Ten Years Post Diagnosis: Reflections or Fuck. This. Shit.

Apocalypse, Be nice, Chilling on my goddamn superyacht., Death, Dissolving into liquid sky, Fatigue, Feminism, Happiness, I'd like to sit down please, It's not fair, Lemtrada, Life is hard, Medication, MS, Multiple Sclerosis, Vegetarianism, Women

Ten years, then. At diagnosis I was 27nearly28, so the mathematically inclined reader will naturally put two and two together (or add ten which, in this case, makes more sense) to find that I’m now 37nearly38. Rapidly approaching my three-score and ten. Or forty. Ridiculous.

Imagine, if you will, a school reunion scenario – and that Facebook* never existed so everyone doesn’t already know everyone else’s business anyway.

“Ema, hello, please fill me in on the details of your life since last we met.”

“Gladly. I have developed and continue to live with a chronic illness. Plus I would never go to such an event and have no interest in your stupid life.”

Such are the workings of a fully adult mind. Look ye on my sophisticated brain and despair!

Think of a way to link this paragraph to the last! Thanks. Finally gone vegetarian. Pescatarian. Few pesca, many vege. I’m Being Ecological. Read this book, by Timothy Morton. Had to reread each paragraph about three times to give myself a shot at vaguely understanding it. We’re being ecological just by living, breathing and occupying the same space as all the other human and nonhuman beings on this planet, man. Changed my life. Or viewpoint. Or at least something. Another book. Not a good one but one I found helpful. The Unexpected Joy of Being Sober by someone but I can’t remember who. Also mindset altering. Plus, obviously not sober, but drinking less which is better. ‘‘Tis all a work in progress. We must be kind to ourselves. Stop beating yourself up! You are not in Fight Club.

See, being close to a human constructed milestone (Being Forty), has triggered in me a fix-ur-life-up kind of thing. I think it’s about surrendering to the process. What’s the endgame? Where do you (I) want to get to? Ethically, health-wise, fitness and body-wise. Aiming for well-toned-vegan-ethical-nightmare. Although.

Literally, it’s a return to the earth, the dust, the air from whence we came. (Out, out brief candle!) Surrendering to the eventual and inevitable end: a goodbad idea.

We’re not here for long so remember to turn the lights off and don’t make too much mess.

In conclusion. Reflecting on the last ten years through my MS-tinted glasses. It’s a bit shit, really. A more detailed and boring reflection: the Lemtrada‘s working, last few MRIs show No Evidence of Disease Activity (NEDA), I’m mostly exhausted which is awful, I bore myself.

End with a joke. Thank your audience. Vacate the stage quickly. Lights out.

* scandal-hit

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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. 

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.