A mixtape for multiple sclerosis

A mixtape for multiple sclerosis

Wednesday, 20 June 2018

Pounding

My latest MRI is done and dusted and now I'm just waiting for my neurologist to interpret the results.

It was a slightly shorter scan than I'd anticipated at around 30 minutes and I only had chance to get through a few of the tunes on the CD I'd chosen to have pumped through the (not massively effective) noise reducing headphones.

This was the first time that I'd realised that the hospital staff were also being subjected to my musical taste - I had previously assumed that they were able to just send it directly to me without having to suffer/enjoy it in their control room.

The thought of having to listen to other peoples' music choices while working - like being in an office with a radio stuck on a station you hate - made me shudder slightly.
But not too much: no moving allowed in the tube.

It's not easy to find suitable music for the scanner. Once, with an MRI on Christmas Eve, I was saved from having to make my own decision by having festive music selected for me as I slid my way in.

The staff explained they were desperately trying to help everyone enter into the festive spirit, hence the seasonal songs and the tinsel around the tiny tube. But I have never been able to listen to When Santa got stuck up the chimney in the same way again.

Sunday's scan indicated that while I had hit the jackpot with some of songs on my chosen CD, the opening bars of Wide Open Space by Mansun were a little ironic given that I was trapped motionless in tiny tube under a face cage.

But what was undoubtedly successful was this week's tune. It somehow fit the swooshing and clanging of the magnets without jarring uncomfortably.

With a carpe diem chorus, it is relentlessly and joyously anthemic - and that's what you need when you're stuck in a cylinder with just your chronic disease for company.

I'm pretty sure this particular listening scenario is not what the band had in mind when they were composing, but I'm delighted they wrote it anyway.

:: Pounding by Doves

Wednesday, 13 June 2018

Wishing well



Pic i: Me. Or, quite feasibly, an Ood                                 Pic ii: My damage from a previous scan
                                                                                                          (It's the patchy white areas)


Bit weird to think of an MRI as a wishing well isn't it?

A Smartie tube of claustrophobia, I understand. The clangy-bangy doughnut of doom, I get. The face-caged, emergency-buttoned, wee-inducing cell of solitude, yes.

But wishing well? Perhaps not the first thing springs to mind.

Neverthless, it's the comparison that keeps popping into my head as my next (and umpteenth) appointment with the not-quite-dream machine draws closer.

Only instead of loose change, it'll be me delivered into the darkness to make my own wishes for oooh, a good hour and a half.

And I will be wishing. Wishing that :

  • that there are no new lesions found
  • that Tecfidera is doing what it should
  • that whatever is found impacts as little as possible on my family
  • that all the research is getting us closer to a cure
  • that everyone affected by this stupid disease has access to the support they need to live their lives as well as possible

Outside of the MRI we can put on a brave face and a happy smile. We can keep calm and carry on because there really is no other option.

But inside it, there's just us and some motionless time to think about why we've been put into that tube in the first place.

To consider how our lives might have been different if only we'd not woken one day to find we couldn't see out of one eye, or couldn't feel our feet or couldn't find the words we used to know.

How we've sacrificed some of the things we might have wanted, how we've reset and redrawn our parameters and how we may have lost friends, family, workplaces or opportunities.

I'm pretty sure MRIs have seen their fair share of confessions, of negotiations, of whispered prayers and of silent tears.

And I'm equally sure that they have seen quiet resolve, internal pep talks, gallows humour and stiff upper lips.

I know I have wished for just a bit more time, for just a few less symptoms, for the chance to make the best of what I have.

I've also asked for help to keep finding the strength to cope. 

I can't always see it but I know that strength is in there somewhere. And I really should learn to realise that I can be proud of that.

So wish me well. On Sunday, I will be my listening to some very loud magnets while hoping to hear the sound of my own pennies dropping.


Wednesday, 6 June 2018

Black cat

I had an 18-month review with my neurologist recently. As a result of which, I am oscillating (what a great word) between two emotions.

The appointment went well – hurrah.
The appointment went well – immediately superstitious.

