I believe in Father Christmas

Eeeek! It’s only a week away!

Despite the fact that I'm working up until Christmas Eve, I'm trying to embrace the festive joy and celebrate the magic of Father Christmas.

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

I do wonder how long we’ve got before our daughter stops believing – she’s in her last year of primary school so I fear the worldly-wise sophisticates of secondary school may well put an end to it next Christmas. 

She's also an extremely logical young lady 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 happy, healthy and peaceful one.

:: 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 all those Christmas pud sixpences are going to have to pay for some substantial sessions on the couch as an adult.

Doctorin' the Tardis

I've always been a bit of a geek.

Surround me with Terry Pratchett books, DC Comics or Judge Dredd mega-zines and put me in a Games Workshop and I feel very much at home.

But I have never felt quite so comfortable as during our family trip to Comic Con at the weekend.

We'd taken our Who-mad daughter on an early festive treat to be part of an evening audience with David Tennant and Matt Smith - arguably two of the best Doctors.

We dressed in character, we chuckled at dweeby references and we wished and wished to win a raffle prize that would get us on stage with The Doctor(s).

Sadly wishes weren't enough - and despite the massive temptation we stayed in our seats as I'm pretty sure running wildly through the packed room and launching ourselves at David and Matt would have been very much frowned upon.

But not winning didn't matter. The room was full of geeky-but-proud people doing their geeky-but-proud things and it all made for a lovely evening.

Having spent my younger years worrying about whether or not my interests were cool enough, it was so nice for my daughter to see that it is okay to like what you like.

If only I'd had a Tardis when I was 13 to be able to travel to that evening, it would have saved a lot of unnecessary fretting.

:: Doctorin' the Tardis by The Timelords (KLF)

Trip a little light fantastic

This may seem a faintly ridiculous thing to admit when there are so many bigger things to deal with in the shitshow that is MS; but I miss my heels. 

I really do.

My love affair with elevation was a long time coming - I was only allowed very sensible shoes as a child, I spent my teens in Doc Martens and my uni years in Britpop skirts and trainers.

But when I started my first foray into office wear in my early twenties, I fell head over, er, heels for the siren song of the stiletto.

I loved them all. Gravity defying heels in a huge variety of colours and designs. Row upon row of peep-toes, kitten heels, mules, wedges, court shoes, strappy sandals, ankle boots, calf boots, knee boots. All glorious, all colourful, all massively impractical.

I taught myself to balance on some insanely vertiginous styles. I made myself run on shoes that could topple stilt walkers. No heel was too high.

Then, MS.

The impact wasn't immediate, I still had a few good heel-wearing years left in me. I made it through some nights of non-stop dancing in my favourite spangly styles, I shimmied down the aisle in a pretty impressive pair and carried on pounding the office corridors in my three-inch courts.

But time, along with my MS, has since advanced. I trip over quite frequently and my balance is now too ropey to contemplate more than a few moments in my highest set and not much longer in the lower ones.

It came home to me just how much had changed last week when I managed to spectacularly - and publicly - over-balance in what I had thought were a safe pair of low, block-heeled boots.

It's rubbish. Heels make me happy - they lift not just my body, but my soul. They make me feel confident and elegant and a little bit grown-up.

And they remind me of a time when I didn't have to concentrate really, really hard to be able to wear them. Or, to be honest, do almost everything else.

I can't slip them on any more without wondering where the nearest chair/table/person/flower bed is to cushion my fall.

However, I can't bring myself to get rid of them yet, the minxy dignity-killers, so they sit lined up in my cupboards waiting for a little balance miracle.

Or even the chance to be invited to a sitting-down party. They'd be excellent at that.

:: Trip a little light fantastic by Lin-Manuel Miranda

The Ballad of Barry and Freda (Let's Do It)

I'm very lucky that one of the work projects that I'm currently involved with centres around the history and heritage of a local iconic music venue.

It's involved hours in the archives and a lot of fascinating research around the venue's performers - from poets and dramatists to singers, sports stars and comedians.

One of the many, many acts I came across while gathering information was the glorious and much-missed Victoria Wood.

So in her honour - and to stave off the November chill - here's one of her finest moments. Turn up the volume and dig out the women's mags.

:: The Ballad of Barry and Freda (Let's do it) by Victoria Wood

All the small things

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

November doesn’t have the surprising warmth of early autumn, the tingly excitement of the Christmas countdown, the new start of January or the pancakes of February.

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

So, as the traditional gatekeeper to MS crap-ness, 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 that 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. And when I get home. Hurrah. Current reads: Neil Gaiman, Angela Carter. And Viz.

