Spring Cleaning, MS-Style

springI live in a teeny-tiny old cottage with a tall teenager, a small kitten and around 25 spiders.

Not as pets or anything, they just hang around in gangs in dark corners and chuck their webs everywhere. Normally I’m quite happy to lie on my sofa, dazed with MS fatigue, tracking their progress across the ceiling and back (I’m in awe of their bustling energy).

There was a huge one in the bathroom for months who became such a fixture I’d nod and say, ‘Morning, Kevin’ every day; when The Teenager finally cottoned on, Kevin mysteriously disappeared.

Anyway, we’ve had an obscene amount of sunshine these last couple of weeks which has showed up my general lapse in housekeeping in all it’s glory ( I blame all the essays I’m writing at the moment …). Coupled with a go-faster kitten who tears around the house at top speed all day, leaving chaos wherever she goes, our house is in desperate need of a little Spring Cleaning TLC.

So today I put my plan into action. It’s simple: do only what is Absolutely Necessary. I dug out my feather duster, stumbled after the kitten who lunged for it and ran away, knocked my knee against the bannister and sat down for a nice cup of tea and a slice of Battenburg.

Suitably recovered, I knew the bath non-slip thingie needed cleaning so I filled the bath with cold water, sloshed a bit of bleach in it and left it to marinade for a couple of hours. Simple.

I flicked the duster around the whole house, chased by the pesky kitten and numerous spiders. I used a tumble-dryer sheet (cheating, but it works) to dust the books and ornaments and straightened rugs and cushions. Then I stopped for an espresso and another slice of cake.

Ok, next thing. Tidied my desk. Re-arranged my Sharpies. Shuffled a few piles of papers. Done.

Got the cordless vacuum out – bought after endless bouts of tripping over the cord of my old one. Shoved it round a little, battery ran out, put it on to re-charge. Sit down.

Give up.

It’s fine. I’ve fitted low-wattage bulbs to ensure I see less dust. We’re definitely going to rock the boho-chic-tiny-cottage look for a little while longer. If I have the energy, I’ll fluff the duvets. Making sure the kitten isn’t nestling in the middle of it first, chewing on my feather duster.

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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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The One Where I Have a Non-MS Symptom

cowboyBizarrely, after a couple of weeks struggling through some kind of random MS flare-up where I’ve experienced every symptom I’ve ever had and then some, I am overjoyed to have something not connected to MS for once.

Before MS, I was pretty healthy (apart from being slightly Rubenesque) – never really had colds, coughs or flu, never had ear infections or a sore throat.

Never blagged days off school as a child, something I often recite to The Teenager when he attempts his best ‘sick-face’.

Now, however, I exist in an odd state of constant observation, or ‘MS Watch’ – did my foot drop that teeny bit more than usual? Why am I walking into walls again? Will the vertigo give it a rest? Will I ever be able to eat spaghetti or use chop-sticks in polite company again?

Anyway, I officially have … stenosing tenosynovitis (impressively medical-sounding), otherwise known as trigger finger (not so impressive and it makes me sound like a cowboy). Ok, so not the most glamorous of ailments, but boy, it hurts. I wake up every morning having to unclick one of my fingers from a weird bent position and throughout the day the pain gets progressively worse.

After months of putting up with it, the pesky finger showed no signs of improvement and, as my hands play up already, I took myself and my finger to my GP after having a chat with the nurse when I was having my monthly Alemtuzumab blood test. Trigger finger plus hands that just won’t do what I tell them to is dire.

My GP was, as ever, fabulous. I explained my frustrations, held out the guilty finger and felt a bit silly. She’s referring me to the trigger finger expert, so fingers crossed (minus the dodgy one) it should be sorted.

As an uncanny aside, I know MS is not contagious (of course), but is it possible for people to experience ‘Sympathy MS’? My long-suffering friend and boss appears to be exhibiting more MS symptoms than me at the moment. He trips over everything, he knocks his coffee over, drops his Jaffa Cakes and generally makes an MS-pest of himself.

Today, he dropped his pasty on the newly-installed radiator in the conversion we’re doing. When I stopped laughing (it took a while), he said, ‘bit strange, but I’ve got this weird pain in my finger, like it gets bent and hurts to unclick it’.

‘Oh, really?’

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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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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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