I did all the little tests pretty well:
  • Strength, good.
  • Getting up off the floor without using your hands, ungainly, but good.
  • The one where they poke you with a sharp thing to see if you can feel it, good. (This has not been good for nine years. I have no idea why feeling has suddenly returned, but it has.)
  • Balance and eyesight – not so good, but you can't have everything.
My neurologist declared it was the most well he'd ever seen me. And I've been seeing him for six out of my 14 diagnosed years.

I should be cartwheeling around the room, but the problem is that the last time he said I was doing pretty well, three weeks later I was in hospital with an almighty relapse.

I'm fully aware that there's not an evil link between what he says and what my immune system decides to do, but I'm more than a little superstitious about this.

Funny isn't it? We spend so much time battling bad news and dealing with the utter guff that MS throws us, that we should be utterly delighted when the news is positive.

And I am. I'm extremely grateful. I'm also quite scared.

I'm not completely sure why I have reacted with such trepidation. Was the news too good? Perhaps a part of me thinks that having a bad review will somehow keep other, much worse times, at bay. Perhaps I dare not believe it because if I do, I'll let my guard down and get walloped by the relapse stick again. 

The rational part of me knows this is all utter superstition. I'll either relapse or I won't.
But I've always been a bit of a one for touching wood or waving at magpies or looking for signs from the universe and I wonder if living with something so completely out of my control has made this tendency worse.

What this appointment has made me realise is that I'm finding it almost impossible to appreciate the happy medical news without thinking about what happened the last time I did.

However, I could well be worrying about how to deal with the good news for nothing. Just because the external signs aren't there, doesn't mean the internal progression isn't happening. So it's off for a head and spine MRI next week. Those stark grey images will be the real test.

In the meantime, I guess it's just carry on as normal. But perhaps I'll try and get as many black cats to walk across my path as possible.
Maybe that was the subconscious reason we rescued two black cats for re-homing. 
Does it work like that?




Wednesday, 30 May 2018

Breathe (a little deeper)

I was recently invited to write a blog for the MS Trust, which was very nice. They suggested writing about holidaying with MS.

And as we're at Butlin's this week (yay! mascots! breakfasts! entertainment!) it fits quite nicely. Although, had I known now what I knew when I wrote this piece, I might have added in a top tip about not smashing a bone in your foot before going.




The weather's picked up, the BBQs are out and the ice-cream van is making its tuneful way up our road. This can only mean one thing: the holidays are hurtling towards us.

As a general rule, breaks away are meant to be a relaxing experience. But when MS comes as part of the package deal, this isn't always the case. was diagnosed 14 years ago and have picked up a few holidaying tips along the way.

Where to go...
There's a whole world out there to explore and while MS should not diminish your wanderlust, it may well have some impact on where (and when) you go.

Temperature might be the first thing to consider, your symptoms may be better in the heat, or you might feel less fatigued in the cold. Choose a time and place that most suit you.

Alternatively, you could play the temperature lottery by holidaying in the UK – we do this and have occasionally hit the jackpot.

Destination decided, onto your accommodation. It may sound obvious, but make sure it suits your needs. Are you away from it all or are amenities close by? Lifts as well as stairs? Air conditioning or good heating? Disabled parking? Free stuff in the rooms? (Not strictly an MS issue, I just like little bottles of shampoo.)

Make sure you plan in any vaccinations and double check regulations about medications that can be brought in to a country.

Top tip: Don't dismiss the unexpected – after years of self-catering in small coastal villages, I never thought I'd love a large hotel at a big holiday park. But entertainment on tap delights our daughter and the treat of someone else cooking saves my energy. We're repeat visitors, so the familiarity is also a bonus for those inevitable cog fog days.

How to go...
Whether by train, plane or tandem, there are things to consider on the journey.
How long will it take? Will the travel exhaust me? Have I built this additional fatigue into my break?
Who is coming with me? Do I have support if I need it on the journey? If travelling alone, do I have ways of getting help if I need it?

What do I need with me? Passport, meds, blanket, fan, phone, water?
If travelling by train, you can check with the operator what their arrangements are for supporting passengers with disabilities. National Rail has information about the accessibility of stations and how to get assistance during a journey.

