Patience of angels

Like many other MSers, I’m often greeted with a cheery “You look well.”

And although I could interpret this patience-testing phrase in different ways*, generally I like to think that it’s coming from a good place and spoken by kind people who really do want me to be well.

And so I smile and brush it off with “Thanks, good make-up” and leave it at that to avoid getting into a long, drawn-out woe-is-me conversation which will just put a damper on everyone’s day.

Because unless you’re with a fellow MSer, discussing symptoms - particularly hidden ones - can be a bit like listening to someone else’s dreams. Very vivid to you, very hard for anyone else to comprehend.

On the whole, it's not something I feel I can be totally honest about, even with friends who have been there throughout the whole process. 

Not entirely sure why - perhaps it's just my damaged state has become so normal I've stopped noticing, perhaps it's just too tedious to go over again or perhaps because actually talking about it makes it a bit too upsettingly real. For everyone.

But maybe Invisible Disabilities Week is the ideal opportunity to share my hidden damage in all its glory. (Plus this is a blog so I can’t see your I’m-sort-of-listening-but-I’m-also-thinking-about-my-dinner face.)

So this is me, looking well.

And when I relapse I look rough as hell and continue to look that way for quite a while.

Oh, hang on...maybe that’s what’s behind the “you look well.” It’s not that I look particularly good, it’s because people just can’t bring themselves to tell me how bad I look the rest of the time.

:: Patience of angels by Eddi Reader

*Including if you look well, you must actually be well and not the clanking bag of bones you claim to be. You have been lying to me and the world at large, making endless excuses for not doing stuff and sucking our sympathy dry. I am not bringing you cake/flowers/gin ever again.

Words

I love words. Just love them.

I did an English degree, I trained as a journalist, I read voraciously. I love language. In moments of stress I love bad language. The more creative, the better.

When I discovered why my body was packing up, I also entered into a brand new world of language. Words like oligoclonal bands, myelin sheath and optic neuritis were both hugely frightening and delightfully musical.

And – in the manner of Carrie Bradshaw – this got me wondering about language and MS.

More specifically, the way people describe the MS community and disabilities in general.

There’s the nicer-sounding words people use while hoping they are saying the right thing. Words like “brave,” “inspirational,” or “warrior.”

They're usually from a good place but can sometimes make me feel like I need to live up to a person I'm just not.

However, they’re a heck of a lot better than “sufferer", "unfortunate” or "invalid." Think about that: literally, not valid.

And, depending on the attitude of the speaker, these are the words that can cause an unintentional drip-drip of damage to your self-esteem or be blatantly slap-in-the-face offensive.

I’ve been lucky, I haven’t been exposed to a lot of language-related nastiness. But there has been one comment that has stuck with me. 

A former colleague once asked me if I was going to have a flu jab. It was autumn time, I heard no warning bells go off, it seemed a perfectly reasonable enquiry. I said I was and received the response: “Oh yes, they give them to your lot don’t they.”

"Your lot." 

Two little words. Just seven small letters implying that I wasn’t with the ‘us,’ that I was somehow different, unusual, exclusive – and not in a good way. 

Not just that, but as if there was some marauding and diseased horde of ‘your lot’ ganging up on the normal, decent, respectable people.

It was a Daily Mail-esque description and made it very clear the damage words can do.

Sometimes poor word choice comes from a lack of understanding, sometimes it's simply a fear of what to say for the best.

But a conscious choice of hurtful words indicates a divisive and dangerous attitude that does nobody any good. After all, if there's one thing we don't need more of, it's division.

So in the way we talk about disability, as well as how we refer to other things in life, we would all do well to mind our language.

:: Words by The BeeGees

These handy guides to inclusive communication have been produced by the Government - it’s almost like they care. 

Silent sigh

We talk a lot don't we?

There's a lot of important stuff, obviously: relationships, family, jobs, money, the divisive doom of Brexit.

There's a lot of light waffle: how we felt about the latest series of Love Island, which phone to upgrade to and why on earth more than one woman would want to sleep with Boris Johnson.*

And in between these two extremes are the placatory soundbites that we use to fill the gaps when we're told something completely overwhelming.

Sometimes it's because silence in this situation is just too painful.

Silence allows the unspoken horrors that we cover with our torrent of words rise to the surface and bubble over.

I've seen two friends this week and experienced two ways in which words fall short.

The first friend had some truly heartbreaking news to share. The kind of news that really cannot be healed by words - not even the most well chosen ones. Anything I said sounded like I was just parroting the lines that should be said in these circumstances.

