanteau word? I coined it to describe how I feel whilst reading The Observer of a Sunday; nothing better than kicking off your day with a bit of righteous anger).

 

Seems that I’m experiencing some full-on fatigue action right now. It’s really bad. I’m permanently exhausted. And it’s not like I’m  doing owt but ‘resting’. I honestly don’t know what to do for the best. Any suggestions forwardslash nifty MShacks would be totes welcome right about now.

I’m eating the right stuff (mainly spinach and kale); doing a bit of exercise on my cheap and cheerful exercise bike, also some improv yoga; dutifully taking my supplements (cod liver oil, vits D and B12, turmeric, flax seeds). I’m retrying Amantadine too after giving up on it before (it made me feel well ill).

Despite feeling perma-awful, I’m worried that I’m actually a total fraud. That I’m making it all up. I’m a skiver. Should I even be off work? I could cope with 26 demanding 13 year olds, couldn’t I? Even though leaving my bedroom to go downstairs, make a cup of chai, is a bit of an ask? I dunno.

Life’s nothing if not hard.

Coming out.

I'd like to sit down please, MS, Multiple Sclerosis, Not in that way

Before we start, it would be crass to compare sharing that you have MS to declaring your sexuality in a world that, in places, is still hostile and where many still face persecution.

Our topic today, as you may have guessed from reading the subject line – well done you! – is coming out as an MS-er. Such fun!

Let’s start from the beginning.
Immediately after diagnosis, I think like a lot of MS-ers, my initial feeling was relief; I’d already figured it out myself so the neuro was just confirming what I already knew. So I had my ‘told-you-so’ moment. Silver-linings…

Breaking the news to family and friends is an odd experience. You’re both the bringer of bad news and the person who comforts them as it sinks in. I remember being quite nonchalant about it: “yeah, it’s MS but, you know, it’s not a big deal – not a real disease like cancer – I’m fine. Let’s talk about you instead.”

It took me far longer than it should to appreciate the seriousness of it. As I’ve said before, MS is a devious bastard and I’m quite stupid. That’s me in the corner, that’s me in the spotlight failing to accept that I’ve got a moron chronic illness. Lousy.
I’m getting off topic. Digressing. Deviating. Straying from the path.

Red Riding Hood, yesterday.

What was I talking about? Oh yes: coming out.

Initially, I avoided telling people. Why would I? I had a sense of shame about it. Like it was just typical of me: You have MS – Oh Ema, what are you like?!

I was embarrassed. I didn’t want to be seen as an ‘ill’ person, a person who was weaker, somehow less than ‘normal’ people. I didn’t want to join the mass of the unwell: the stumblers; the people who walk with sticks; the wheelchair users; the shakers; the people in the street that you look at for far too long; who children ask their parents questions about, in voices that are far too loud to be considered polite. Those people.
Of course I realise now how ridiculous, let alone offensive, that point of view was.

Part of it, I think, is the total lack of knowledge most people have about MS. Why would they know about it? I remember one person that I told, in a professional context no less, saying to me, “isn’t that the ‘yuppie’ disease?” – confusing it with ME, I presume. I wish I’d been more strident in my reply rather than retreating into polite embarrassment. Anyone who knows, really knows, would never, ever say that.

After my ‘devastating’ relapse, I’ve found myself coming-out all over the place. As it were. It’s pretty much become the second thing I tell anyone, after my name.

Realistically, most people don’t need to know. I think I’ve started to leak the information so incontinently because I feel obliged to offer explanation for why I’m walking kind of slowly, why I’ve let someone pass me on the stairs, why I really really need to sit down for a bit.

Aside: I love this record.

A mini-flashback. In a shop with my Mum at the beginning of my long recovery, she overheard me telling the person at the till. Afterward she said to me that it was the first time she could recall hearing me saying “I’ve got MS.” I don’t know what that means. Well, I do. Something about acceptance?

I think I’m finding a balance now, between spurting it out haphazardly to anyone who has the pleasure of stepping into my vicinity and shrinking in opprobrium at the very idea of telling anybody.

So that’s my post about coming-out as an MS-er. You’re welcome. Are those for me? You shouldn’t have! Silly.

More MS-capades soon.