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 carefully 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. Bottom. I miss you Rik.

:: All the small things by Blink-182

*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.

All together now

Both my husband and I are lucky enough to have jobs that enable us to learn a lot about our local region - it's history, culture and diversity.

Sometimes this allows us to experience very moving opportunities that we may otherwise never have had.

One of these came at the weekend when we were guests at the one-year anniversary of the unveiling of a powerful statue.

The Lions of the Great War statue honours the sacrifices made by South Asian service personnel of all faiths from the Indian subcontinent who fought for Britain in the First World War and subsequent conflicts.

It was created by a local sculptor and funded by members of a local Gurdwara who wanted to remember the men who gave their lives for a country that wasn't their own.

The remembrance service which formed part of the event was extremely moving - giving voice to a community whose part in history had previously not been visible to the wider public.

As a family, we were made to feel extremely welcome, enjoying lunch in the Gurdwara and receiving thanks for the part my hubby played in getting the statue into the public eye.

It was a wonderful event - and the sacrifices of a community we don't often hear about are truly something to reflect upon as we head towards Remembrance Sunday.

Find out more about the statue here.

:: All together now by The Farm

Sympathy for the devil

Way back when I was first diagnosed - almost 16 years ago now - I read a lot about MS research and break-throughs and promising new treatments.

For a newbie, it was all a bit overwhelming and I'd struggle to tell you now which of the things I read about have come to pass, which ran out of funding and which have been consigned to the MS dustbin.

But today being the day it is (Halloween, not potentially-but-actually-not-really-Brexit-Day) I have been thinking about one of those early bits of reading that has stuck in my mind.

This was the strangely charming 2006 study which identified a pair of "angel and devil" genes which fight to make an MS patient healthy or ill.

The research explained that one of the genes thought to be responsible for MS is one called DR2b.
And in a plot twist worthy of the best Hammer horrors (or American soap operas), scientists discovered that this gene is the "evil twin" in a pair of DR2 genes.

Evil, moustache-twirling DR2b exacerbates MS symptoms, but its partner gene - DR2a - heroically tries to dampen them down and counteract DR2b's effects.

At the time, the scientists leading the research stated: "The DR2b gene clearly tells the immune system to go hard into battle against the body's own tissue, so it starts to work in a way that actually damages the person.

"For this reason, natural selection has eliminated the gene on its own, but allowed it to be inherited only when it is accompanied by another gene (DR2a) which tempers its effect."

I have no idea whether research into the angel and devil genes is still going on. The MS Society is funding research into the HLA-DR gene and Vitamin D, but I'm unsure if this is the same gene, or simply a similarly named one.

But I think the study has stuck with me for all this time because of the image it creates. The endless epic battles between a malevolent horned devil and its benevolent haloed companion represent the to-ing and fro-ing of life with MS so well.

And while it's obviously not pleasant to know that I may have a devil lurking within, it's also rather lovely to believe there's an angel looking after me too.

:: Sympathy for the devil by the Rolling Stones

Unbearable

My pie chart of things about MS that without MS have said to me.
Proportioned by irritation levels.

:: Unbearable by The Wonder Stuff

Send in the clowns

((Just been to see Joker - an inventive origin story that references PBA. Made me think of this post.))

Multiple sclerosis brings with it a whole host of entertaining* features.

Not enough danger in your life? Go out in your highest heels with your worst balance.

Want to feel like you’re studying Latin? Read Pot Noodle preparation instructions when you’re fatigued.

Need to experience more art? Wait for your next bout of optic neuritis and see the world like a Monet painting.

But one of the lesser known entertaining* features is that of the pseudobulbar affect or PBA.

This impressively-monikered symptom is also charmingly known as emotional incontinence and can take the form of involuntary crying, wild episodes of laughing or other highly emotional displays.

We might find ourselves weeping at something only moderately sad, laughing uncontrollably at something only vaguely amusing and in both cases being unable to stop ourselves.

Episodes may also be mood-incongruent: we might laugh uncontrollably when angry or frustrated, for example.

And most entertainingly*, sometimes the episodes may switch between emotional states, resulting in us crying uncontrollably when having sex.

Particularly tricky to explain away the first time you sleep with a new partner.

This particularly messy symptom of MS is caused by lesions occurring in the areas of the brain that govern emotional pathways.

It can be upsetting, frustrating and embarrassing and at present is treated through the use of off-label antidepressants.

I don’t think I’ve experienced PBA yet. But to be honest, it’s hard to tell.

I’ve always been a bit emotional, so blubbing buckets at any number of those ‘help the children/animals/earthworms’ adverts is pretty much par-for-the-course for me.

