I believe in Father Christmas

Eeeek! It’s only nearly here.

Feeling a bit festive now, helped by the fact that we’ve just been on a jolly lovely family outing – a steam train trip with Father Christmas.

And while, as adults, we know that the man in the red suit is actually someone’s relative with an itchy stick-on beard, it’s still utterly lovely to get swept up in the palpable excitement of any nearby young person.

I wonder how long we’ve got before our daughter stops believing – she’s a very logical young lady (unlike her mother) who has started to question quite a lot of the practicalities of the whole billions-of-presents-delivered-in-one-night concept.*

That time will inevitably come, but for the moment, it’s still this year and she’s still a firm believer.

And in a frankly frightening, confusing and unfair world, a little bit of belief that people – in red suits or not – can be good and kind is not a bad thing.

Whatever you’re up to this Christmas, whoever you’re with and whatever you believe, have a peaceful one and see you next year.

:: I believe in Father Christmas by Greg Lake

*Frightening how many lies we tell children while drumming into them how important it is to always tell the truth. I’m not sure how much distrust and/or damage we cause, but I’m hoping that ageing and common sense will overcome any feelings of betrayal. Either that, or the Christmas pud sixpences are going to have to pay for some substantial sessions on the couch as an adult.

Comforting sounds

In what I am trying very hard not to make a festive tradition, I spent Saturday in an MRI scanner.

Close to the Big Day as it may be, the 17^th of December was actually pretty good - three years ago I spent an hour-and-a-half on Christmas Eve in one. And while, in comparison to many other medical tests, I quite like an MRI, most people would agree that there are limits to what they will do to get out of the festive shopping.

But the hospital had tried their best – tinsel around the weighing scales and height chart for the pre-scan measurements – and while I turned up prepared with my own CD, I couldn’t resist the option of having the hospital’s choice of festive music piped into the protective headphones.*

First song on was East 17 Stay Another Day which for some reason made me chuckle a lot, until I remembered that the first rule of MRIs is NOT TO MOVE unless you want a stern, disembodied warning voice cutting through the plaintive warblings of Walthamstow’s finest.

It was only a short one this time - just 25 minutes on the gurney with a cage over my face so I didn’t have too long to stay still. Or ponder on the confusing and mildly inappropriate nature of ‘I saw mommy kissing Santa Claus.’

The aim was to get an up-to-date scan of my brain to see what damage is already there before I begin my Tecfidera (which, incidentally, I still don’t have as my MS nurse is still not well.)

The results will form a baseline reference guide to check whether the new drug is working by highlighting any patches of new activity which shouldn’t be there if the drug is doing its stuff. Obviously if I get a relapse which has clear physical impact, I will know about it, but this will also help track and gauge those sneaky instance of damage that indicate silent deterioration.

I’m fascinated by how the varying grey and white patches are interpreted on these scans. I’m also endlessly amazed by how magnets make pictures which make medical meanings.

I do ask my neuro to go through my scans to explain it all and I try to nod knowledgeably while he patiently does so, but as with a lot of things I can understand it for a while before it wafts off into the medisphere and I have to ask him to go through the whole thing again the next time I see him.

I suspect I am not alone in this so I don’t feel too bad. And I can always blame the big white and grey mush he sees on the screen before him.

The only thing I find mildly disappointing about the scan pictures is that my head is not actually sectioned liked the Numskulls with expanded areas for gin drinking, obscure song lyric retention and knowledge of useless trivia.

If I had an MRI scanner that’s what I’d programme it to do. And that would be worth 90 lying still minutes of anyone’s time.

:: Comforting sounds by Mew

*These, by the way, do not block out the repetitive clanking and banging of the magnets, they just dull it a bit. I do know people who drift off to sleep in the scanner – possibly understandable it’s warm, you have to stay still – but I’ve never managed it myself. Perhaps a skill to develop over the next few years as there will inevitably be more close encounters with the tube.

Suspicious minds

We had an away day at work recently.

