Metal Mickey

*Hums in irritating fashion* It’s beginning to look a lot like Christmas, everywhere you go.

Or it is if that everywhere is my daughter’s school and you’ve just been to the festive fair. If you did, you’d have seen hubby and me in our nylon nightmare reindeer jumpers looking slightly panicked while manning the bottle tombola.

We like doing the bottle tombola, it’s busy and fun and excellent for spotting (and trying hard not to judge) the people who make one too many return visits.

It’s also really interesting to see what gets donated under the guise of ‘bottle’ – this year we had everything from a large bottle of Famous Grouse to a small one of Peppa Pig bubble bath.

People had been very generous and we had an army of bottles, homemade chutneys, jams and bath stuff lined up in logical regimented rows ordered from lowest number to highest. 

I’d spent the day before with other parents sticking the winning numbers (ends in a 0 or 5 you know) to the winning bottles and folding up endless, endless amounts of losing tickets.

When it came to the pressure of the day, I could cope with the maths (50p a go, 3 for £1) and managed to match almost all the bottles to the correct tickets, but like a washing machine and socks, some went inexplicably astray.

Fortunately we have planned for this and stashed some spares under the table so no one went home disappointed (apart from possibly the person who had a clearly unwanted bottle of Worcester Sauce resplendent with a few month's worth of dust. But that’s the exciting lottery of a tombola.)

So we survived, and hopefully raised lots of cash for the school, but good grief I then genuinely couldn’t think for the entire rest of the day.

One of the most frustrating things I find about MS is its stealth-like ability to whip the cognitive rug from under your feet. Or speech. Or thought processes.

If I’ve overdone it (either physically, emotionally or brainpower-wise) my ability to think or speak coherently utterly deserts me. I feel like the lumbering metal figure of Tik-Tok, Dorothy’s wind-up guardian in the really quite disturbing land of Oz.

When Tik-Tok’s clockwork springs run down, he becomes frozen or mute or, for one memorable moment in The Road to Oz, continues to speak but utters absolute gibberish.

And this was a pretty accurate representation of me after the bottle bonanza – but without any of the joy of having actually drunk any of the alcoholic-based donations.

Tik-Tok is unable to wind himself and can stay mute, immobile and useless for hours, days, months or years on end. How familiar that sounds.

This time, fortunately, an afternoon and evening of rest helped rejuvenate my springs. But as the disease progresses my inner Tik-Tok continues to wind me up.

:: Metal Mickey by Suede

Girl on fire

So I ended my last post with hope and it reminded me of a book I’ve just read.

(Note – I realise I am a 40-year-old woman responsible for a child and not an angst-ridden teenager, but I’m don’t care what you think right, I’m a bit of a fan of young adult fiction. And I’m going to slam the door and stomp off to my bedroom to read it. I didn’t ask to be born.)

In the publishing sensation that is The Hunger Games trilogy, young heroine Katniss lives in a dystopian future and enters an unthinkable fight-to-the-death live action programme framed as light entertainment.

Without giving too much away, she turns out to be quite a symbol of hope for the persecuted masses who start to see her as the figurehead for a long overdue rebellion.

But behind the scenes, the film adaptation shows the head gamesmaker and top politician, the twisted minds running The Hunger Games, having the following telling exchange:

Seneca Crane: “Hope?”

President Snow: “Hope. It is the only thing stronger than fear. A little hope is effective. A lot of hope is dangerous.”

And this, I think, is at the heart of my own fight for balance. Not the physical MS balance, that’s a bit of a losing battle, but the emotional MS balance.

Throughout this whole MS journey* I have always strived to keep hold of hope.

I think this is a positive thing and it has often served as a good pep talk for my ailing body: remember, there’s always hope, remember, there’s always hope.

But I’m also conscious that eventually – in each relapse – there will come a point when there is no room left for hope.

Relapses are a perfect example of how a little hope is effective; keeps me positive, keeps me believing, keeps me going - and a lot of hope is dangerous; what happens when reality bites and I need to face the fact I’ve lost that bit of me for good?

Good question, back to The Hunger Games.

The final sentence of that conversation is: “A spark is fine, as long as it's contained.”

Perhaps that’s an example too – keep a spark of hope, but contain it within realistic boundaries. Keep hoping until you have to stop. And then start hoping you will gain acceptance.

There’s quite a lot to read into these kids’ stories you know.

Out of interest, the tagline of The Hunger Games is: “May the odds be ever in your favour.” Let’s have a little hope that’s the case.

:: Girl on fire by Alicia Keys

*Yack, by the way, to the word journey. I can no longer say it without believing I’m on a celebrity reality show.