Equally, laughing inappropriately when trying to be stern with my daughter or explain a serious situation is fairly standard behaviour and one that was there before my diagnosis.

Added to which, MS can be a pretty depressing and/or desperately hysterical condition on its own, never mind any sneaky lesions butting in, so how do I know?

It’s a difficult one.

I guess the only way I’m going to be able to tell for sure is if I suddenly start bursting into gales of uncontrollable mirth watching Mrs Brown's Boys.

Then I’ll know it’s definitely time for another MRI.

:: Send in the clowns by Judy Collins

* by which I mean distressing

Sit down

I am currently self-employed and am working for two different organisations - a local authority and a national charity.

The fact that I am lucky enough to still able to work more than 15 years after my MS diagnosis is not lost on me - many of us can't.

I can't pretend it's easy and I can't pretend it doesn't wear me out, but at the moment it is do-able.

I am also lucky in that - to some extent - I am able to pick and choose my own hours and can swap between working in the office and working from home.

But every now and again I need to travel to London for meetings or events for the charity I work for. I've been quite a few times this year and mostly I find it an enjoyable experience.

I live in a small town and the London train leaves us at 7.30am. I generally get back home at 6.30pm. Sometimes I have to change trains between stations (I did last week, engines failed), sometimes not.

The charity I work for is situated three tube lines from the station I arrive at. It takes me a good half hour to get across London.

Last week my meeting took me a total of nine trains to get to London, across London and back from London.

It took endless up and downs of escalators, speed walking to make the meeting on time and a bit of ungainly running to get my pre-booked train back.

Not to mention concentrating and contributing in a meeting with a large number of people I'd not met before. Cognitive panic, obviously.

I find the whole experience of going to London both utterly exhausting and strangely exhilarating.

It makes me proud that I can still do it - but saddened by that fact that I have to then spend the next few days struggling with the impact.

This recent trip has also made me seriously consider getting a Transport for London 'please offer me a seat' badge for the tube because it's very rare that you get a situation like this:

:: Sit down by James

My brave face

Up at a hideous time this morning for a large work meeting in London. Lots of expectations, website data, project milestones and presentations to a number of new people.
This is all a bit unfortunate as I am feeling particularly rough.

Clearly a situation that calls for the careful application of camouflage make-up.
(And maybe a slice of pie.)

:: My brave face by Paul McCartney

You keep it all in

Interesting isn't it, the way other people see you.

After my recent unexpected blurting out of my diagnosis and my conviction that I go on about MS just a bit too much, it appears not everyone thinks the same.

I was having a brief text catch-up with a friend who lives nearby, but who I haven't actually seen that much of in person this year.

I mentioned that I hadn't really felt well since March and they texted back with condolences and the reassurance* that no one would notice. They added that they didn't think I'd want it any other way.

And that surprised me - on two counts.

Firstly - and admittedly I'm speaking as someone who lives in this gradually declining body - I assumed that people would notice.

I do have to stop and sit down (or even lie down) more often than I ever used to before I can face the next part of the day.

I have had to rely on others to drive me around, I've had to turn down invitations from sheer exhaustion and while I have managed to keep working, it's been at quite a cost.

So is it that I've become a real expert in covering up? Is it that the changes aren't always easy for others to notice? Have we all just got too much going on in our own lives?
Or is it - if we're completely honest - that we don't always want to see?

Secondly, is it right that I wouldn't have it any other way?

Is that the impression I give? It may well be.
Or is that the impression that makes it easier for everyone else? It may be that too.
And if it's an impression and not the truth, then who am I lying to most?

It should be no shock to anyone that disabled people are still struggling with other's perceptions of them and I think this is particularly true for chronic, progressive diseases.

We've been one way for a long time and now we are gradually becoming another. We are striving to be the person we always were, but we are battling against something determined to thwart that effort. It's no wonder that we're confused, exhausted and almost continually grieving.

It's very hard to admit to yourself that you can't do what you used to, it's very difficult to explain it to others who have only seen the impression you are used to giving.
And I suspect I project that image because I am frightened of the person I am gradually becoming.

If I honestly think about the way I have managed my 15 years with MS, I don't think my friend was wrong on either of their points.

But I do think it's perhaps time I reconsidered the way I talk about my disease.

:: You keep it all in by The Beautiful South

* Is it a reassurance? And who is it reassuring?

What's going on?

Multiple sclerosis is a disease of questions.

What is happening to my body? Why is it happening? Why is it different for different people? When will I relapse? What will happen to me in the future? Have I done something to cause it? Why isn't there a cure? Can someone make me a cup of tea?