The second friend, who has never quite got to grips with the whole MS thing,  punctuated my mention of overwhelming tiredness and fear-driven cog fog with a dismissive "Oh, I know how you feel."
Gnfff.

But it made me wonder why we feel that the thing to do in these situations is fill them with words.
Is it to try and make us feel better? Make the other person feel better?
I'm not sure that they do either.

The words we have can be very powerful, but now and again they will simply not be enough. They cannot bridge the chasm that lies between us and the person who is suffering in a situation we just do not know and cannot understand.

Quite often the words are about how we think we should react, about our own panic and our own fears. And that is never, ever going to be helpful.

So instead of talking, perhaps sometimes it might be best if we close our mouths. That we just shut up and listen. And truly pay attention to what we're being told.

:: Silent sigh by Badly Drawn Boy

* Answers on the side of a bus please.

This is hardcore

As they do for so many things, the French have a phrase for it.

And in this case, the phrase is ‘la petite mort’ which quite literally means the little death.

Interestingly, in modern usage it also refers to the sensation of orgasm. But that interpretation is not going to be the subject of this post, I am not late night Channel 4.

Sexual references aside, it can be used when an undesired thing has happened to a person and the experience has affected them so much that "a part of them dies inside.”

And I've been contemplating my own MS-related petite morts recently. It’s been a cheery time.

It’s hard to rank the little deaths because how does, say, loss of speech compare to loss of spontaneity? Or loss of potential stack up against loss of memory? Or loss of sight versus loss of confidence?

Perhaps we need an MS Fight Club to sort it out. (The first rule of MS Fight Club is… oh hang on, I’ll remember it in a minute, it’s in there somewhere.)

Anyway, it’s whiled away a few moments and I’ve decided that I can’t rank them, but I can report them.

• Loss of confidence – a bit of a slow creeper this. When I was diagnosed at 27 I was a journalist, knocking on doors, covering court cases, writing to daily deadlines, getting chased up streets - all the kind of stuff you may imagine, but I was nice with it. Honest. Over the following 13 years, as my cognitive symptoms increased, my confidence has been gradually eroded. Struggling with names, places, words, connections and directions is horribly familiar to people with MS - as is the subsequent questioning of your own capabilities. Most of the time I can't work out which way to turn the front door key and stand stranded on the doorstep, simply marvelling at my competent former self.

• Loss of vision – gah. Three bouts of optic neuritis have left me with damaged sight and colour vision. There are many, many frightening problems in MS, for me visual issues are very near the top.

• Loss of motor control – it all went down my right hand side during a relapse in December 2013 and didn't return for 16 very long months. I couldn’t manage simple tasks without a fight – doing up buttons, writing, chopping veg, plaiting my daughter’s hair, texting or applying eyeliner in any kind of acceptable fashion. Fortunately for my communication needs, there is voice activated text. But, as I discovered during one memorably sweary exchange, it asterisks out the naughty words.
Bl**dy useless when trying to give full vent to the bu***ry bo****ks relapse.

• Loss of direction – not just literally (although I’ve given up being able to take in journey instructions) but employment-wise. I work, but it’s not at a really high level. It's hard to see how working part-time between periods of sick leave will lead to huge responsibility. Bye-bye security, bye-bye potential, hello enforced working life rethink.

So these are some of my MS losses, and as with all deaths, there has to be a grieving process to allow us to survive change. Each relapse brings its own petite morts and its own need for grief. 

We lose, we grieve, we lose, we grieve - in a progressive disease it’s one way street. 

Gain acceptance of the last loss, start grieving the next. 

Again and again and again.

Plus ça change, as the French would say.

:: This is hardcore by Pulp 

The boxer

I’m celebrating Valentine's Day with a faintly embarrassing outpouring of affection, and here it is: I love my body.

There, I’ve said it. I do.

Don’t misunderstand me: I don’t stand in front of the mirror every morning and evening talking outloud to it and affirming its loveliness, I am British for goodness sake.

I’m also not saying it’s picture perfect even in the kindest of subdued lighting. But on the whole, I think it’s great.

And the reason I think it’s great, the reason I don’t hate it despite all the limitations it has or has the potential to have, is this: my body is not letting me down. A disease is letting me down.

In my mind, they are two very, very different things.

I see my body as an increasingly knackered team member that is still managing to turn out for my side.

In the words of those irritating Prescott botherers Chumbawumba, it’s got knocked down, but it gets up again.

Because even if, as the widely held theory suggests, MS is an auto-immune disease and my body is attacking itself, then I still prefer to think it’s simply a bit bewildered rather than just plain mean.

It can’t help the random spasms, it can’t help the skewed temperature sensations, it can’t help the stabbing face pain and it can’t help the thoughts-in-a-spin-cycle.