Hope of deliverance

Continuing my string of hospital visits - four in 10 days, it’s some kind of personal record – I’ve recently had an eye clinic appointment.

This one was to discuss the optic neuritis damage/recovery from my relapse in January.

I’ve hated this relapse. It’s not like I have ones I love, let’s be honest, but this one has been a truly depressing one.

Eyesight is a particularly terrifying one for me: I’m already quite short-sighted, I have posterior vitreous detachments in both eyes and there’s a family history of glaucoma. The cards do not feel stacked in my favour.

I have also failed to find an eyepatch which at once says cutting edge chic and devil-may-care. Although my lovely work colleague did buy me a red lacy boudoir-esque one which may yet come in useful if I’m ever invited to a certain kind of niche party.

The results of this one showed that in the past 10 months I’ve gone from not even being able to see the board on which the eyechart is mounted, to being able to read the third line from the bottom.

My colour vision doesn’t have quite such happy news though – I couldn’t make out any numbers on the colour blindness chart in January and it’s still a struggle to discern half of them. This I knew as I’m aware my left eye sees the world in watercolour not acrylic, but it’s still a bit sad to have it medically proven by the surprisingly old fashioned flip book.

But I’m going to remain doggedly positive as I still have the potential of two more months of recovery, having been told ON can take up to 12 months to recover, if not longer. I cling to the longer.

What astonishes me though (apart from the body’s ability to recover in the relapsing phase of MS) is the time discrepancy between the damage occurring and the subsequent recovery time.

First relapse: 30 minutes for left hand side to be knocked out, six months for recovery.

Biggest relapse: 40 minutes for speech and all motor control down right hand side to go, 16 months for recovery.

Optic neuritis: 60 minutes for vision to go, 10 months (and counting) for recovery.

I say recovery, it’s actually never been 100 per cent, but it’s been okay and to a level I can live with, but good heavens why must it take so long?

Be patient is a mantra you learn to live by when you have MS. Be patient and keep hope.

So that’s what I’m doing for my eye. I will wait and hope and wait and hope until the time shows that recovery will be incomplete. And then maybe I’ll just wait and hope a bit more.

:: Hope of deliverance by Paul McCartney

I am woman

Four days.

Four days is all it’s taken to go from gp referral to diagnosis to hospital treatment.

Lord knows the NHS has its critics who spell out the many reasons why it’s not perfect, but to me it is a beacon of brilliance.

I was fast tracked. My gp had examined me and looked quite worried - never an emotion you want to see cross a gp’s face – so referred me immediately. I had an appointment yesterday at the one-stop breast care clinic at our local hospital.

To say that the care was professional, reassuring and compassionate is a massive, massive understatement.

I had a mammogram (not as uncomfortable as I feared), ultrasound (sticky) and treatment with a consultant (reassuring) all within two hours.

~ I also was given a bonus lesson in how to tie my hospital robe up properly. Useful as I have an MRI pending and I will not have to do my usual flail around in the changing room and hobble to the tube while grabbing onto the ties and trying very hard not to flash other unsuspecting patients. ~

And it turned out that it was a huge cyst. A great whacking sack of breast fluid created thanks to a) my age and b) my hormones.

It was drained – no anaesthetic needed – within minutes. Yes, it might come back and I’ll need to keep being aware but I was done and okay. And I have never been more grateful.

I’d attended the appointment with my long-suffering hubby who has supported me through my many and varied MS issues. He is utterly brilliant.

But I was also struck by the emotion I felt towards the other women sitting in that waiting room. Women hunched holding hands with partners or compulsively clutching their gowns or staring blankly at the ‘breast check’ posters. All with the big, dark eyes and pale, pinched faces of worry.

Faces that had spent days panicking. Or covering up panic because they can’t worry their partners, or their children, their family or their friends. Or panicking only now because they can’t quite believe they would ever have to be here and now they are and its hit them.

And then there were the women who had no one with them, who had made that frightening journey on their own and who might later be making tear-stained phone calls, walking out alone along the sterile corridors.

As I sat waiting for my results it seemed the only, only thing to do was to hope that all of us got out of there with good news – that this unspoken waiting room solidarity could somehow guard us all.

I have no idea what happened to the other women. I don’t know if my silent hope worked. But for one day our lives touched and I felt an overwhelming surge of protection towards my team; my frightened, waiting women.

:: I am woman by Helen Reddy

Walking on broken glass

Thanks universe.

No really, thanks.

Just to keep my worry cells busy, you’ve given me this.

