Tag Archives: multiple sclerosis

Mar 20 2015
14 Comments
Daily Life

On A Roll …

baconFantabulous news: my latest MRI scan shows no new lesions.

The new neuro I saw said I was experiencing ‘paroxysms’ of MS. Not heard before, so I did what most of us do and googled it when I got home.

In other news, life continues as normal:

  • My once semi-eloquent speech is still garbled and unintentionally hilarious.
  • My brand new suede boots are scuffed beyond repair after stumbling all over the place and now join the graveyard of other similarly-afflicted boots.
  • I have an ever-expanding collection of spectacular bruises from arguing with walls/bannisters/the shower.
  • I brighten up the boss’s day, every day, with my slapstick moves. Who needs a banana skin when I’m around?
  • I’m still single, and after a terrifying, tentative foray into online dating, I will probably remain so until at least 2073 (if I live to be 100).
  • I refuse am reluctant to squeeze myself into a tubi-dress and have hair extensions just to take ten years off my age. I wish.
  • I still love bacon butties in work. A habit I am attempting to break with the purchase of a Nutri-Bullet.

Anyway, apart from the usual MS gaffes, The Teenager is in the midst of GCSE Angst. Being a dutiful parent, I’ve ordered him his entire Amazon wish-list. An expensive mistake.

Along with the study notes, the revision books and the pens, he had to absolutely, totally, definitely have a Breaking Bad notebook which would of course ensure top marks in all subjects. They were all delivered yesterday and remain in a pristine package on the IKEA desk I painstakingly put together.

‘How’s your notes going?’

‘S’fine.’

‘Oh, um, lovely. Anything I can help with?’

‘Fed up wiv ‘elfy cereal, can I have Coco-Pops?’

‘Oh. Too much sugar?’

‘Never enough.’

‘Ha, that’s funny!’

‘Seriously. D’urrrr. And close the door behind you and take the kitten with you, ta?’

Oh, ok. I retreated and gathered up the laundry. And the kitten and her bizarre collection of hair bands.

So. My scan says I’m fine. I don’t feel fine. What should I do? How long do paroxysms last? Can I take a chance and buy a new pair of boots that I won’t scuff? And most importantly, will I stop speaking English with a German/Yoda-esque syntax?

‘Study, you will. Much learning achieve, aspire you can. Dark forces, encounter, you could. Succeed!’

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Mar 11 2015
8 Comments
Symptoms and Treatment

The Day Baked Beans Made Me Cry

bakedYou know that whispered word, beginning with an ‘R’ and ending in ‘elapse’?

Well, I’m not sure if it’s a flare up or the dreaded ‘R’-word. Whatever it is, it’s awful.

It started over a week ago with the usual brutal, gatecrash-entry that MS specialises in.

A sudden, total collapse in energy, not seen since 2011. Garbled speech, crazy balance and a sense of being utterly spaced out; so much so that I have now nicknamed myself The Space Cadet.

Just to make things even more interesting, I’m having weird jolts of vertigo. Not continuous (I can just about cope with that), but sudden, horrible shifts in my vision, like a camera-shutter adjusting itself rapidly (younger readers, you may have to google this).

And if that wasn’t bad enough, I’m now feeling nauseous every evening.

Oh, and one more thing. The bizarre crying. I cry at everything. A piece of music, a random comment, the cat running up my curtains. And baked beans.

That was the final straw. Who on earth cries when they make baked beans on toast?

The Teenager had requested this particular meal choice when I was writing the shopping list for the week, a monumental task. So, great. Easy, fairly healthy, quick.

On the fateful evening, I assembled everything and served it up. I looked at the plate and burst into tears. The beans just looked so … sad. So vulnerable and innocent and somehow, a little bit lonely, even though they were surrounded by other beans. It was then that I realised I needed professional help.

So I called the MS team this morning and left a rambling message. I had a call back soon after and blurted out my tales of woe, capping it off at the end with, ‘and apart from that, I’m fine!’.

The Teenager is away in London this weekend, so maybe I will have some time to gather myself together before I go back to hospital with my Baked Bean Saga. How embarrassing. Kittens, babies, parcels tied up with string I can understand, but baked beans? I have a feeling I’ll never live this one down.

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Mar 09 2015
6 Comments
Symptoms and Treatment

A Private Affair

privateIn the UK, NHS doctors and consultants practising privately can be a contentious issue.

The usual arguments:

it costs the taxpayer £610,000 to train every doctor (based on newspaper reports), it’s a drain on resources, they’re trained at our expense in the UK then move abroad, you can book to see the exact same consultant privately within a week, rather than waiting six months on the NHS.

I admit, pre-MS, I thought the same, despite having had a step-father who was a doctor.

