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. 

Work and Non-Work: things I forgot. 

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A few things just came to me and I’m annoyed  that I missed them out of my last post. 

Work, your job, is (can be) inextricably bound up with your sense of self. Your identity. 

What do you do? I’m a teacher. A plumber. A communications executive (I can’t remember the exact thing, J)

It’s who you are. How you define yourself to the world. So giving that up, your title, I think, has a psychological effect. 

What do you do? Well, I stumble around the house a bit, then I have a nap.  

 

I’m (mostly) exaggerating. Being negative. But it’s a point I wanted to make. 

Unless I recall anything else, that’s it. 

For now… *ominous music*

Work and Non-Work.

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This is a tricky one. Employment versus Leisure.  

 

No, not like that! The images are but a visual cue. And, also, Leisure, obviously. Kaiser Chiefs are a joke indie landfill band. IMO. 

Obviously not working due to chronic illness is hardly leisure. 

Full disclosure: I’m not at work at the moment after being signed off for [reason:] fatigue. It’s hard though, especially in the current bastard Tory climate. You start to internalise all their ‘striver/skiver’ rhetoric and wonder where you fit in that black/white, diametrically opposing, thoughtless and cruel piece of shizz. I fucking hate IDS.

Your fidgeting suggests to me that you have a question. What’s that? Speak up, don’t be shy. You’re not usually so reticent. My work ‘journey’? Alright, if you insist. Here goes. 

After my diagnosis, I carried on full time teaching for just over two years before reducing my hours to three days a week – far more manageable. I moved to a new place – where I actually worked under D (not like that, idiot). Feeling pretty confident, I was doing 3.5 days a week and, prior to the BIG relapse, had the intention of increasing to four. Ha. 

Post relapse, the school was fantastic – I returned totally at my own pace and, before I left, was up to two and a half days a week. 

Then I got a new job. Teaching full time. And, being in total denial, thought that when I started my MS would kinda go away, become ignorable.  

All the things that still hadn’t fully returned would come back. 

I feel sorry for my newish colleagues – they thought they were employing a sparky, enthusiastic teacher full of ideas; what they got was an exhausted, emotionally wrecked, in denial mess in need of some serious counselling. Sometimes. I was great for the first half term – before the fatigue hit. 

Oh well. The world continues to turn. Aside: in an episode of QI, the question ‘what would happen if the planet stopping spinning?” was posed and, for the next couple of weeks, I lived in  a state of actual terror of that happening. Insane, right? If it did happen I’d be immediately dead, like everyone else. No worries, then.  

Earth continuing to turn, yesterday.

So, I’ve resigned and as of September – will be UNEMPLOYED. Irk. 

I’m hoping all will be okay; D’s a little panicked but, you know, shit generally works itself out. Am I right? 

I’m planning to do supply teaching for a time and I’m sure that will be an immeasurable joy. But seriously.   

But, seriously.

Teaching is a hard job. The constant press negativity ignited by ridiculous proclamations from Gove and now Morgan do not help in the slightest. Nor does incessant government tinkering. If I was entering the profession now,  well, I probably wouldn’t. That’s not to say that I don’t love being in the classroom – that part’s generally great. It’s the other stuff, the increasing demands of planning, marking (especially if you teach English), admin, analysing data, justifying and providing evidence for every last decision you make. It’s so hard. Especially with the added burden of chronic illness. 

*Exhales.*

But I don’t want to give up on having a career. I’ve got ideas about what I’d like to do…patience my dear friend. All will be revealed in the mists of time. Probs. 

For now, I bid you good day.  

 

Crusty bread and baked Camembert. 

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Let’s just take a moment to reflect on the deliciousness of this meal.  

 I could, quite literally, eat only this every day right up to when I die. 

Death by melty cheese. Heaven. 

Except. Except. I’ve been led on to the long and twisty path that is ‘diets that may, not cure, but maybe, sort of cure, MS’. 

None of them are medically proven, by the way, but anything that might help…yeah?

So, there’s a whole multitude of options out there, for your delectation:

  • The Swank diet which limits the amount of fat you can eat; no more than 15g of saturated fat a day, but when it comes to white fish – fill your boots!
  • George Jelinek’s Overcoming MS programme: this is similar to the Swank diet but involves exercise, meditation and vitamin D. 
  • The Best Bet Diet includes 18 different supplements and requires that you cut out dairy, grains and red meat. 
  • The Paleo Diet sounds fun because it means eating like a caveman, which doesn’t, to my disappointment, mean channelling Katniss Everdeen and mastering the bow and arrow. Alas. No, it means eating only the foods that a caveman would have had access to. The idea is that these are the kinds of foods our bodies are best adapted to eating. This includes meats, fish, nuts, vegetables and fruit, but excludes dairy, grains, pulses, potatoes and processed food. Disclosure: I nicked that italicised last bit from the MS Society’s website. I’m sure they wouldn’t mind.  

