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. 

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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.  

 

Miscellany. 

Damn like or damn comment on my damn blog! Thank you., Fatigue, MS, Multiple Sclerosis, Summertime drinking

Yo. It’s Sunday morning, I’ve thrown open my window and can hear the contented twitterings of various garden birds, floating into my bedroom.* The smoky haze clouding the sky has started to be burnt away by an increasingly confident, dare I say cocky, sun. It promises to be a lovely day. That’s what the Met Office weather app says, anyway. Albeit less poetically, and with pictures.   

  
I’m sure, dearest reader, you’ve gathered that I have nothing of significance to impart to you on this fine day. Yep. True dat. So, instead, I might equip you with a list to be going along with. It seems to be the only right and proper thing to do. You onboard, so to speak? Okay. Deep breath. Here goes:

  • Every morning I’m taking a, not ridiculous, but, let’s say, silly number of pills. Regarde: MitoQ x 2 (no idea if they’re having any effect at all, or what exact effect they should be having); Gabapentin x 2 (to be repeated twice more throughout the day, if you’re an MSer it’s 3x900mg – for LOUSY NERVE SPASMS – these work, good); sertraline, for my MOOD; amantadine (for the FATIGUE – don’t appear to be doing cuss-all). I’m not quite rattling yet, but, you know. 
  • Item two on my list. Er. I’m still under the specific weather system a committee has voted, unanimously, to call FATIGUE. 
  • It’s not like I’m completely incapacitated though, before you rush over with magazines and lovingly prepared meals in little goddam Tupperware boxes. More inconvenienced. Thanks, though. 
  • Can I get away with not washing my hair this morning? Because that’s such a tedious life-force sucking activity. And I really can’t be bothered. It’ll be alright, right?
  • Final list item: this is the end of the list. 

Are you still here? Well, can you leave please? Go! I’ve got a day to attack. Or nudge. Clip, at least.  

 

*This isn’t a good sentence. Badly constructed. I mean the sounds, not the actual birds.  Okay?

Possibly Maybe…Perhaps?

Fatigue, I'd like to sit down please, Life is hard, MS, Multiple Sclerosis, Sexy foxes

Hey, man. Let’s talk. I mean, I’ll talk, obviously, and you’ll listen. Because that’s our relationship dynamic, isn’t it?  No need to go rocking the metaphorical boat. Let’s settle into our comfortable groove, tred that well-worn path, commence this post.  

 
Indulge me, if you will, by taking yourself way back in time to Monday. Oh how we laugh at the way things were then: the fashions, the turns of phrase, the hopes and dreams… *wipes tears of mirth from eyes* Are you there? Good. On Monday, dear reader, I was full of the joys of early summer. I had succeeded in successfully shunning Monsieur Fatigue!  


His wiles were not for me. No longer was I separated from the technicolour flurries of life by a gauzy film! I was both human and dancer! I cautiously tweeted my victory! I marked some coursework! Made some gluten and dairy-free brownies! Told my neighbour that I was fine now! Pontificated on which of the anti-fatigue strategems was my best piece of weaponry! A triumphant day indeed. 

O hubris! The downfall of many a story-tale hero. And an equal number of over-confident MSers. Monsieur Fatigue is more artful than I’d given him credit for.  

 Foxier. But not in a sexy way. Damn him!  

 
So, yeah, I’m back to feeling like gravity, in homage to Spinal Tap, has turned itself up to 11. 

Good times! Now get out. 

I can only disappoint you. 

Anxiety, Be nice, Damn like or damn comment on my damn blog! Thank you., Why aren't I Patti Smith?

As the crowd wait expectantly, the mood palpably begins to shift, from one of anxious-excitement to anxious-irritation. She’s almost an hour late, the group seem to think as one; all that anxiety has transformed them into a buzzing hive-mind. Dangerous. 

Then, finally, like the tide coming in, a ripple of silence makes its way from the front row all the way back to those bearded old blokes that are to be found at the back of every gig, ever, engaged in esoteric nodding. 

The lights dim. 

On stage, appearing to have been literally pushed, a single diminutive figure reluctantly makes their way to the mic-stand. 

The audience, as one, hold their breath. 

She speaks thusly: Er, guys – hey there – thanks for coming out to see me tonight – appreciate it – but – erm – the thing, the issue, the nub, is – I haven’t really got anything to say. 

A mumour of confusion, the shifting of feet. 

The thing is, I was pretty proud of my early stuff, but the well’s run dry, man. And, I know, I know, I promised y’all posts about the NHS, Right to die – but really – what have I got to say that hasn’t already been said more coherently, pithily, succinctly by countless others?  

Ema, I love yooooou! Some handsome and intelligent looking fellow shouts. 

Thank you *bashful wink* – What I’m saying to you tonight is, I’m not going anywhere, but you know, try not to expect too much – ’cause – like late 90s band Mansun – I can only disappoint you. 

In a hail of bottles, she exits the stage.  

 

Underachieving. 

Chilling on my goddamn superyacht., Life is hard, MS, Wasting the day

Erm, sorry, what… I’m supposed to write something here? And it should be both amusing and insightful, whilst at the same time hinting at the author’s unimpeachable intellect? Nah, mate, you’ve come to the wrong place. You must’ve taken a wrong turn. Yeah, try the next left. S’okay. No worries. It happens all too often. Alas.

To the point, my friends. If we go there together, we’re sure to make it!

I’m finding it difficult to achieve any-mothercussing-thing at all this week. I’m oppressed! By my own mind and self. Also maybe, slightly, not to worry anyone – *winks* – unhinged. So I thought I’d write a post. Then I will at least have done something.

So, you’re almost certainly not wondering, what my plans, intentions, aims, proposals, for the day that stretches out, somnolently like the most carefree of one-percenters on their goddamn superyacht, before me.

Goddamn superyachts.

Well. Quite unlike the subject of that simile, I have stuff to do.  Domestic necessities must be procured; a trip to the supermarket looks inevitable. A thought: why not walk to a nearer outlet? Thus both eliminating unnecessary carbon output (from my car), exercising my recalcitrant limbs and, thrown in for free, getting some much needed vitamin D (it’s sunny). A plan has formed. Well done me. *faint applause*

There are other missions which I must complete before the day ends but they are all very boring and to share them now may drain me of any energy I have left.

*Puff of smoke. And she’s gone.*

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. 

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.