If you're flying within Europe, passengers with disabilities are legally entitled to support. 
A similar situation applies in other countries including America, but this isn't the case everywhere in the world.
If you're embarking on a cycling or camping adventure, I have no useful suggestions, but simply take my hat off to you.

Top tip: make sure you know where the toilet stops are en route.

Before you go...
Gah. The endless admin of MS doubles when it comes to holidays.
I find it useful to write down the things I need to check before I go. 

This includes, but is not limited to: where is the local gp/health centre/hospital/dentist? Have I got enough meds to cover my break? Have I packed all the equipment/documentation/personal supplies I will need? Have I taken out holiday insurance? Exactly what insane volume of clothing will I have to pack to cover all my temperature issues? Why won't the cats get in their baskets for the cattery?

Top tip: write a checklist of things you need to and get someone to help with the packing.

Off you go...
...and have a really great time.


Top tip: We put up with a fair bit of this MS nonsense during the year, we deserve a break.


:: Breathe (a little deeper) by Blameless


Wednesday, 23 May 2018

Accidents will happen


In between last week's blog and this one I've managed to fracture my fifth metatarsal. You know, the one that the footballers always seems to smash.

Sadly, it wasn't done in an impressively sporty way, but instead in an almost comedy fashion; a gas meter fell on my foot from a great height.

As you might imagine, it's quite painful and I'm now in a foot boot and on crutches.

I'm interested in how being visibly poorly is going to play out.

As MSers we are so used to the cries of “but you look so well!” that we'd be forgiven for having a flipbook to hand with photos of our MRI scans as a way of proving that we're actually not.

This time, there's no getting around it – there is a huge black boot at the end of my leg and I'm hobbling about on metal sticks.

And this is, understandably, so much easier for other people to comprehend. There is a visible issue so it's easier for people to relate, to offer support and to sympathise. It's easier for them to believe.

MS leaves few visible signs. Yes, I sometimes have a stick, yes, I have had to wear an eye-patch, but the day-to-day issues of fatigue, cognitive symptoms or emotional turmoil leave no obvious traces.

So it is not surprising that we're so often able to pass as healthy. The problems come when we're not believed.

There are too, too many stories of people with MS being refused the help they need. And this, I think, is either because there isn't the understanding – or there isn't the willingness to take the time to develop it.

I don't expect every person I meet to have an in-depth medical knowledge of my illness, I don't expect them to be able to list the symptoms, but it would be nice if, when presented with the fact I have it, people could take a few moments to chat to me about it.

I don't mind telling you, in fact I'll probably overshare, because without talking, listening and asking questions, how are we going to gain knowledge?

If we can't be open to the conversation, how are we ever going to understand?


*I have learned something from this experience. We went to see our daughter in a dance show at the weekend and since I'd just had the accident, we were able to borrow a wheelchair. Eye-opening.
Please don't carry on a conversation over the head of someone in a chair. Not only does it really hurt your neck as the sitter to keep looking up, it also makes you feel irrelevant and vulnerable.

Wednesday, 16 May 2018

Milk and alcohol


MS: Hey! Wake up! Wake up!

Me: Gggnnnnn. Wha...

MS: Come on sleepyhead, it's an exciting day!

Me: Gnn. What time is it?

MS: It's 3am!! Best time of the day, the world's all shiny and new. Come see, come see.

Me: It's WHAT time? Good God, what do you think you're doing? Go back to sleep.

MS: Can't! Too excited!!

Me: Oh great, I love it when you're in one of these moods. What now?

MS: Well, it's today isn't it? It's only here. After all this time, it's finally here.

Me: Erm?

MS: Oh you big sillyhead, it's today! It's only my appointment with that funny little doctor man who thinks he has all the answers about meeeee.

Me: You mean MY neurology appointment?

MS: Yes, that's right, my funny little doctor appointment. After 18 months, it's finally arrived. Oh I do love seeing him.

Me: Do you?

MS: Well, durrrr, yes. It's so funny the way he chats on to you about what's been happening and then makes you do all those tests that quite frankly make you look ridiculous....

Me: Err, thanks?