    Some cavemen, yesterday.

     

I mostly follow the Swank diet but also pick and choose bits from other ones that are out there. In existence. 

What this means is that I’ve cut out dairy and, for the first year, red meat. At home, D and I have a mostly vegan diet. I’ve been following it for well over a year now so can have a limited amount of red meat. I know, I know. I should give up all meat entirely. For both ethical and environmental reasons. I don’t eat it often, but sometimes the temptation of a bloody, juicy, tender steak.. I know. 

At the end of last year I cut out gluten as well. It’s alright. 

But the thought of a silky, pillowy pasta handkerchief in a glossy buttery garlicky sauce. Oh my. Or the aforementioned crusty bread and baked Camembert…

I dunno if any of this is helping but, you know, “Returning were as tedious as go o’er.” (I have a tendency for hyperbole).  

Aside: excited about Fassbender Macbeth.

 
One of the issues I have with all this, is how expensive it is. The ‘free-from’ market appears to be booming but, seriously, the cost man.

A list of my preferred free-froms:

  • Rude Health almond drink: excellent milk substitute, I love it. Far superior to other almond ‘milk’ brands too. Creamy and sweet. Yum. Only stocked by Sainsbury’s though. 
  • Genius triple seeded sandwich bread: not as good as the real thing but definitely adequate. Better than other gluten-free breads out there. 
  • Eat Natural cereals: any of them. Delicious. 
  • Pure Sunflower Spread
  • Nakd Bars: I’m addicted to the Cashew Cookie ones. 
  • Booja-Booja chocolates: a new discovery thanks to my fabulous cousin, G. Seriously good. The champagne truffles? Perfect. 

I’m trying to do more of the day-to-day cooking at the moment; it’s usually D’s ‘job’ – he’s pretty great at it. So last night I made a hugely straightforward pasta sauce. ‘Twas pretty tasty. It’s so simple it’s almost insulting to provide a recipe, but…hey ho. 

An Insultingly Simple but Yummy Pasta Sauce. 

  1. Roast as many tomatoes as you think you may need in olive oil, a dash of balsamic viniger, salt and pepper at around Gas Mark 6 (or whatever the equivalent is) for around half an hour. I used about 15 cherry tomatoes to make enough for two of us. 
  2. Finely slice a garlic clove and add to the tomatoes after they’ve been roasting for around 10-15 minutes. I added some dried thyme as well. 
  3. Boil your pasta! I used some gluten-free penne. 
  4. Whizz up your tomatoes in a blender. 
  5. Pour over your cooked pasta and stir it all in! Add some black olives if that’s your thing. As many as you want. I chopped them in half but, in retrospect, idk why. They would’ve been fine whole. 
  6. A bit more salt’n’pepper (uh, push it!) if you feel like it. 
  7. Et voilà! A tasty weeknight tea!

 Fin. 

Fatigue…for real. 

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It seems apt, appropriate and, dare I say, apposite to blog about fatigue as I’m totally in its downy grips as I, quite literally, type. 

Fatigue, then. What’s that about?

Well, my dearest and most attentive of friends, I shall attempt to answer that most intriguing of questions via the medium we have decided to name ‘blog’.

Fatigue affects around 80% of people with MS. And what it most definitely isn’t, is feeling a ‘bit tired’. And what definitely won’t solve it, is a ‘good nights sleep’.  

 It’s an overwhelming feeling of exhaustion. 

Like you haven’t slept for a week, and then for another week. Like a permanent hangover. Like doing all your normal day-to-day shizz whilst wearing full-on medieval style chain mail. Like wading through treacle (full disclosure: this is pure supposition, irl I’ve not had occasion to do this, or in fact any, of the things in this list – I’ve sure we’ve talked before about your tendency toward the literal).  

Some treacle, yesterday.

Like you’ve turned into a sloth, but everyone’s too polite to mention it and expects you to carry on as normal. Like your brain’s been encased in concrete. Like you’re under the sea, but its not all fun and singing lobsters like Disney claims.  

Fatigue isn’t like this.

Like you’ve been victim to a severe beating but there are no visible signs, no cuts and bruises for you to show off. Like you’re existing a few frames behind everyone else in the movie that is your life.  Like the person typing the text into your speech bubbles is drunk or not paying attention or both. Like you’re wearing eight pairs of gloves and shoes that are several sizes too big for you. Like you’re part of a video conference and the connection keeps breaking down. Like you’re playing a hot game of scrabble but you can’t think of any words and your dictionary’s gone missing. 

Shit, basically. 