It is not my body’s fault.

And while it fails and falters, it also tries its very, very hardest to help.

So far, it’s managed to heal claw its way back from a number of pretty hefty relapses. Alright, it may never have been a 100 per cent recovery and alright, it might hold part of the damage back and unleash it again when I’m too tired/too cold/have a virus/sat in a hot bath for too long.

But generally, it’s on my side and it’s fighting very hard to stay there.

However, I am fully aware that this state of affairs is subject to change and at some point, my body is likely to stop healing quite as well as it has done to date.

There’s only a certain amount of times myelin can repair to an acceptable level before the damage really starts to hit and more significant and permanent disability develops. 

So far I have been lucky, I have repaired to a reasonable degree. Even if each relapse has left a lingering mucky footprint on my balance, pain, sensation, cognition or vision.

I don't know how much longer this ability to mostly repair will last. And honestly, it's best not to dwell.

So while it’s sometimes been on the losing side in the skirmishes, while it can’t always make me completely better, I would officially like to thank my body for repeatedly lacing up its gloves and stepping into the ring.

:: The boxer by Simon and Garfunkel

Instinct

When I was a child I wanted Action Man scars.

No, honestly, I really, really did.

I thought they’d make me look cool and brave and stoic in the face of suffering. That they’d make me look interesting with a glamorous air of survival and mystery.

I can’t remember if I thought about actually wanting to have experienced the pain that would have been required to gain them, although I wonder if I might have accepted I couldn’t have one without the other.

As a teenager I remember seeing the now defunct MS Society poster with the ripped out spine and it making quite an impression in a way other health campaigning didn’t.

It might have been because it was around the time I was diagnosed with scoliosis of the spine – a closely named but completely different condition.

During my university years, I was pretty sure something unpleasant was looming for me in my health. It never overtook my life, but it was always a niggling sensation and I'm sure one that is common to tens of thousands of people.

By the end of my first proper job, when I’d really had enough and had started to question what it was I was doing, I came to dread the working day so much that I would wish for an accident or illness that wasn’t fatal, but was serious enough to excuse me for a while.

And then, one very special day, it all really did come true. I got my scars. But they were all internal. Laced with delicate devastation through my brain and spinal cord.

I have a sinking feeling that lurking in my psyche somewhere is a horrible desire to be the centre of medical attention. A sort of misfiring Munchausen which actually resulted in a genuine illness.

So in my darker moments I do wonder if I have brought this state of affairs on myself.

I know rationally this is ludicrous and it’s far more likely to be some as-yet-unresolved combination of genetics + geography + teenage trigger illness + crappy luck, but it does make me think.

But then I also wonder that if I can bring it on myself, can I get rid of it too? What really is the strength of connection between our bodies and our minds? It’s a fascinating subject and has been the topic of much speculation – some utterly bonkers, some giving false hope, some genuine research.

There’s an Institute of Noetic Sciences which explores the role of consciousness and healing and is carrying out research into how the inner wisdom of both patients and health care providers could be combined with scientific and technological advances for the promotion of health and well-being.

Whether or not there’s really anything in this, I think it raises an interesting question: do we always know somewhere deep down if something is amiss? And if we do, then somewhere buried equally as deep, is there the answer to fix it?

:: Instinct by Crowded House

Yummy, yummy, yummy

It was MS nurse appointment day on Monday.

Once we’d got the nice news out the way – she is to become a grandma, I didn’t get lost on the drive over – we got into the Tecfidera review.

As previously mentioned, I have been suspicious of the lack of side effects to date. Thus far they have amounted to a couple of hot flushes and a bit of a runny nose.

When I first picked up the prescription, I was given a factsheet outlining all the potential gastro-intestinal side effects and all the over the counter medication I could have in stock to try and ward them off.

I have yet to experience them and I DO NOT WANT THEM (block capitals in case they’re reading this) but with 4 out of 10 people experiencing them, I am still anticipating. Especially as week three is the peak week (ooh, that rhymes.)

But alongside the medication was the note that Tecfidera needs to be taken with a decent sized meal with good fats as this has been shown to reduce some of the effects.

I may have taken this a bit too much to heart by scarfing down avocado smoothies and peanut butter like there’s no tomorrow.

But if my increased quantity of foodstuff is so far supporting my tum, then it isn’t helping my waistline.

I had the usual weight and blood pressure test before I saw my nurse and found that I’d put on a few pounds – now, I’m not saying this is purely down to the Tecfidera and may well be a hangover from a foodie and boozy Christmas, but it did make me consider that of the many crappy effects of the disease, weight gain is a massively irritating one.