MS: ...yes, you know the ones: touch your nose with your finger but careful, don't jab yourself in the eye now. 
Or put one foot directly in front of another, try and walk in a straight line, whoops, don't fall into his desk, you clumsy muffin. 
Or when he jabs you with a sharp stick to see what you can feel – or not. 
Or, oooh, I like this one, cover your good eye and now read the chart. The chart. This chart, over here.

Me: Ah yes, those ones.

MS: Oh I do find them so very entertaining. It's like taking a desperately sub-standard show pony out for a stumble round the grounds.

Me: Right. Quite annoyed now.

MS: Ooooh, scared.

Me: Anyway, I think you'll find you've got it the wrong way round – it's me taking you out to be held up for inspection. I'm the one putting you under the spotlight to see what havoc you've been wreaking over the past year-and-a-half. To see if I've managed to carry on despite you, to see if I've managed to hold onto some semblance of sanity, self-respect or sense of humour and to see if the the meds I'm on are doing the trick of holding you at bay.

MS: Hmm, some interesting thoughts there.

Me: Well, er, yes.

MS: Veeeery interesting. They deserve some reflection don't they? Some time to dig deep, hold everything up to the light and really and truly and honestly explore how you feel about the possible answers... *pauses* Well, I'll be off now.

Me: Is that it? Is that all the input I'm getting, usually you're overflowing with irritating insights.

MS: Well, it's late isn't it. Or early. Oh look, it's 3.10 now – just enough time for you to sit awake and ponder on all those veeeeery interesting thoughts.

Me: Yes, I will.

MS: In the darkness. On your own...

Me: Erm, suppose so.

MS: Long time till morning you know. Lots of lovely time to think. Ah well, sweet dreams.

Me: Gnnnnnnnnnnnggggggghhhhhhh.

Wednesday, 9 May 2018

Annie's song


It's really starting to feel more hopeful and Spring-like now. A reason to celebrate, I think.

Added to which it's soon the official day this of my favourite poets.
So, with thanks to the weather, the beauty in the world around us and Dylan Thomas, here is his lyrical tribute to his childhood.

(If you like, you can really treat yourself and listen to the magnificent Richard Burton work his magic on it.)

Fern Hill


Now as I was young and easy under the apple boughs
About the lilting house and happy as the grass was green,
The night above the dingle starry,
Time let me hail and climb
Golden in the heydays of his eyes,
And honoured among wagons I was prince of the apple towns
And once below a time I lordly had the trees and leaves
Trail with daisies and barley
Down the rivers of the windfall light.

And as I was green and carefree, famous among the barns
About the happy yard and singing as the farm was home,
In the sun that is young once only,
Time let me play and be
Golden in the mercy of his means,
And green and golden I was huntsman and herdsman, the calves
Sang to my horn, the foxes on the hills barked clear and cold,
And the sabbath rang slowly
In the pebbles of the holy streams.

All the sun long it was running, it was lovely, the hay
Fields high as the house, the tunes from the chimneys, it was air
And playing, lovely and watery
And fire green as grass.
And nightly under the simple stars
As I rode to sleep the owls were bearing the farm away,
All the moon long I heard, blessed among stables, the nightjars
Flying with the ricks, and the horses
Flashing into the dark.

And then to awake, and the farm, like a wanderer white
With the dew, come back, the cock on his shoulder: it was all
Shining, it was Adam and maiden,
The sky gathered again
And the sun grew round that very day.
So it must have been after the birth of the simple light
In the first, spinning place, the spellbound horses walking warm
Out of the whinnying green stable
On to the fields of praise.

And honoured among foxes and pheasants by the gay house
Under the new made clouds and happy as the heart was long,
In the sun born over and over,
I ran my heedless ways,
My wishes raced through the house high hay
And nothing I cared, at my sky blue trades, that time allows
In all his tuneful turning so few and such morning songs
Before the children green and golden
Follow him out of grace.

Nothing I cared, in the lamb white days, that time would take me
Up to the swallow thronged loft by the shadow of my hand,
In the moon that is always rising,
Nor that riding to sleep
I should hear him fly with the high fields
And wake to the farm forever fled from the childless land.
Oh as I was young and easy in the mercy of his means,
Time held me green and dying
Though I sang in my chains like the sea.

:: Annie's song by John Denver