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?

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…

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. 

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. 

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.  

 

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.