To be fair, the odds are stacked against us– with a variety of medications directly or indirectly causing the pounds to pile on, the decreased mobility which limits the sphere of exercise or the bouts of fatigue which mean lifting an eyelid is as difficult as lifting a barbell.

But, really, if I’m on the Tec for a while (lymphocytes and liver dependant, obviously) then I can’t keep scoffing and for my waistline and my general health will have to start exercising.

With this in mind, I shall be swimming on Friday – how far and for how long I do not know, but it’s a start.

:: Yummy, yummy, yummy by Ohio Express

Interesting aside: we went to the cinema this Sunday then, thanks to Metro vouchers, to the golden-arched temple of unhealthiness for lunch afterwards. Over my munching I heard the dulcet tones of my neurologist who was presiding over a children’s birthday party. We chatted and I felt compelled to tell him that I don’t eat this stuff often. But then I reflected that if it was okay for him then by almost medical decree, it’s okay for me.

Army

I hit thirteen years with MS yesterday.

I know, exciting times.

So in honour of this inauspicious occasion (although an occasion nowhere near as inauspicious as the one happening across The Pond today) I have compiled a little list of things I’ve learned.

1. Eye patches are cool: well, they’re not are they, let’s face it. But they might end up being one of the aids (temporary or otherwise) that will make your life that bit easier. Same goes for all those other medical appliances that I try not to look at in the catalogues, but that one day, when I’ve dealt with my pride, might help me.

2. Advice is helpful, but it really is okay to trust your instincts: By all means seek advice, seek it from medical professionals, fellow MSers, online forum boards, friends and family. But you don’t have to agree with it. If something doesn’t feel right to you, or for where you are at that moment in time, listen to yourself.

3. Humour is a remarkably effective lifejacket: This is so, so important. It’s not that you have to embark on a stand-up tour as soon as you are diagnosed or turn every crappy incident into a gag-filled after-dinner anecdote, but do try and retain your ability to laugh. Multiple sclerosis takes enough off you, don’t let it take this precious weapon.

4. A bit of hope is stronger than a lot of fear: I’ve written quite a lot about hope in this blog and where I stand with it. I maintain that it’s helpful and I’m trying to keep it central as I continue with the Tecfidera.

5. I owe a massive debt of gratitude to my family and friends: obvious, but incredibly, incredibly important. I didn’t know, 13 years ago, quite what the hospital admission was going to mean. I didn’t know it was going to shape my working life, my family plans or continually force subtle shifts in my perspective and personality. But I do know that without my family, my friends, my husband and my daughter I would not have got this far. Thank you all for the phone calls, the desire to understand, the surprise presents in the post, the meals cooked and delivered without me having to ask, the childcare and the pep talks. Thank you for the night-time hugs, the daytime support, the rides to hospital, the cups of tea, the steadying arms, the physio teamwork, the care, the concern and the laughter.

This post is dedicated, with love, to everyone in my army.

:: Army by Ellie Goulding 

Wouldn't it be nice

I've just been to the dentist to have a filling replaced.

Yes, you see, this is why you read this blog, for these glamorous little insights into my life. I've also done a full load of washing and planned the meals for the week.

Anyway, I started the appointment by dutifully updating my dentist on my recent medication change.*

Now bearing in mind I have seen this dentist for a number of years, completed endless medical screening questionnaires provided by the surgery for their records, explained to him a number of times I have MS and taken him through why infections are so potentially dangerous, he still looked blankly at me and asked what I took medication for.

Deep breath.

“I have multiple sclerosis,” I said for quite possibly the 27^th time. Maybe I should make it into a little La La Land-esque show tune, he may remember if there was a charmingly nostalgic song and dance routine attached.

“But you look so (and I waited for it, fully expecting the w-word........) nice.”

Erm, nice? Did he say nice? Not, perhaps, well? I replayed the moment.

No, he definitely said nice.

This stumped me so I mumbled something incoherent about hidden illnesses and sat down in the chair. 

I felt ~ great word alert ~ discombobulated by this pronouncement. I'm pretty sure he didn't mean 'nice' as in attractive as I was wearing far less than the usual amount of makeup that I generally rely on to be classed as passable.

So what was it? Was it an unconscious choice of words that passed some sort of judgement on the kind of people who should get ill?

I wonder just how many people share this bias; that looking – or being - nice should somehow protect us from any unpleasantness in life.

That crappy things are only meant to happen to people who look a bit, well, unpleasant?

Or am I over-thinking it and did he actually mean to say the usual ‘well’ but got a bit flustered at dealing with a disabled person? 