As a former journalist - and all round nosy person - I have asked these questions a lot.* 

And my role as the communications volunteer with our local MS group now allows me to ask the questions on behalf of others too - and share the answers in our quarterly newsletter.

I try and interview someone medically knowledgeable each edition, and autumn was the turn of our neurologist.

Here's one of the Q&As from our conversation. It's very interesting and may (or may not) be reassuring:

Q: What interests and frustrates you most about MS as a condition?

A: There are a large number of puzzling issues about MS which make it a very unusual condition. These include:

* why does it affect people in different ways - some people have a pretty 'benign' course, others have a terrible time

* some people recover extremely well from relapses, so why do others do badly?

* why is it so unpredictable? I have seen some people in their 70s have a relapse after 50 years of stability? 

* why do men and women have a different pattern of MS? 

* how does pregnancy - at a fundamental level - affect MS? 

* when/at what stage is it appropriate to give the most powerful disease modifying therapies? 

* what is going on in "true" progressive MS? 

The frustrations are mainly to do with a lack of resources (funding, facilities and people) to support people with MS, a complicated and pretty unsupportive benefits system and the complicated rules and protocols that have to be followed when considering therapies for MS. The lack of approved treatments for patients with advanced forms of MS is particularly difficult.

:: What's going on? by Marvin Gaye

* especially the last one

I'm coming out

I've lived with MS for so long now that I sometimes forget that everyone else around me doesn't know I have it.

I talk about it, I blog about it, I tweet about it. (I should perhaps sometimes shut up about it.) So surely it's out there enough.

But this week I was reminded that actually not everyone does know.

Despite my May relapse I have carried on working - this is mainly because I am self-employed and have no safety net apart from myself, but also because I picked up a really interesting new project just as the relapse started.

As a purely sensory one, this relapse has been unpleasant but not completely debilitating. I've been tired and very, very uncomfortable, but to look at me, you wouldn't know.

So it was a little odd this week that I found myself suddenly on the office floor and blurting out my situation to relatively new colleagues.

The scene: typing at my laptop (only mis-hitting every fourth key now, the hands are picking up) I decided to do the team round of teas.

Stand up, take one step, fall immediately on floor.

All heads turn.

Try to stand, fail, dramatically fall over again.

My immediate thoughts were - a) oh no, is this the sudden start of something new and horribly MS-ey or b) is it just a shoe issue?

You see I was wearing some new work trousers which were slightly too long. To stop them dragging on the floor and creating a trip hazard, I'd had to dig out an old pair of wedges - with a slightly dodgy heel.

Sitting on the floor with confused colleagues asking me what had happened, I gave them the two potential options and cheerfully mentioned I had a stick in my bag if I needed it.
Not the way I had thought I might out myself.

After the concerned witnesses had got me back on my chair, made me a cup of tea and fetched copious biscuits, I was able to give a bit more of an explanation.

It's become so normal now for me to talk about MS and I've told so many people in so many different ways over the years. But never yet from the floor of a busy office.

I'm not sure if it will get mentioned again, I'm a contractor who's only in one day a week and haven't had chance to get to know everyone very well yet.

But I was boosted by their thoughtful concern, their gentle questions - and the lovely girl who ran for some mounting spray and sellotape in an attempt to fix things.

Because it turns out that this time it was the heel of my wedge that had come adrift and resulted in a twisted ankle - and not multiple sclerosis.

But their quiet and kindly reassurance was good for the sole.*

The offending shoe. With emergency sellotape attached.

:: I'm coming out by Diana Ross

*Bad pun intended.

Mad world

Fingers endlessly tingling, workload keeps increasing and our political system is imploding.

I just want to sit like this. For quite some time.

:: Mad world by Tears for Fears

(Let me be your) Teddy Bear

We're back at Butlin's!

Hurrah for:

• the familiarity that prevents the cog fog
• the catering that helps the fatigue
• the AMAZING new swimming pool that eases pain and stiffness
• the family time 
• Billy Bear

:: (Let me be your) Teddy Bear by Elvis Presley

Wheels on fire

So, where are we on the sensory relapse?

Hug - all gone. Thank fudge.

Wet clothes feeling - mostly gone. Huzzah.

Sandpaper hands - stubbornly remaining. Sigh.

But, as Meatloaf once wisely trilled, two out of three ain't bad, so probably a suitable time to celebrate.

And because I don't like making life easy for myself, I decided to mark the occasion with a bike ride.

Now this may not have seemed wise for a variety of reasons: crap balance, ropey grip, general tiredness, non-MS-related clumsyness.

