System Shutdown – Prepare to Standby …

shutdownYou just know, don’t you?

As soon as you wake in the morning, get up and fall smack into the nearest wall, you just know.

MS is not only content with corrupting your system, it’s staging a total takeover bid.

I had one of those days yesterday.

Usually, I can keep stuff under wraps, get on with life despite the inner physical and mental turmoil that MS brings. Not so on one of those days.

My vision was blurred, I was exhausted and I felt utterly, totally crushed. I could feel my brain shutting down to Basic Mode.

Inside, I was horrified. Worst case scenarios were filtering into what was left of my brain. My main aim was to get through the day and still appear relatively normal to The Teenager; so long as I could nod and smile in the appropriate places, hand out some money and put a wash on, I was covering all bases.

The Teenager had other ideas: he fancied a heart-to-heart about the football relegation zone, who was headlining the Reading Festival next year (gah) and the merits of various protein shakes. I nodded and smiled in the appropriate places. I think.

I fell asleep on the sofa at 10am and woke up three hours later to find a glass of squash with a post-it note from The Teenager attached, reading, ‘Good Morning! (smiley face)’.

Later on we had the Loose Jeans Drama. He was going out for a sixth form party. He got dressed (over several hours). Finally, he came flopping down the stairs, arms swinging loosely, an angry look on his face.

‘Look, just, like, look.’

‘Oh. Very nice dear. You look lovely.’

‘No. I don’t. Look. I can’t go. Looks stooopid.’

Pause. His hair? His shirt? Not enough Lynx? Too much? I had to be very, very tactful.

‘Er, you look, well, so handsome.’

‘Yeah, right, mums always say that, like, d’ur. Noooooo. My jeans.’

An hour-long drama cut short, he has lost a lot of weight at the gym. His jeans are loose. Very loose.

‘Well, it just shows off how much weight you’ve lost? Hmm? No?’

‘Ahhhhhh. You just don’t understand. Can I have a tenner?’

He left in a whirl of Facebook updates and texts, cursing his jeans. I collapsed. I have no idea how I survived the day. A day spent doing nothing except lying on the sofa, unable to concentrate, frightened and hoping that tomorrow would be different. It was an MS blip. We all have them?

I lay virtually unmoving until 9pm and crawled into bed. I slept for nine hours straight, woke up, didn’t trip into the wall and life looked a little, only a little, brighter. For now.

As for The Teenager, he had a great time at the party, even with loose jeans.

Tagged , , , ,

I Like Long Walks On The Beach …

me… I also enjoy cosy nights in front of a log fire, watching a romantic dvd and snuggling up with the one I love, the snoogly-woogly peep.

Don’t we all?

Especially when we’re writing dating profiles. Is there anything worse?

My first attempt was at least honest:

Slightly, chubby, divorced 42 year old with stroppy Teenager and confused cat seeks soul mate. P.S. I have MS. Apply within.’

I didn’t post it.

Now I am of a certain age, and have been single since being brutally dumped when I was first diagnosed with MS, I think it would be kind of nice to have a Significant Other.

Someone to share a croissant and hot chocolate with? Maybe we could browse around a second-hand book store before linking hands and wandering to the nearest cafe. We would navigate the cobble-stones and laugh when I tripped. Again. We would exchange smug, knowing looks.

He would Understand. He would smile at my speech hiccups, when I swap consonants and slur (just a little). My Scottish accent would of course win him over. He would take my arm and guide me when he saw that I was weaving around like crazy.

I can picture him, rugged face, scarf (I know, weird, huh?), piercing eyes. If you find him, please let me know.

Back in the real world, I have read all the advice. First and most importantly, the majority of people meet the love of their lives in work. Last Thursday I was surrounded by nine men. I was quite overwhelmed at one point and had to take a Diet Coke break.

However. Four were scaffolders (all married), three were solar panel electricians (all married, one unhappily), two were plumbers (both married).

So that’s a no-go then.

Next piece of advice is, ‘talk and interact with everyone you meet, they may just surprise you!’

Erm, ok.

I went to the Co-Op and lurked around the steaks. Aha. A man. ‘Um, garlic butter or just, you know, butter?’ I asked, with an artfully-raised eyebrow. He scarpered. I was the strange person in the steak place. It’s come to this.

I slunk home, defeated.

I re-wrote my profile: ’42 (but don’t look it), divorced (happily), one Teenager and no cats. MS. Apply within.

So far, zero replies. But you never know?