Sigh.

The very phrase strikes fear. No matter where I've worked, they are the kind of thing that I look forward to with rather less enthusiasm than I reserve for my smear test.

It’s the ‘fun’ activities, the sneaky feeling that everyone else in the room knows a lot more than I do about their jobs, and the having to make slightly awkward small talk with scary-big-boss while simultaneously trying to work out how the flipping hot water dispenser works.

(As an aside, I’m still convinced this ability to get the hot water from the kettle type thing with its inexplicably complicated push button type opening is some sort of ongoing test within our working lives which will one day separate the truly capable from the utterly, utterly hopeless and we will be pay graded on our hot water prowess. Or lack thereof.)

And, with the addition of MS, there is the constant extra struggle to concentrate and contribute without slurring, stumbling or giving the vacant thousand yard stare. Always a good one to bring out at 3pm when scary-big-boss asks you a fundamental question which could determine your entire working future at this organisation.

Anyway, as it happened, it wasn’t bad at all. The fun activities were actually fun and we had the benefit of a truly inspirational speaker, Dave Heeley – or Blind Dave as he is known. Find out about his incredible achievements.

I also had the extra surprise of being given an award for my work. I’ll quickly add that this is not a post to brag. This is a post examining my unexpected reaction to this very pleasant surprise.

This is to wonder why my immediate thought was: “They’ve only given it me because I’m disabled and they feel sorry for me.”

And it’s not just the award. In self-doubting moments, I also wonder if I only got my job because I was helping up some kind of inclusion representation on their employee database.

When did I start becoming so suspicious? Or self-doubting? Is this what 12+ years of MS has done? How much disability prejudice have I internalised without being aware of it?

It’s a dangerous route to go down because it means that I’m not separating the ME from the MS. And yes, I’m aware that – for larger or smaller, depending on the day – MS and I do have some kind of parasitic symbiotic relationship, but I don’t want it to become the relationship that completely defines me.

So I’m trying my best to kick down the nagging voice of doubt and instead accept the recognition on face value. Perhaps it’s not pity, perhaps it’s actually that I’m not really terrible at my job.

Even though I will never work out the secret hot water pay and grading challenge.

:: Suspicious minds by Elvis Presley

Nothing but love

We went to a gig this week!

It deserves the exclamation mark because it’s a rare occurrence these days.

I used to go to quite a few during my university years, and when I worked on the paper we used to be sent free tickets so we could write reviews.

This resulted in some quite unexpected evenings out watching bands that you wouldn’t even pull out of Woollies bargain bin.

My friends are also all frighteningly musical and write and play their own stuff so I’m surrounded by talented people – both amazing and depressing for the tune-free lump that I am.

This week’s gig was with James (the band, not the Bond) and hubby and I went with friends and had a perfectly lovely time.

James were as good as ever and the whole thing was massively, massively uplifting.

The audience was mainly made up of people older than us (always a joy when you hit your 40s) who looked like they were having the time of their lives.

There really is nothing better than looking around at a gig and seeing the entire audience arms aloft, faces smiling, singing as one.

In the emotional armoury of life, music is an extraordinarily powerful weapon.

:: Nothing but love by James

Jump

I’ve been off the Avonex for two weeks now in preparation for my shiny/scary new tablets.

I’ve never really minded the needles or the injecting. I didn’t have too many side effects bar an occasional headache and a few more balance issues than usual the day after.

As a medication, I was okay with it.

Unfortunately however, it was not okay with me and didn’t do the job I needed it to. So it’s farewell to the needle and hello to the tablets.

I had it all planned out nicely, I’d start Tecfidera the week before Christmas on the lower dose then up it the week after the big day festivities.

Yes, I realise that new meds over the most wonderful the of the year is possibly not the best present I could give myself when you factor in the potential side effects and lack of medical availability.

But the cunning thinking in this plan was that I have two weeks off work and would rather suss out the side effects at home than in the office.

