A Weekend In Amsterdam

amsterdamMe and The Teenager headed to Amsterdam last week for the HackAMSterdam event; teams of designers from across Europe coming together to create innovative solutions for common MS problems.

His task was to get me there and back in one piece, my energy and courage for travelling having been somewhat diluted since MS.

Back in the day, I was a fearless traveller, criss-crossing the globe without a care in the world. Nowadays, I print off timetables just to take the bus in to town, which is a bit sad as I have a bus stop right outside my house. Every time I wait there, I remember the time I slept in a bus shelter in the Faroe Islands to save money.

Anyway, our flight left at 6am, so I was up at 3am checking items off my list:

  • feed cat
  • water plants (and talk to them, time permitting)
  • remember phone charger
  • wake Teenager
  • wake Teenager again

What I didn’t bank on was the pesky cat bringing in a live mouse at 3.18am, which threw my whole schedule out, as I chased her – and the mouse – around the cottage in my dressing gown.

Mouse safely deposited back outside, I tried to wake The Teenager. He grunted. Rolled over in bed. Grunted again. All I had to say was, ‘Amsterdam’ and he shot out of bed, grabbed his towel and jumped in the shower (note to self).

At Cardiff Airport, after we had checked ourselves and baggage in, we sat in the cafe. 5am. The Teenager was boggle-eyed and stage -whispered a running commentary:

‘Muuuum. Mum! That man in the weird costume is drinking. Drinking!’

‘Muuuum. Mum! That woman with the willy thing on her head is having another glass of wine! And she’s, like, dancing.’

‘Shhhhhhhhhhh! Stag and hen do parties. Now eat your sandwich and be quiet. It was expensive.’

The flight was great – no sooner were we up in the air than we came back down again. We battled through Amsterdam Airport, The Teenager rolling our shared suitcase like a pro.

While I was at the event, he put his back-pack on and ventured out in to Amsterdam, meeting me back at the venue with a rabid hunger and tales of his experiences around the city – his profound sadness at the Anne Frank museum mingling with excitement as he wandered around the Heineken Experience. He was moved in ways I hadn’t expected – he said he felt privileged that it was people like Anne Frank who kept the legacy of the Holocaust alive. Someone his age, on the cusp of life.

In a moment of utter madness, I asked him, as we had a good few free hours on the Sunday, what he’d like to do together before our late flight back. I had visions of Ye Olde Amsterdam, tulips, clogs. The Teenager had other ideas.

And so it was that I found myself cheering on Ajax Football Club at the Amsterdam Arena during a terrible storm, our suitcase having been left at Amsterdam Central Station. Despite:

  • Knowing nothing about football
  • Freezing to the very end of my toes
  • Not being allowed to read my book

I enjoyed the match. Ajax scored five times so that’s good. We made our way back to the station, picked up our suitcase and took a train to the airport. The Teenager observed, ‘Mum, like, mum, you know, there’s no fat people in Amsterdam.’

‘Why you looking at me?’

‘Jus’ saying.’

Through security, I was gratified when the customs man (very handsome) spoke to me in Dutch and then apologised when he realised I spoke English. ‘You look Dutch’ he said. I said, ‘ner, ner, ner, ner ner’ to The Teenager.

We finally landed back in Cardiff, The Teenager loudly proclaiming ‘I miiiiiiiiiiiissssssss Amsterdam’.

And I did too.

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Please vote For Shift.ms …

shift-ms

An important guest post by George Pepper of shift.ms:

Shift.ms is an online community where people with Multiple Sclerosis can come together to support each other and share practical advice.

A diagnosis of MS often leaves people scared, anxious and isolated. We believe that the best way to combat these feelings is by helping newly diagnosed MSers talk to the people who know best – other MSers. Our community was founded in 2009 and now has over 11,000 members.

We’re currently bidding for funding from the Aviva Community Fund in order to develop an interactive map on our website. The map will help members of our community find other MSers near them so they can meet up, form new friendships and gain invaluable advice and support.

Map.ms will allow MSers to see that they are not alone. An independent evaluation of Shift.ms showed that although members receive a great deal of support online, they would also like to meet face-to-face. We believe that being able to meet up in person will do even more to reduce the mental health problems that so many MSers experience.

Map.ms will allow MSers to quickly find people like them, near where they live, building a deeper sense of community. By plotting the location of Shift.ms members, meet ups and location-specific groups, Map.ms will put the MS community, literally, on the map. Shift.ms takes online safety extremely seriously and has a clear set of guidelines to ensure people do not reveal their home address.

Please vote for Shift.ms in the Aviva Community Fund to help us get the funding we need to build the map. Voting closes on Friday 18th November at midday (GMT), so please take two minutes to follow the link, register, search for “Shift.ms” and cast your ten votes. We think it’s an amazing opportunity for the MS community and we’d really appreciate your help in making it a reality.

Please vote for Shift.ms now.

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What Lies Beneath

hardhatI’m becoming increasingly aware that I’m not really getting away with it at work.

And there was me thinking it would be the dead giveaways – the tripping over every single thing, the fatigue, the balance.

No.

It’s being ‘too well’.

MS, eh?  – you’re never too ill nor too well, eh?

I’ll explain: over the last four years, I have calibrated (shackled) myself to MS – so I now obey MS like a good servant and go to bed early, wake up early (in the dark) and more often than not, fall asleep on my sofa after work. That’s how I deal with the clinical fatigue and nerve pain. And it kills me, I hate it. But …

… luckily, I work for someone, The Boss, who also starts early. Result! Or so you would think. I truck up at 7am, yawning, the first person there, and catch up on a little light University reading. The Boss arrives, we chat over coffee, day begins. I then finish at 2pm.