Currently, it’s not clear what causes it. The MS Society are funding some research at the moment – feel free to donate!

The only thing you can really do is ‘self-manage’. To construct a lifestyle that enables you to do this. For me, this is in progress. Obviously diet and exercise play a role too. 

So that’s fatigue. Another piece in the jigsaw of my MScapades.  

 



Guest post. 

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Hey man. Let’s try something different. 

I thought it might be interesting to get some of the people that are caught up in the tsunami that is (my) MS to offer their perspectives. So get ready, ladies and gentleman, and put your hands together (and please check your phones are either off or on silent, forgod’ssake) for the first in an occasional series, it’s a… 

 

*polite applause*

This one’s been penned by my lovely mother about the ‘devastating relapse’ I went through a couple of years ago. 

Take it away, Mum!

Hmmm. How do you recall the car crash of the big relapse … Well actually for me in vivid detail like some documentary that was a bit too close for comfort. It started ok. A little tlc, some hugs and a rest and then off she would go. Oh. Well that went well. NOT.

Em and I love each other to bits but I annoy her and she annoys me. We love each other in short doses (sorry Ema). The best thing about a relapse for me was the major amount of bonding time we had together. I could never love her more but I GET HER now. I lived through this with her every step, fall, crawl. Every tear. Lots of highs and a great many lows. 
We lay in bed together, her sobbing, me stroking her hair. Trying to get food down her then giving up and doing fluids. Our beautifully kind MS nurse became my line manager encouraging me, saying I was doing things right, but to be honest I had no idea. 

Showing D what to do when he came back from work. 

Complan, yucky green stuff, milkshake food replacements, straws to drink through. yogurts go down easy, routine. 

D leaves, Em carried or helped to my room, often tears, wash, insert contact lenses (I’m brilliant), hair, rest while I work, A son pops home to carry her downstairs, conservatory, sofa and 6music, mini meals, tears, wheelchair in the sun, anger tears, 5pm into living room – change of scene, podcasts. We talked about everything and nothing.  
Dropping her, sitting on the floor waiting for help. No asking for help now and the swat team of our hospital appeared with perching stools, walking frames, aids for everything and a Spanish physio. She helped me a lot: I was not moving Ema correctly and A brother got told off for carrying her upstairs. He continued and I forgot the instructions and dropped her in the shower.   
Oh and Frankie. Frankie our scruffy little dog .. always with her, herding her to the bathroom then sitting patiently outside in case she fell. Walking in front of the wheelchair and watching her sleep. D came home and we all went off duty and later A and D carried her to bed.  

Ema was my focus everything else revolved around us.  
I lived her nightmare with her and when she was well and she left I broke my heart. But I get her now. We are good together. 
 
Erm. What’s that about ‘short doses’, Mother? S’okay. Forget about it. Jeez. Jokes!

Normal service will be resumed, you know, later. 

Pills, thrills and bellyaches. 

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Hello sunshine! 🔆
Today, let’s shed some light (hahaha – ahem) on medication and all that it involves. Clue: barely any thrills. 

There are two schools of thought, I think, about this. The first is to get MS down on the floor (mat?) when it’s barely had chance to stand up fully. I think I’m grasping for a wrestling metaphor. To get the patient on an aggressive treatment soon after diagnosis. The second, which is what I was offered (and a choice I think I would’ve made for myself, not then understanding the full implications of having the disease), is to start off on a far ‘milder’ treatment and see what course the MS decides to take. 

At first, I started on something called Rebif (three injections a week), then after a couple of years, Copaxone (injection every day – I know). At the time of my ‘devastating relapse’, I’d been off medication entirely for over a year (see one of my previous posts – I don’t know which – I can’t do everything for you, brother).

Post-relapse I had a decision to make. Less aggressive Copaxone or full on MS nemesis Tysabri?  

Some Tysabri, yesterday.

 
Some facts, presented to you as a list:

  • Tysabri works by inhibiting the white blood cells that cause inflammation from going into your brain. – I hope you’re getting this down. There will be a short test. I’ve got it photocopied and ready to go.
  • It can reduce relapses by over 80%. 

Sounds good, right? Almost too good to be true? Yeah, I thought so too. 

Turns out there’s this thing called the JC Virus (John Cunningham, not the other arguably more famous JC, Jesus Christ) – from herein I shall be referring to it as JCV. About 50% of the UK population has it, and that’s fine – it stays in your system for, like, life – chances are you won’t ever even know you’ve got it. However. However. If you’re JCV+ – as opposed to JCV- – it can develop into summat called PML or, rather charmingly, progressive multifocal leukoencephalopathy. Sounds jazzy, right? 

Let’s have a short kitten break.  
 

I needed that. I was parched. Spitting feathers. 🐓 Right. Where was I? Hmmm. Oh. PML. 