But I felt the need to do something to recognise the almost-out-the-end of the relapse state, so a bike ride it was.

Off we trooped as a family to a nearby (and mostly flat) country park and saddled up.

My word, what a joy it was. I balanced, I whizzed through puddles, I didn't have to think about anything except peddling and smiling.

The absolute best part was trusting my legs to be able to get me up a (very) small hill and then freewheeling my way down the other side, laughing like a small child.

It was completely exhilarating and made me proud, post relapse, of what my body can do and how my mind has dealt with it.

:: Wheels on fire by Julie Driscoll, Brian Auger and The Trinity

Fix me now

We combined my work trip to London last week with a short family break.

This was ideal as it gave me time to rest and recuperate in a hotel after my meetings while also offering hubby and 10-year-old the chance to explore.

Our daughter loves trips to the capital, she is particularly keen on the underground and the excitement of being somewhere so busy and diverse.

In fact she even declared over dinner on the first night that what she likes the most about London is "all the cultures and languages."

Wise words I think, especially as we're living in a time of such division.

I didn't have to work the day we arrived so we took ourselves off to the Science Museum, it wasn't a place we'd been to before and after spending four-and-a-half fascinated hours there, I really couldn't understand why.

It's an astonishing place and this summer there is a spectacular space-themed exhibition. Should you ever want to know what astronauts eat, what they do to train and where they poop (gigantic space nappies apparently) then this is the place for you.

But just along from the space extravaganza were two other fascinating displays - one looking at the advancement of technology from the 1700s onwards and the other looking at the body, brain and self.

As it happened, I found MS in both of these exhibits. From one of the first MRI machines, a very small and clunky-looking contraption dating from 1983, to the advancements in ways science has started to rebuild and repair nerves.

And from the Science Museum to the science of MS, finding treatments to repair myelin is becoming the holy grail of multiple sclerosis research.

Its importance is explained by Professor Anna Williams in the MS Society's summer edition of research matters:

"Without myelin, the fragile nerve fibres are left exposed and unable to send signals clearly. Our brains have the incredible ability to repair myelin. but with age and repeated attacks, this stops working so well. And as MS progresses, disability accumulates because nerves are permanently lost.

"Research has shown that people who have higher levels of myelin repair see a reduction in the progression of their MS. So if we can repair myelin, we should be able to reduce the number of nerves that people lose, and slow or even stop disability progression."

At present, myelin repair has not been tested on humans but clinical trials are in the process of being designed, organised and funded.

The hope is that myelin repair treatments will become a reality for people with MS over the coming years.

Wouldn't that be great? Wouldn't it be lovely to see a display in the Science Museum in the not too distant future explaining how we discovered ways to repair our damage?

Aberdeen Magnetic Resonance Imager from 1983. Science Museum.

:: Fix me now by Garbage

That's what we can do

I haven't mentioned my work for a little while. I think it's because I've been too taken up with my recent/lingering relapse and all its varying sensory delights.

But as I am (hopefully) coming out the other end of this one - hug has gone, sensation is almost back to what passes for normal for me, I just need my hands to start fully cooperating again - it's time for a work update.

I am currently self-employed and am working on two different projects for two different organisations. They are both very interesting.

It's not been easy carrying on working during the relapse. If I were an employee I would most likely have taken some sick leave, but I work for myself so if I don't work I don't get paid.*

Not ideal for someone with a chronic illness obviously and something I'm going to have to really consider as and when these projects come to an end.

But today I am working. I am travelling down to London for a few days for one organisation, having been at my other one on Monday. The juggling aspect of this appeals to my brain and makes me feel like I'm doing my bit to keep it active and engaged.

But the effort is taken to keep on going during this relapse has been incredible and looking back now, I'm not quite sure how I've managed it.

I think it's because I'm a) ludicrously proud, b) ridiculously stubborn and c) it's my choice - something which is really, really important when living with a disease which can strip you of them.

Work is important to me and I'm lucky that I'm currently in a position with my health where I can still choose to do it. I am aware that this may not always be the case.

I know a number of people with MS who are not currently working and who warn me that I shouldn't I tie my self-esteem up with my job.

They are absolutely right, of course and there have been times over the past few weeks where I have really struggled with what I've chosen to do.

But I've gritted my teeth and - against all reason and good sense - carried on. Because it's my choice and I'm just not ready to choose to stop quite yet.

:: That's what we can do by Deacon Blue

*I could apply for Employment Support Allowance, but the thought of the forms just makes me want to cry.

Freedom!

YESSS!!!!!!!!!!