Now, I’m adding up the cost of my MS to the NHS:

  • The consultations with a neurologist
  • The Alemtuzumab treatments (plus overnight stays in hospital)
  • The appointments with the MS nurses
  • The appointments with the MS bladder specialist
  • Several trips to Accident and Emergency
  • The appointments with the neurology physiotherapists
  • The MRI scans
  • The blood tests (every months for five years after the last Alemtuzumab treatment)
  • The consultations with the thyroid specialist
  • The appointments with my GP

For this, I have paid nothing. Not a penny. I am not a tax payer right now – being a divorced, single parent for the last 15 years has meant low-paid jobs below the tax threshold but allowing me to be available 24/7 for my son.

So when I was concerned with how my MS was developing last year and, too impatient to wait for my NHS appointment several months away, I booked to see my neurologist privately. I don’t have money to burn – and my mum split the cost with me.

It was the best money I ever spent.

I had a whole hour to talk about everything. My neurologist simply does not have that time allotted to be able to do the same for every patient in the NHS. Say for example he has several thousand NHS MS patients on his books in South Wales. Not forgetting the other illnesses he specialises in. The figures just don’t add up.

Ultimately, I have only paid that sum for my treatment, in over three years. And for that, I am grateful. In the grand scheme of things, it is a truly insignificant amount to what I have received in return – thousands and thousands of pounds.

Since then, I wonder why more people don’t book in privately, at least once. And before they say it’s unaffordable, think about it. Add it up – we don’t know how lucky we are in this country.

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Mar 03 2015
12 Comments
My Ramblings

What MS Isn’t

dancingThere’s plenty written about what MS is, but what isn’t it?

It’s not:

  • An ‘easy’ illness (I’m probably not the only person to be told, ‘Well, thank goodness it’s nothing more serious, eh?’)
  • An excuse – it is what it is and I won’t be apologising for it
  • A competition – why tell me your MS is so much worse than mine? If it makes you feel better, go ahead; it just makes me feel guilty
  • Always obvious – if you passed me in the street, you would have no idea I had MS (until I stumble, but hey, I could be drunk?)
  • Cushy – you might think enforced sofa-dossing is a dream come true, I hate it with a passion
  • The same for everyone – put 500 MSers in one room and you’d have 500 different stories

Recently, stem-cell treatment for MS has hit the headlines, and how – all the tired phrases were rolled out: ‘MS sufferer’, ‘cut down in the prime of life’, ‘tragic’. Funnily enough, I am none of these. However, I have been contacted by various people over the last few days all telling me the same thing – MS is curable! You can get back to real life now! You can dance again!

Now, anyone who has ever seen me dance will know that this is not necessarily a good thing. The only shapes I throw are the bodies of other people across the dance floor as I bump into them. Yes, the news from the trial is wonderful and I couldn’t be happier and of course the media loves a good news story, but behind the headlines there are thousands of us, millions of us across the world, just trying to get on with life.

MS, and more importantly, living with MS, has changed phenomenally over the last three decades. Sadly, the public perception of it is lagging far behind. Behind every diagnosis there is a unique life story and we don’t want that to come to an abrupt halt just because our brains threw up one lesion too many.

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Feb 24 2015
2 Comments
Symptoms and Treatment

Pass Me The Spanner, Numpty

beautifulA most interesting day at work, what with the higher dose of Pregabalin settling down – it was a bit like ER, with The Builder subtly creating all the drama:

‘Spanner’

‘Yup, Boss.’

‘Snips.’

‘Yup, Boss.’

‘Hammer.’

‘Yup, Boss.’

‘Tape’.

‘Well, I have The Best of The 80’s?’ or ‘Simon and Garfunkle’.

‘Plumbing tape, you numpty’.

‘Yup, Boss. Just joking.’

And so it continued. I floated around, munching on granola bars and slurping endless cups of coffee (mine was the pink ‘Hello Kitty’ mug, the Boss got the ‘Mr Busy’ one). I seem to be having a mini-relapse since upping the Pregablin dose – my hands moving a few seconds too late or too early, feet not moving properly or dragging, dropping things and generally feeling spaced out.

A few hours later, we wrapped it up and I was dropped off at home.

The most important thing is, my nerve pain has been reduced drastically and it’s a feeling that goes way beyond relief – the nagging, crawling, aching pain in my legs every evening, making the smallest tasks impossible, has been knocked back down to just my feet. Which isn’t brilliant, but a whole lot better than before.

I can now stand up properly when The Teenager gets back from school, and look semi-parent like. I no longer lie on the sofa all evening, dreading getting up. I can read a book without the constant, nagging pain pulsing away, ruining everything.

The downside is I still feel as if I’m trapped in a marshmallow cushion. I can’t concentrate. I am very, very slow. Everything is now somehow wondrous. When I cooked pesto pasta for The Teenager this evening, I spent an inordinate amount of time just staring at the sauce after I took the lid off. So green, so pesto-y, so, well, wondrous.

I’m sure it’ll pass and my mind will realign itself with my body again (by the weekend, PLEASE). But for now, as my body refuses to do what I command it to and my mind is somewhere completely different, I will make the most of stopping to pick up leaves from the garden, turning them over and marvelling at their unique patterns, and allow myself to admire the beautiful, brown, shiny spheres that are … Maltesers. Beautiful.

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