PML is a serious infection that can lead to severe disability or death.’

Can I get a whoop whoop?

What this means is that if you’re ‘lucky’ enough to be JCV- you have a 1 in 14,286 chance of developing PML. If, like me, you’re unlucky and JCV+ your chance is 1 in 1,667 with the risk rising to 1 in 192 after two years. 

To quote Joe Gargery, ‘What larks!’

So, as I say: I had a decision to make. 

It was hard. I veered between yes and no, hour by hour. My neuro was completely for me agreeing to it. He did a home visit and everything. Although he does only live round the corner from me, so bear that little nugget of information in mind before you start praising his outstanding dedication to his patients! It was good of him though. 

Here’s me having my first infusion right at the start of my ‘recovery’ (you have one infusion every four weeks – takes about a couple of hours):

And this is my second, with much-improved hair:

 

I’m getting ever closer to the two year mark so it’s time to start summat new; this is already in the pipeline, as it were, so I’ll tell you all about it as and when, perhaps even before. 

So that’s all for today. Thank you for listening so patiently. Appreciate it. 

In time honoured tradition, I bade you farewell with both a wink and a flourish.  

This is what you get when you google image search ‘flourish’. S’okay. It’s young John Cusack!

All the things returning. 

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(My MS nurse says), I’m a success story.  

Any excuse to image search ‘Adam Driver running’.

I’m, hmm, let me think, probably about 97% back to normal. But 97% isn’t good enough, dammit! I want my remaining 3% back! *Throws self on floor, has full-on tantrum – toddler style.*

At the start of my first post-relapse physio, I was given a questionnaire that required me to indicate on an outline drawing of the human body where I’d been affected. (I could make a totally inappropriate comment here, D’ll know, but we don’t know each other well enough yet, so I’ll abstain). Ha! Let me tell you, there were an awful lot of ticks on that image by the time I was through with my biro!

Anyhow. That happened and things continued to improve. 

What’s that? Oh yeah the missing 3%. You want to know about that? Okay. If you’re going to keep on about it. Let’s have another list: 

  • My walking’s still slower than I’d like. I can’t speed up, break into a run, you know, if I sense danger or something. Like a tiger’s escaped from the zoo and I’ve just heard a worrying grunt behind me, coming from the mysterious shade of the trees. Something like that. 
  • Balance and steadiness are a little off. I have to cling to the bannister/wall/D when I walk down any stairs (or steps) so terrified am I of falling down them. 
  • Dexterity isn’t perfect. My pen(wo)manship’s totally taken a hit. 
  • In any alcohol serving venue, people often assume I’m drunk. I’m not.* I have MS. 
  • Fatigue. O fatigue. This meddlesome fella deserves its own post. And indeed, it shall have it. Fatigue is a bit like going about your normal day-to-day shit while wearing heavy chain mail. And on the normal days. Not the medieval battle-reenactment ones.  
  • And a whole host of weird sensory things that I’ve kindly been given to compensate me for what’s not yet been returned! Ah shucks. I don’t know what to say?! 
  • Also, I’m hyper-aware and hyper-vigilant regarding my body, how I’m feeling, any slightly off-sensation  – because I never want THAT (if you’re new, see my previous posts!) to happen again. 

    That’s all (for now), folks! 

    In the next few posts I’ll talk about medication and how that’s working out and I’m sure there’ll be some more of my winning humour to look forward to!
    I guess I should go off and ‘enjoy’ my birthday now. 

    Laters! 

    * Except for when I am. Obviously. 

     

    Birthday Blues.

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    Woke up this morning, recalled the date, pulled the duvet over my head, man this just ain’t right…

    I gots the birthday blues. (She’s got the birthday blues!)

    And so on. 

    Picture me sitting alone at a table, let’s say for eight (or ten). Two people flail around an otherwise deserted dance floor. I blow dejectly on one of those things that apparently (and disappointingly), according to my ‘research’, are called blow-outs. Half deflated balloons bob sadly around me. I pick up my glass. It is empty. 

    Every year, since I was tiny, I’ve always set aside time for a good cry on my birthday. Maybe because I’ve always been aware that I’m that little bit closer to death (cue Seinfeld style laughter track). And because you can’t help but reflect – on what you’ve done, what you haven’t done but should’ve, what you still want to do. The way your life’s turned out. 

    I’m an actual ray of sunshine!

    C’s just sent me this text, I’m pretty sure she won’t mind me sharing it, it illustrates me and birthdays pretty well:  

     

    So. Raise your glass. To Ema! To me! Cheers.   

     

    My beautiful twin cousins are 17 today – they were born on my 18th. So to S & E – you’re beautiful and fantastic people with bright, shiny futures ahead of you!