Nine weeks after it arrived, the majority of my MS hug has finally fucked off.

Fucked off to wherever MS hugs fuck off to.

(Or, more likely, just gone to lurk ominously somewhere until the next time.)

:: Freedom! '90 by George Michael

Sunny afternoon

It's the six-week summer holidays.

Let the complicated jigsaw of work/childcare/clubs/activities/child-swapping with friends/rejuvenating evening gins begin.

And let the absolute exhaustion of co-ordinating all of the above while negotiating the demands of MS hit me like a ton of bricks.

Because while there's no mad-rush-out-the-door for morning registration or finding PE kits (in the cupboard? in the washing machine? on the cat?) or helping with maths homework I JUST NO LONGER UNDERSTAND - there is somehow the requirement to fill the days with fun and exciting stuff.

Days of stimulating summer plans that my daughter will remember for years to come.

Halcyon memories that she can recount to her own offspring while smiling a wistful smile and - perhaps - wiping away a tear of happiness while vowing to recreate them for her own little darlings.

Endless moments of magazine perfection which are out of the grasp of most families, never mind those of us hosting a chronic illness.

It's a summertime struggle to balance the emotional desire to offer every possible opportunity for my daughter while battling the physical demons that stamp all over the reality.

Maybe I should just stop reading articles that showcase frightfully well-turned out families enjoying adventurous outings then picnicking picturesquely. Wearing tasteful outfits and nibbling on superfood salads without spilling the vast majority down their fronts.

Because our six weeks are way more likely to consist of getting too hot and over-tired in the local park, having to have a lie-down after taking on too much, batting stinging things away from sticky juice spillages, cramming in work, a fair few pj-and-tv-and-collapse days, sudden calls for help from friends or family and quite a lot of unhealthy treats "because it's the holidays."

And maybe that's okay.

Maybe it's okay to just cut myself some slack for the summer and view the six weeks as a melting pot of mayhem and exhaustion and last minutes and ice-lollies.

That's not a bad memory for my daughter to have is it? A jumble of fun tied up with some help when we need it.

:: Sunny afternoon by The Kinks

Everything about you

So I appear to have reached that point in the relapse where I find the only sensible option is to take some time out to have a little bit of a grump.

This current state of sad face is caused by:

Seven weeks of not being able to breathe comfortably thanks to the hug. 

Seven weeks of relying on other people to do the driving.

Six weeks of being off balance.

Six weeks of pretending I'm ok to do the new work that I've started.

Four weeks of not being able to write, type, text or - and most importantly - apply eyeliner in any sort of an acceptable fashion.

Four weeks of feeling like I'm wearing damp clothing.

Four weeks of dragging myself through the day.

A few rare occasions of actually asking for help.

And (at some point of) every single day wondering if this will be the relapse that I never recover from.

So I'm allowing myself a small moment of pity and a few toys to be thrown out of the pram.

But I know this emotional downturn won't last for long. Speaking from far too much MS experience, I know it never usually does.

And I also know that whatever damage I am left with I will learn to live with.

So despite this week's choice of song, which is an excellent toy throwing anthem, I know that I don't have it in me either rationally or energywise to waste too much precious emotion on MS.

:: Everything about you by Ugly Kid Joe

Up the junction

Six weeks of the MS hug. Gaaaaaaaaaahhhhhh.

Some things I'd rather deal with:

* gunked-up plug
* dirty rug
* massive slug
* crusty mug
* careless shrug
* anyone smug
* millennium bug

:: Up the junction by Squeeze

Slow hand

Oh my god. The hands. They are driving me crackers.

They are fumbly and numb and useless.

As a result, I am going to use voice activated text to do the rest of this blog post.

I have found this function very useful on my phone, particularly when trying to text.

It doesn't always get things right and there have been a few amusing typos, but at the moment it's absolutely fantastic.

What it doesn't do - which I find frustrating and slightly judgy - is allow me to swear.

For example if I wanted to drop an f-bomb this is what voice activated text gives me: f******.
Despite me yelling f****** loudly and quite clearly.

Turns out, I am being censored by my phone.

This is not very useful, or very accurate, because most of the time during a relapse it's the f-bombs that are most cathartic.

So until such time as my hands work and I can type in said word, it's going to have to be a forging, fudging or forking experience.

:: Slow hand by The Pointer Sisters

Red right hand

Ruddy relapse continueth and for the past couple of weeks my hands have been quite badly affected.

This has happened before and I am hoping against hope that the pathways aren't too damaged to repair to a decent degree.

My hands are both somehow numb AND - when they brush against something (anything) - feel like they are covered in sand.