So all was well. That is until I called my MS nurse today to check on tablet delivery – and found she’s been off sick for two weeks, will be for the foreseeable and therefore can’t sign my prescription. 

Now obviously, she is allowed to be ill, but argh, so much for best laid plans.

However, there is absolutely nothing I can do about it, so there is no point in getting (as my mother would say) het up about it.

This is a relatively new experience for me, this roll with the punches outlook.

Left to my own devices, I am a planner and worrier. I have plans and back-up plans and just-in-case plans. And a plan B for all of those plans.

But I’ve noticed that increasingly over time I have started to let those tightly gripped reigns go a bit – I don’t know if it’s age or parenting (where very few things go to plan unless you sign up to the Gina Ford school of thinking) or laziness or MS.

I’m very aware that stressing myself out over things I have little control over is neither helpful or productive.

So when it comes to the drugs, I’m just going to have to accept and move on – while enjoying a few more festive tipples than I’d though I might. Always a silver lining.

:: Jump by Van Halen

Footnote: we have one part time MS nurse and one neurologist in the densely populated area in which I live. They are trying to care for thousands of people and it explains why the wait for my annual neurologist’s appointment has now increased to 18months. I’m also aware that I’m lucky to have this level of access and treatment options. However, it is still not enough - but that is a longer post for another time. 

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.

I won't back down

When I left my previous role, my lovely work colleagues presented me with an amazing wordle picture. (Here’s some examples – I didn’t know the proper name when they gave it me.)

They’d collected up all the words they’d use to describe me and popped them all onto A2 and framed it as part of my farewell gift.

And they are 35 lovely, lovely words. Then right down at the bottom of the picture are two others that made me smile: strong-willed and stubborn.*

While I’ve assumed they were describing someone far better than me with the nicer words, sadly there’s no getting round those two.

Because crikey they’re right. But the thing is, I’ve yet to decide if being stubborn is a help or a hindrance.

This was brought into focus last week, this time in my current job, when I was quite clearly not well. My head was on fire, my brain had moved house and my balance had gone so completely I was stumbling around the office like Bambi on absinthe.

So to stop me injuring myself/my colleagues/the office equipment, HR stepped in and gently suggested I might like to think about going home.

This was met with a furrowed brow – although not as furrowed as I would have liked due to head-on-fire situation. 

But it did prove that I’m a bit of a nightmare for employers when it comes to my MS in the workplace – I don’t like giving up. And I don’t like it for a number of reasons:

1. Guilt
2. Deteriorating sickness absence record
3. I know how ill I can be and on that scale, I wasn’t that ill

But eventually common sense prevailed and HR won. As my colleagues chaperoned me down in the lift (ostensibly to make sure I was okay, but actually to make sure I left the building) I fell into three walls and sheepishly apologised for my ridiculous carry-on-until-the-bitter-end-ness.

I accept that I struggle with utter pig-headedness.

From my point of view, it’s what keeps me going. From their point of view, it’s what’s preventing their duty of care.

Plus all the in between messiness of me feeling a burden or making colleagues uncomfortable and them worrying about offending personal pride or accidentally making me feel I’m not wanted.

It’s unlikely to be a dilemma that’s settled soon, if at all. So in the meantime I’m just grateful to be a) working, b) working with people that care and c) not to have broken the printer.

:: I won’t back down by Tom Petty and the Heartbreakers

*I can’t decide if strong-willed is actually just a polite and faux empowering way of saying stubborn. But I think they’re probably both on there to make a point.

Ac-cent-tchu-ate the positive

I had an interesting chat with my MS nurse earlier this year.

I’ve had a few of these, but in this particular one we were discussing upgrading my medication.

Background: It took me 10 years to agree to drugs (although when I was first diagnosed, we were still in the watch-and-wait era) but I finally had such a doozie of a motor relapse just after I started my new job that I agreed to Avonex. Twenty months later and another relapse shows Avonex is not working, so it’s onto either Gilenya or Tecfidera. I have yet to decide which side effects I fancy.