It’s only four little words, but they mean such a big amount.

“I’ve found a lump.”

And I have, in my breast. I have been fast tracked to hospital and I genuinely don't know how to deal with this.

:: Walking on broken glass by Annie Lennox

You can't always get what you want

I saw my neurologist on Wednesday.

It was the day we woke up to the previously unthinkable news that an orange-faced, insanely-coiffured, intolerant misogynist had been voted into The White House.

And while I leave the political commentating on this almighty mess to people far better qualified than me, I felt it didn’t bode well for the meeting.

But we had the usual chit chat, review of the past few months and those tests that only happen in a neurologist’s office and are, I suspect, designed simply for their amusement.

Nowhere else would you get a person struggling with their balance to be told to close their eyes, put their feet together - and not fall over.

Or with eye damage to put your finger on their finger and touch your nose – without poking yourself in your good eye.

So after the serious medical exam/free comedy sideshow I brought out my list of questions and he went through them all very patiently and calmly.

No, he knows I don’t usually ask this but can’t give an idea of life expectancy and really I need the view of a financial adviser to decide whether to leave my pensions where they are or take them out and go mad on an overseas tour (although possibly not to see our American cousins.)

No, that odd waterfall feeling I have isn’t nerves regenerating but is more likely to be a migraine phenomena (phenomenon? phenomenal? pheremone?) – although part of me is still liking the original explanation so I may hang on to that one.

No, the thing we’re vaguely thinking of doing won’t necessarily be affected by my MS.

Yes, I need to change – and by change, he means upgrade - my medication.

I’ve really, really struggled with this decision. Firstly whether to change, although all the advice and evidence points to the fact I should. And secondly, whether it should be Tecfidera or Gilenya.

In the end – after a few months of research and/or looking for signs from the universe - I’ve gone for Tecfidera – on the basis that it’s almost as effective as Gilenya but doesn’t have quite as many side effects that quite honestly scare me half to death.

So now it’s off the Avonex for four weeks and, assuming my bloods are okay, onto the tablets.

I just need to work out a timetable of when to start – especially as we’re heading towards Christmas and although I’ll be off work for the first tablets and potential side effects, it does run the risk of impacting festivities.

Like the news we woke up to it isn’t necessarily the situation I want to be in, but quite clearly we can’t always get what we want.

:: You can’t always get what you want – The Rolling Stones

Reward

I was on the train to work, half reading something to do with a celebrity I’d never heard of in Metro when I couldn’t help but overhear the phone conversation of the passenger behind me.

He was speaking in that exaggeratedly hushed tone people use on trains. A tone which tries to indicate that you realise it’s annoying to virtually everyone else nearby but you have to take this call as it’s really, really important.

Anyway, I don’t know what the bulk of it was about, but I did hear his report of a trip to the dentist – which was fine, in case you were worried - he needs to go back next August but he didn’t get a sticker.

And this made me smile.

We’re so used to this rewards-based recognition of dental appointments as children, that it’s almost a universally accepted trade-off.

It also remains an irrational but slight disappointment when you don’t get the same sticky well done as an adult.

So, with my annual neurology appointment looming in two days time, I’ve been considering what might be suitable rewards to receive at the end for those of us who are a bit more scrambled.

Obviously new brains and spinal cords, the ability to continually remylienate and genuinely feeling as well as we may look would be ideal.

But in the sad absence of those, here’s my thoughts:

1. A personalised hot water bottle/cool pack, which can be adjusted to suit your personal temperature preferences. And therefore prevent hands/legs/everything packing up on you when the outside environment gets just one degree too warm or too cool.

2. High heels with fancy microchips in the bottom that automatically balance you.

3. This eyepatch 

4. A flashing badge which has a slogan to represent your particular experience on any given day. Choose from: “TODAY I wet myself in public/said stupid stuff in a meeting because my brain won’t work/cried in the kitchen to hide it from my children/fell over outside a pub and had to explain the not-being-drunk thing for the 75^th time/despaired at the benefits system/inwardly crumbled at a thoughtless comment BUT I AM STILL GOING.”

5. A machine which magically allows other people to experience all of your symptoms – both the Boo! Gotcha! Bam out the blue ones and the constant, wearing, dragging ones, both emotional and physical. Admittedly it would only be for a short period (unless they’d really annoyed you), but it may help them to gain some insight into what it is you’re trying to explain.

:: Reward by The Teardrop Explodes

Waterfall

We spent our half term at Butlin’s.

Ooh, it’s technicolour mayhem, but we love it. For my daughter, it’s great, it feels safe and is full-on entertainment with a week of mummy and daddy agreeing to pretty much everything she wants to do.

