Tag Archives: multiple sclerosis

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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In My Friend, I Find A Second Self …

friendsTo  have friends is beautiful, magical and life-enhancing.

MS can obliterate that.

I lost a lot of my friends during my MS diagnosis, four years ago.

Whether they couldn’t cope with my new ‘diagnosis-status’, my angst, my late-night texts/phone-calls, I’m not sure. Probably a combination.

My best friend once took a ladder and crawled up the outside of my house and into my bedroom to check I was still breathing, as I lay over-emotional with red wine in my bed. To be fair, I would have done the same for him.  And I have done.

He was the one I called on the day of my diagnosis and we spent the evening lamenting and crying (mostly me) in a cosy gastro-pub. But also building plans for my future. Little did I know that in five months time, I would be unceremoniously sacked from my job. The reason?

MS.

I won the case, but lost immeasurable time with my son due to all the poisonous letters via the lawyer; time I will  never get back, so I used the paltry payout to take us to New York for five days, as a thank-you to The Teenager for all he had to put up with.

And now, now I am ‘living/thriving/succeeding with MS’, where are those friends now?

Luckily, I still have a close circle. I think.

Some have sloughed off along the way, and that’s to be expected. Do I demand more than I can deliver? Perhaps. How many times can I ask for a friend to visit me whilst I am ‘en sofa’?

It’s that boring, I bore myself, honestly.

Twice I’ve asked a dear friend to let me know dates he’s free for a get-together at mine and twice he’s brushed me off. Is my house so dusty? Pesky 300-year old cottages. Or is it deeper than that? Am I … embarrassing?

Twice I’ve asked the friend I’ve known since our kids ran out the classrooms clutching pumpkin masks. Pop in for coffee?

Nada.

I can only presume, on the balance of ‘worth a friend/not worth a friend’, I’ve lost.

I miss those friends.

I’ve had to take six days off work with a dreadful cold/almost-flu-but-not-quite, which weirdly coincided with The Teenager being away on a school trip. And really, it was all for the best. I schlepped around, lay on the sofa, felt sorry for myself and argued with the cat.

But I sure missed my friends …

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Simply The Boss …

mugJust when I think my life is bad, The Boss proves me completely wrong.

Not only is he juggling three jobs at the moment, he is also without a van, his phone and his hair.

I’ll explain:

A few weeks ago he was in a crash at a notorious roundabout. Luckily no one was badly hurt and it wasn’t his fault (it was an 84-year old, on his way to his birthday party, poor thing).

Sadly, his beautifully sign-written van (designed by moi) is a write-off and was sent to the Crusher Yard last week – a day of sad reflection for us all.

So he hired an interim van after much grumbling about lack of shelf space and roof rack. Last week he had to sort out the plasterer at one of the jobs, left his phone on the dashboard for a minute (d’oh) and came back to find the van broken into, the phone gone and half his tools as well.

As if that wasn’t bad enough, after sporting a Donald Trump-esque haircut for a while, he went to a new hairdressers and came out with a razor-thin cut, looking like someone I saw recently on Crimewatch.

And finally, to top it all, he’s had to put up with me going through an MS floaty-exacerbation-of-symptoms.

I worry about him.

At work today, I tripped over countless times. I took ten minutes to doze in the corner. All the while, he was on my phone, sorting out a new van, chasing up his new phone and working out which tools have been taken. He collects them as a hobby so this in itself was a monumental task.

Anyway, as I was packing up to leave, he said he’d worked out a plan for the week and ran through it for me. I gently reminded him I was having a blood test on Wednesday and seeing my neurologist on Friday, so wouldn’t be in work those days.

I left pretty sharpish.

As I got in my car, The Teenager sent me a text, ‘Sixth form party tonight, can you iron my jeans? Can I have some money?’

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The People You Love …

ghostsThe Teenager went to Manchester at the weekend to visit a close relative who is severely ill with Parkinson’s and now living in a nursing home.

I picked him up from the train station yesterday evening and could clearly see the slump in his shoulders, his troubled face.

On the drive home, we chatted about this and that but he was mostly occupied with his phone and glugging back the drink I had brought with me.

Until, ‘Mum? Can I ask you something?’

‘Of course!’

‘Will, um, do you think, well, you could ever get like that? You know, with MS?’

I took a deep breath. ‘I really don’t think so, sweets. Look at the treatment I’ve had! It was hard this weekend?’

‘Uh huh. It was really nice to see him, but really sad. I’m scared you’ll be like that when I’m older.’

‘C’mon kiddo, you know how tough I am. Tough as a toffee!’

‘So was he.’

‘Oh, I know sweets. A really strong person and what happened to him is just awful. But he’s been ill a really long time.’

‘I’d look after you, you know.’

‘That’s so lovely of you, thank you. But you know what the most important thing is? That you get on with your life. Everything is opening up for you. I’m doing just fine, sweets. I’m working, I’ve got Uni, everything’s great. You know I don’t need to ask you for help with anything. I like looking after you.’

‘Yeah, I know, but sometimes I wish you would ask me. I feel really helpless when you’re tired or your legs are sore. I’d like to make you a cup of coffee or a glass of squash. Or something.’

My heart broke into a thousand pieces.

‘Ok, let’s make a deal. Next time I’m really, really tired and have to go to sleep in the afternoon, you can wake me up after an hour with a cup of coffee? That would help me a lot.’

‘Deal.’

After growing up with ill parents, I’ve always been determined never to turn my son into some sort of carer. The thought horrifies me. But have I gone too far the other way? Am I somehow blocking him out?

And not only this fear, but also a dear friend of his, one of his close group of friends from school, passed away from cancer on Saturday. He was 17. The Teenager is struggling with appalling grief from both ends of the spectrum, at the beginning of life, and towards the end.

It is even more vital now, that I support him. But how best to do this when his thoughts are clouded by my MS?

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