I didn't have much time to ponder it as a few minutes later, patched up, I went downstairs and looked at the bill.

And I can assure you my internal language was anything but nice. AND there was no sticker.

:: Wouldn't it be nice by The Beach Boys 

*Tecfidera update: I'm suspicious. I upped to the full dose yesterday and bar a very minor flush and prickly skin incident, things appear to be oddly quiet. My Tec diary tells me to expect the peak side effects in week 3 though, so I'm trying not to get lulled into a false sense of security.

Mr Brightside

Perspective. Comparisons. Sliding scales.

They’re all interesting phrases when applied to the way you view things – wealth, achievements, career, family, life. Illness.

Like a number of chronic diseases, the perceived seriousness of MS sits on shifting sands depending on who you speak to.

Perhaps you’ve dealt with reactions from people at the oh-it’s-not-so-bad end of the scale. They’ve seen someone being amazing on the Paralympics with it. Or know a friend’s mum who has had it for 25 years and still doesn’t need a walking stick. Perhaps they know someone who works fulltime and goes to the gym every other day?

On the other hand, perhaps they’re at the other end of the scale and they’ve got a pretty bleak outlook for you. Maybe they’ve cared for someone with the primary progressive form? Watched someone deteriorate before their eyes? Seen someone in the end stages of MS?

It’s entirely possible you’ve dealt with these – and many opinions in between – from the medical community.

During the summer I saw a gp I don’t normally see. He asked how I was generally and we had a general chat about MS and recent research.

He concluded by saying it would be good for his newly-diagnosed patients to see me still working and with a family.

“Because really, for you, it’s just an inconvenience,” he finished. With a reassuring smile, believing he’d said the right thing.

And, if I take a deep breath to calm down and think about that proclamation, then to some degree he was right. I’m currently not hugely debilitated. I still work, drive and most of the time I appear to function like everyone else.

To a gp, who is bound to come across far more aggressive cases, he may well believe he could describe my MS as ‘an inconvenience’ and there’s a little bit of me that sort of accepts that.

But to me an inconvenience means a flat tyre or the radiators needing bleeding or running out of teabags.

It does not mean slipping down the workforce ladder because I know I couldn’t manage it or missing most of the things healthy people take for granted or making the painful decision to not extend our family.

None of these things would I describe as ‘an inconvenience.’

So while I do recognise that I am somewhere in the middle of the health-death track bar, I think we would all like recognition of our own personal scales and a bit more consideration of what might actually count as our inconvenience.

:: Mr Brightside by The Killers

We didn't start the fire

Right, the plunge has been taken.

The Tecfidera has been cracked open and begun.

I had intended to start the new stuff over Christmas which, although possibly meaning a miserable festive time while I encountered the cornucopia of potential side effects, would have meant I was away from work.

But, as with many things in life, this was not to be as my MS nurse was off sick (still is actually, which is concerning as I have an appointment soon) and I couldn’t get the prescription signed off.

In the end, galloping to the rescue was my neurologist’s marvellous secretary who pinned down her boss and got him to sign it off. Not an easy task I would imagine.

But thanks to her, I was able to start the first week lower dose pack yesterday.

And while this was the day after a night out for a friend’s 40^th birthday, my thinking ran thus: a) if I’m feeling ropey the day after a few pints, I might as well combine it with any GI side effects and b) you can’t put it off forever.

I was prepared with my fatty, yet reasonably healthy, breakfast foods (avocado and banana smoothies – honestly, MUCH better than it sounds) and two slices of peanut butter on toast and took it.

Four hours after taking it I had a pretty firey flush from ears to chest which lasted for around an hour. Husband and daughter were on hand with a cool flannel and the cats merely stared, somewhat unnerved, as I stripped off clothing.

An hour later and the fire was out and my skin was back to normal. Later on, I was so tired I slept through any side effects of the second dose. I knew I was right to take it on a hangover because the evening-after sleeping was never going to be an issue.*

Today has been okay, mild flush, slightly itchy skin, slightly sore tum – it’s the upping to the double dose next week that I’m not looking forward to.

So far, and who knows what will happen next week with the double whammy, the main thing to deal with has been the twice daily, quite literally in-your-face reminder of disease.

As a once-a-week injectable it’s just something that I did on a Thursday and pretty much forgot about.

But with this, it’s every day, twice a day, a big green tablet with a voice which might as well be screaming “You have MS! You have MS!”

Previously I’ve managed to gag that voice – what side effect its constant repetition will have, I don’t know.

:: We didn’t start the fire by Billy Joel

*Please note: pretty sure this is not a medically recommended way of doing things. Don’t listen to me.

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

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