For my husband it’s great as he gets to eat huge breakfasts every day and see Billy Bear on a regular basis. He’s a big fan of cuddly toys that speak – we have quite a few in the house. As I suspect our daughter starts to become too old to be the excuse for his cast of voice characters, Billy gives him an outlet.*

For me Butlin’s is great as we’ve been a few times so the whole process is massively familiar thereby lessening cog fog worries and if I’m well enough, I can swim at any time I want to.

I’m at my happiest in the water. Alright, I can’t feel the temperature until the water hits my chest, but this is a plus because even the cold local pool feels like Barbados from bra level down.

So we swam every day and did, indeed, have a splashing time.

I even had the energy to go on the slides including the slightly insane Space Bowl which shoots you down an enclosed green tube and into what can best be described as a gigantic goldfish bowl which you circle in an ungainly fashion before being ejected at frighteningly high speed into a plunge pool.

Fortunately, being short sighted, I had to take my glasses off to go on the ride and therefore avoided seeing the faces of the spectators when I pitched half-laughing, half-shrieking sideways into the blue. I was a lycra-clad chlorine triumph.

But it took me the whole four days of swimming pool going to pluck up the courage to go on the Space Bowl.

It wasn’t the inability to see things clearly (myopia + optic neuritis have made me used to that), nor was it the warning signs stating “this ride is not recommended for people with medical conditions.”

It was more the belief that I could still be the person that could do that kind of thing; that I didn’t have to be limited – for the time being at least – by my physical or emotional state.

It was also a nod to my own longed-for signs of recovery, a weird little waterfall feeling in my head.

The first time it happened I was petrified, my entire head felt like cold water was coursing endlessly through it and I was sure another relapse was happening.

I was told once that the feeling signifies nerve pathways coming back to life. I don’t know if this is true, but my head waterfall only tends to happen during recovery so I might continue to believe it.

So cheers to the Space Bowl for making me happy. And cheers to the waterfall, long may it run.

:: Waterfall by The Stone Roses

*Although he has started to refer to Billy Bear as Champagne Billy for reasons best known to himself. It’s entirely possible that in my husband’s head, Billy Bear has a trust fund and plays polo.

The incidentals

Ack. November. Without doubt the worst month of the year. It’s cold, grey, generally exhausting and thoroughly depressing.

November doesn’t have the lovely crisp goldenness of autumn, the tingly excitement of the Christmas countdown, the potential new start of January or the pancakes of February.

It also heralds the danger period for my relapses, all of which have fallen between November and February. 

So, as the traditional gatekeeper to MS crapness, I don’t tend to greet this month with much pleasure and instead try and conserve as much of my rapidly depleting energy as possible.

Therefore, to stave off the bleakness, I’ve made a list of ten things that I could do to cheer me through the month. 

My rule for drawing up the list was any activity must involve minimal effort but bring maximum joy.

1. Hot water bottles. Oh, could there be anything more lovely than strapping a few wobbly hugs of liquid love to your torso with a blanket?

2. Yes! Yes, there could; it’s having a stack of Marmite on toast within easy reaching distance of said hot water/blanket mound.

3. And also a pot of tea.

4. If I have to leave the marmitey cocoon (which actually doesn’t sound all that pleasant when it’s described as such) to go to work then at least I can read books on the train. Hurrah.

5. Putting on high heels.* Yes. Despite my shocking balance, I LOVE the heels. I have loads of pairs from my pre and early-MS days when I could still wear them without wondering where the nearest flower bed was to cushion my fall, but I still love them, the minxy dignity-killers. So I take them out now and again, dust them down and walk around the house in them. Can’t get far, can’t manage the swagger like it used to, but rather than making me sad for what I may have lost, they still fill me with joy for what I can still do – just for slightly more limited periods.

6. Humming to myself. Particularly shoobie-doobie-doo type refrains. And not just in private.

7. Making up songs about poo with my daughter; it’s not sophisticated but it’s very funny.

8. Radio Four Extra. Drama, comedy, comforting marvellousness.

9. Visitors. As long as I can be in pyjamas, they make their own drinks and don’t mind if I stare blankly at them. I’m sorry, blame November, it makes me a rubbish host.

10. Viz. And Bottom. I am a 13-year-old boy.

:: The incidentals by Alisha’s Attic

*In the past I have tried to convince a very dear friend that high heels work much better as a mood lifter than chocolate scoffing and are a far healthier alternative. She was never sold on the idea. However, I like to think she may now wear high heels to eat chocolate and I would class that as a partial success.