They are massively uncomfortable - but even more depressing is that the dexterity has gone and they no longer feel under my full control.

I struggle to write, type (thank goodness for autocorrect), cut things, undo things, grab things and hold onto things.

And I don't like it. I don't like it one bit.

Stuff that's hard to do with MS hands:

• type without fcuk-ups
• apply eyeliner successfully
• deal with laces, zips, buttons, hooks
• negotiate tampons without causing a Kill Bill-style bloodbath
• stroke my daughter's hair while she sleeps

Find exercises to help arms and hands from the MS Trust.


:: Red right hand by Nick Cave and the Bad Seeds

Warm wet circles

Ick. Ick. Icky. Ick.

So, the sensory relapse continues and in an exciting change (deterioration) from last week has decided to throw a new sensation into the mix.

Honestly, MS, too kind.

Anyway, this is a new - and unwelcome - one on me - I now feel as if I'm wearing damp clothes. ALL THE TIME.

Good Lord, it's unpleasant.

I know I'm not actually wearing damp clothes, despite the End of Days style deluges we've been getting.

I know this because my daughter keeps checking for me. What with that and the prodding duty she's on to see what feeling has returned (none, thus far) and the hugging to try and over-rule the MS hug (sometimes works), it's been a particularly weird mother-daughter bonding relapse.

What amazes me is the amount of peculiar sensations that our bodies can produce. Who knew we were capable of burning or buzzing or sensing the soggy?

Presumably we could all experience these oddities - it just takes a breezeblock to the central nervous system to release them.

I'm all for expanding my emotional horizons, but there are some feelings that I can live without.

:: Warm wet circles by Marillion

A little time

Well-meaning friend: Feeling any better?

Me: Thanks for asking but no, no I'm not. And it'll be a while before I am.

Well-meaning friend: Oh right, another week or so?

Me: Erm, unfortunately no, it'll be more like another few months.

Well-meaning friend: Oh right. It's just that it's been about a month already. You must feel slightly better.

Me: No. Sorry. (Why am I apologising?)

Well-meaning friend: So you still can't feel your fingers?

Me: No.

Well-meaning friend: Stomach?

Me: No.

Well-meaning friend: Legs?

Me: No.

Well-meaning friend: Oh. Wow. That's pretty unbelievable.

Me: No.

Well-meaning friend: But you don't look any different. I thought I might be able to see something.

Me: Nope. Just me.

Well-meaning friend: Wow. What can I do?

Me: Nothing really, but thanks very much for asking.

Well-meaning friend: Okay, if you're sure. Let me know though.

Me: I will, thanks very much.

Well-meaning friend: No probs. I'll text you in a couple of days, see if you're feeling any better.

Me:

:: A little time by The Beautiful South

(Un)Comfortably numb

So the pins and needles of two weeks ago have transformed into a full-blown sensory relapse. Oh joy.

I have had ongoing sensory issues ever since my first relapse 15 years ago, but not quite to the extent that they are at currently.

They are overwhelming, frightening and, like all invisible MS symptoms, a tricky beast to explain.

I don't look any different on the outside. There's no hazard lights marking out where the problems are. There's no helpful tattoos illustrating where the damage has been done. There's no real adequate way of explaining what's going on because it all sounds so far fetched.

Numbness, pins and needles and intense pressure are about as close as you might get to help non-MSers understand, but they don't really give the full picture.

It's so hard to explain the panic of being able to touch your own body but not feel anything but the cascade of internal pins and needles that pressing on your stomach has released in your fingertips.

Or the girdle-like tightness of the MS hug. A skin-tight corset that you can't remove at the end of the day.

Or the pulled skin sunburn-esque sensation stretching out over fingers and palms.

In addition, as I've been damaged along these pathways before, I don't know how well I can repair again.

But if 15 years with MS has taught me anything, it's to be patient.

It's early days in the relapse, so there's nothing for me to do now but wait and hope that I can get some sense of my body back.


As a reference point, here's a highly scientific diagram of my current status:

The MS Society has produced a useful booklet about pain and unpleasant sensations. You can download it here.

:: Comfortably numb by Pink Floyd

Islands in the stream

At the Needles. With pins and needles. Excellent.

:: Islands in the stream by Kenny Rogers and Dolly Parton 

Needles and pins

I've been to London for a couple of days this week with work.

We've launched a new programme aimed at improving the lives of children and young people who live with parents who drink too much.

One of our keynote speakers was the current shadow health secretary Jonathan Ashworth who spoke very movingly from personal experience. (On reflection, I perhaps should have tried to grab him after his speech to raise the profile of MS.)