And that’s the problem.

Honestly, I don’t mind being called ‘Half-Shift’. I can take the jokes, the swearing, the rib-nudging.

As the lone female in amongst upwards of seven blokes, I think I can roll with the punches and to be fair, I’ve developed a thick skin, which can only help me in the dating scene, no? Every cloud.

Plus I can speak knowledgeably upon many subjects, including drainage, tracking down antique architrave and where to source the best windows this side of the M4.

But, because I can hold my own, the shouts of ‘Oyyyyyyy-oyyyy Half-Shiiiiiiiift’ when I leave at 2pm are growing ever louder. And I’m not happy.

What they don’t realise is:

a) I earn less than them

b) Having to lie on the sofa for hours on end is not, NOT, a cushy life

c) I would give anything to have a normal job. One where I didn’t have a pink hard hat

So, yes, my co-workers have a laugh at my expense. And you know, no matter how hard I try to explain, they don’t understand. I’m not saying I want a ‘softly-softly’ approach, far from it. I’m made of far tougher stuff.

But, a wee bit of understanding wouldn’t go amiss? And what they don’t see is:

  • The ridiculous nerve pain
  • The twerking/twitching in my head and arms
  • The dead feet
  • The garbled speech (I cover this well – I’m Glaswegian!)
  • The utter soul-destroying fatigue
  • The endless days I have to take off work to recover from a spike in symptoms

I just wish, for once, they would be chuffed to see a peep with MS, still working, still trucking along. Despite everything. Rock and hard place …

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Can’t Stop The Music …

grumpyI quite liked music before MS came along.

Even during the diagnostic process, I spent countless evenings with the ‘Bridget Jones’ soundtrack up full blast – crying and snivelling into my wine and family-sized bag of Wotsits.

If a song mentioned the word ‘alone’, I played it.

It’s only four years after my diagnosis that I can admit to you guys that Barry Manilow and Gilbert O’Sullivan were on my playlist.

Now, I can’t bear music. I’ve switched permanently to Radio 4 and have grown to love it, although I turn off whenever ‘Desert Island Discs’ comes on, pesky programme. TV dramas are a nightmare as I have to turn the sound down if there’s an emotional scene set to music.

I don’t know why this is – I get that MS can play havoc with your emotions, but music?

So I have a bit of a problem. Working on a building site equals bacon butties, builder’s tea and … music. All. The. Time. There’s a bit of a battle with the radio depending on who’s in first. If it’s the baby-faced labourer, it’ll be Kiss FM. He especially loves ‘Kisstory’ – ‘the best old skool and anthems’, which is sad as the songs are from my youth and I am not that old. Honestly.

If it’s our more mature builder, it’s Smooth Radio, which is particularly painful; sad classic pop song after sad classic pop song. And what’s worse, the builder sings along to every single one of them, and if The Boss is in too, all I hear is, ‘classic song, mate, classic.’

Now it’s That Time Of Year, I live in dread of The Boss taking over the radio. I can never forget two years ago when he subjected me to seven weeks of Smooth Christmas. Christmas songs and only Christmas songs all day long. It was horrific. And traumatic. Incredibly, when I sidled up to the client and said, ‘hey, so sorry about this music, how about I change the channel? There’s a great play on Radio 4?’ she said, ‘oh, I love it! So Christmassy! Don’t change it over.’

Even at home there’s no escape – The Teenager has a deep and enduring love of music. I totally blame myself; I took heed of the so-called baby ‘experts’ and played all sorts of music when I was pregnant, from Chopin to Showoddywaddy, to help his tiny neurons along.

Mind you, sometimes it’s handy as I can gauge his emotions, depending on which music resounds around our tiny house. He’s struggling a little with a huge pile of homework right now, so, perhaps fittingly, his choice last night was ‘Yesterday’ by The Beatles.

If I did listen to music, I’d play ‘I Can’t Stand It’ by Velvet Underground.

Old Skool?

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The One Where I’m Called A Liar …

oh-reallyRegular readers might remember the drama I had in the summer when I was refused a short taxi fare.

A throwaway line in a blog post about The Teenager and a potentially dead cat was picked up by the BBC.

I guess it’s a sad indictment that I’m so inured to being treated shabbily now I have MS that I didn’t make more of a song and dance about it at the time and I will always regret walking away from the taxi line, embarrassed and upset.

Thankfully, Carmarthenshire County Council took up the case, tracked the driver through CCTV cameras and pulled him in  for a chat.

So far so good. The lovely peep at the Council has been keeping me up to date and I fully expected the driver to put his hands up, give some kind of excuse – the economy, stress, a bad day, whatever – and we’d all be on our way, with the him perhaps being a bit more mindful in the future.

So I really wasn’t prepared for the phone-call I received yesterday; The Licensing Committee had met, the driver was there to put his case forward and a statement I had prepared was read out to the fifteen members.

The driver has denied everything.

Apparently I only asked him for directions.

Because of course, that’s what someone with MS would do, after an extremely uncomfortable train journey, searing heat and facing a long trek up a hill with a suitcase to somewhere I had never been before.

The CCTV shows me speaking to him for over a minute – rather long for the directions of ‘up the hill and take a right’. In reality, I had been arguing my case, pulling out my ‘I have MS’ card, paperwork relating to the MS Society Cymru Council meeting I was there for and basically pleading for him to take me to the hotel, a large tip guaranteed.

The Committee will be meeting again in December to hear more evidence and I have now decided to appear in person. If there is one thing I cannot stand above all, it is to be called a liar.

I’ll be driving there.

The case continues …

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