This latest relapse took the bulk of my colour and normal vision in my left eye and, because it’s my eyes, remains my scariest relapse yet. I initially panicked then cried a bit and then bought an eyepatch, carried on working and braced myself to wait and hope for recovery – if ultimately only partial.

I thought I’d done quite well with accepting my situation, until my nurse suggested to me that I might be in denial.

Oh.

Initially I agreed – she’s the expert and would know better than me.

But then I did a bit of proper thinking about that particular relapse, and to be honest, a bit more about MS in general than I usually do. And these are my thoughts – bit jumbled but let’s try:

It’s possible there are bits of me that might still be in denial, even after all this time, but I’m not sure that’s the full picture.

Some of my response is simply wanting to appreciate the moments when I’m ‘well’ - or at least the well I’m at now rather than the well I was pre-MS almost 13 years ago.

Some of it is that I’ve just considered myself to be quite lucky with my relapses and recoveries – recovery has never been 100 per cent, but it’s been enough - so I just try my very best to remain as optimistic as possible while also being very mindful to not take those recoveries for granted.

I think when there has been the degree of recovery I’ve experienced – or maybe it would be better described as the ‘degree of recovery that I am very grateful for’ (perhaps not the same thing as an impressive medical recovery) then I don’t like to dwell too much on what might or might not happen.

And I know that bits of me will never recover but I’ve just got so used to the parts that don’t work that I’m mainly just happy with those that do.

So if this is denial, then I guess I’ll take it.

If it’s acceptance, I’ll take it.

If it’s the power of positive thinking, I’ll take it.

Although that very phrase makes my entire body want to cringe.

:: Ac-cent-tchu-ate the positive by Bing Crosby

Don't let him waste your time

I’ll be honest, I’ve been putting it off forever.

Finding many and varied reasons not to: it’ll be very dull, no-one will be interested, work is frantic, home is frantic, there’s places to go, there’s friends to see, oooh, there’s that thing on the telly, the cats need feeding, I’ve got to help with the homework, the loo needs cleaning (no one says this voluntarily, ever) I need a cup of tea.

But! No more! I now have a large cup of tea, the loo is sparkly fresh and at almost 13 years into this multiple sclerosis malarkey it’s about time I tried to write it down. Surely there’s something of use that I’ve learned since that first unknowing trip to hospital in January 2004.

Erm.

Well yes, there is quite a bit, but the vast landscape of MS means there’s an awful amount I don’t know too. Perhaps because it’s too frightening, because there’s no point in worrying about it until it happens, perhaps because it’s too overwhelming and perhaps because, quite honestly, I’d rather-not-consider-that-aspect-of-it-yet-thank-you (yes, I am looking at you bladder and bowel control, sneaking your icky little faces over the parapet.)

But if I do have any words of wisdom* they are:

• that dealing with MS may take things away from you – physically, mentally and emotionally – but it still leaves you with a choice about how you deal with those losses. And having a choice, even within diminishing parameters, is a massively powerful thing;
• that MS forces you to find out what kind of person you are and to discover that you are stronger than you think – and that’s not a bad thing to find out about yourself;
• that MS helps you, in the nicest sense, sort the wheat from the chaff – your decisions about who to spend your time with, what to spend your time on and the things that really make you happy; and
• that MS can sneak in like a really, really rubbish Milk Tray Man and instead of leaving you some iconic (although possibly slightly squashed) 80s chocolates, may steal your legs, your sight or your speech. But don’t let it take your sense of humour, your faith in yourself or your time.

If there’s anything you think you should be doing then, wherever possible, do it now. It’s taken me almost 13 years to realise that – and there are many things I haven’t done that I regret, but there’s an important lesson there and it’s one I’m now trying to live by.

:: Don’t let him waste your time – by Jarvis Cocker

*I say wisdom, I mean slightly incoherent ramblings that can get a bit passionate. Then I cry.