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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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. 

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.