It was a successful and emotional event. But very, very tiring.

As a result, I have come home with a horribly familiar sensation - pins and needles.

They're in both my hands and - at the present moment - my right foot. They may spread, they may not. Who can say.

In the scheme of MS symptoms, they're at the lesser end of the scale. But they are still rather unpleasant.

And they remind me very much of my first relapse. Which I am finding unsettling.

Funny isn't it? Fifteen years with MS and I think I've mainly come to terms with it. But when I'm tired and emotional - and tingly - the full weight of this disease hits me.

I carried on this week like anyone else - train travel, tube negotiation, hotel booking, dinner with colleagues, important work event - and it was almost like I was a healthy person.

But what's currently needling me is that I'm not.

I thought I'd got used to re-adjusting my expectations, but it only takes one pin to pop the bubble.

:: Needles and pins by The Searchers

Proud

Who doesn't love a bit of silly comedy?

I know I do. And I've been delighted to be able to introduce my daughter to the absolute joy that is Miranda.

My daughter is 10 so a few of the jokes fly right over her head, but at the vast majority she chuckles and chuckles - it's such a lovely sound.

One of the running gags in Miranda (for those of you who haven't seen it) is the singing of Heather Small's hit 'Proud.'

Miranda and her friend Stevie hold aloft a cardboard cutout of Heather's head and bellow out the lyrics: What have you done today to make you feel proud?

And do you know what, among the prat falls, mild innuendo and knowing winks to camera, it's actually a really important question.

When you have MS, there is a huge list of things you can beat yourself up about: I'm letting my children/partner/family/friends down, I can't do what I used to, I have to rely so much on others, I can't work like I used to, I don't feel like I'm contributing, I don't feel worthwhile, I feel like a failure.

Honestly, it's endless. And it's really damaging. Because that list can become so familiar and so entrenched that we are at risk of believing we are nothing but those negative thoughts.

We are all so much more than a collection of can't dos - we are parents who are trying really hard, we are friends who are emotionally supportive, we are workers who are battling to do a good job, we are children who are caring for our parents, we are people who are just trying to live in the best way we can.

And we do this while dealing with a bloody awful disease. That in itself should be enough to make us feel proud.

But if it isn't, if we need more proof, then perhaps we should consider what we have done today that has made us feel proud.

Had a shower? Proud.
Made that phone call? Proud.
Fed your family? Proud.
Been kind? Proud.
Got through a day with MS knowing you'll have to do the same tomorrow? Proud.

So thank you Miranda - for the chuckles, the clumsiness and helping me find the pride.

:: Proud by Heather Small

Shake it out

I'm reasonably competent. At least, most of the time.

I can function fairly well in company, I can generally navigate the supermarket (even if they INSIST on moving the yoghurts every time I visit) and I can sometimes get a couple of the answers on BBC 2's boffin-fest Only Connect and then feel super smug for the rest of the evening.

But I'm not sure if I'm quite as with-it as I was when I passed my degree, or when my brain worked on super-speed as a reporter filing court copy up against deadline, or if I'm even simply as mentally able as I was a year or so ago.

Because a nosedive in cognitive function is just one of the many distressing aspects of life with MS and a lot of people experience frightening and frustrating impacts on learning and memory, attention, concentration and mental speed, problem solving and word finding.

So, pretty much everything it takes to get through the day.

Issues are, like most things MS-ey, generally caused by inflammation and lesions in the brain interrupting the transmission of electrical messages along nerve fibres, reducing the speed and accuracy of the information.

My word-finding and mental speed are noticeably worse when I'm tired, have been concentrating for long stretches of time, if I'm surrounded by a lot of noise or after being particularly physically active. 

They're also a bit rubbish if I'm particularly emotional - so any complex problem solving in the run-up to my period is an absolute no-go. 

This cognitive carnage is (literally) on my mind at the moment as I have been offered an unexpected work opportunity which I really should take. I'm lucky enough to be freelancing for one organisation at the moment, this is a chance to pick up some work at another.

But what scares me is whether I am still as able as I was 15 years ago before MS introduced its roadblocks in my brain.

Can my beleaguered Numskulls still find their way around the disrupted neural pathways to make me any kind of decent prospect?

I don't know. I can only hope. I have a meeting about it tomorrow. Everything crossed that I don't say anything stupid/inappropriate/clueless/garbled or simply just forget my own name or why I'm there.

* There is some really useful information about cognitive difficulties along with explanations, support and coping strategies in this online resource from the MS Trust

:: Shake it out by Florence + The Machine