Tagged , , , ,

Give and Take

backflipIf I could do backflips and turn cartwheels, I would.

For the first time in over four years, I have zero nerve pain in my legs. It’s nothing short of a miracle.

Yesterday, after consultation with my MS nurse and GP, I doubled my dose of Pregabalin. Within hours my legs felt, well, normal. I prodded them, stood up, sat down, walked across the room.

Ah. Of course. As with anything MS-related, it gives with one hand and takes with the other. Sure, I could feel my legs, but my balance was shot. I staggered around the kitchen, unaware The Teenager had snuck up behind me for a fridge-rummage.

‘Wha’s up with you, muv?’

‘S’alrigh’. Meds. Strange.’

‘You’re talking funny.’

‘Yar.’

‘Can I have a tenner for the cinema tomorrow?’

‘Erm, yesh.’

I was slurring my words. My head was spinning and I felt drugged. The Teenager found the last yoghurt I’d been hiding behind the jam and wandered off, tutting.

I flopped onto the sofa, polished off the chocolate Buttons and tried to think. Pregabalin is also prescribed for Generalised Anxiety Disorder as well as neuropathic pain, so I guess that’s where the drugged, cotton-wool-brain feeling came from. It can also affect balance and speech. Excellent.

I weighed up the pros and cons. The nerve pain is manageable during the day, excruciating at night. I’ve spent hours whimpering on the sofa in agony, unable to concentrate on anything. Whole evenings have been wasted. Could I swap this for a spaced-out feeling? Would I trip more than usual?

I’m going to give it a go.

The pain in my legs has defined my life too much and is a constant MS-memento. Unfortunately I still have the numbness in my feet, so the foot-drop is here to stay and sometimes I can’t feel my feet at all, although the pavements are there to remind me as I trip over yet again.

So for now, I will ricochet around the house, falling over the rugs and the cat, but I won’t mind so much as my head will be floating around somewhere else. I haven’t been outside yet – I’m about to get ready to take The Teenager to town for lunch.

Should be interesting?

Tagged , , , ,

The Teenager Gives Me Nightmares

festivalOne morning last week, I was leisurely sipping on my bowl-sized coffee cup, contemplating another thrilling day at work.

All was well with the world. Sort of.

Until.

”Mum, mum, mum, MUM, MUM, MUUUUUUUUUUUUM’.

 

The Teenager tornadoed into the kitchen, waving his mobile.

‘Huh?’

‘You know you, like, love me, you know I’m your amazing, like, adoring son, and you want the best for me and you want to make me happy and I would be really, really happy if you …’

I put my coffee cup down.

‘Huh?’

‘S’like, ah, sooooo ‘citing. Reading!’

‘Reading?’ (at last, The Teenager has inherited my love of books, the joy).

‘Yeah, no, Reading, not reading, d’uh, that’s, like, books. Reading! Can I go, can I go, can I go, can I go? Please, please, purleeeeeze?’

Ah.

That Reading.

The mud-fest music extravaganza, on a par with Glastonbury. I saw tents, mountains of beer, debauchery.

I gathered my thoughts, put down my cup and tried to look serious.

‘Well. Um. Really? We’ll see.’ (standard parent answer).

‘Nooooooooo, all my friends are going, I’m looking for a tent on Gumtree, there’s a payment instalment plan, the Chilli Peppers have confirmed, I will just, like, die, if I don’t go.’

Hmm. This was serious stuff. What could I do?

Reader, I booked his ticket. I gave him a lecture about drugs, alcohol and washing properly. I told him not to body-surf across the crowds (risk of neck injury, gah). He screen-shotted the booking page as he hovered over my shoulder and Facebooked his friends.

I pushed down my rising panic. How have we come to this? Not so long ago he was desperate to see Bob the Builder and Friends live on stage and was happy to take home a helium Bob balloon.

As he hugged me when the booking was complete, he asked me to google trolleys.

‘Huh? What for?’

‘Like, d’uh. To cart all the beer for the weekend. It’s going to be EPIC.’

Tagged , , , ,

A Grave Decision

yayIf you choose to have Alemtuzumab treatment as I did, you’ve got a one in three chance of developing Grave’s disease, a thyroid disorder.

I got the illness and yet another insert in my medical file.

It’s fine – when I was rapidly losing weight and feeling like I could take on the world with the excess energy I had, it was sublime.

The severe cartoon-like heart palpitations were another matter however, and were sadly followed with beta-blockers to bring me back to earth with a thud.

Since then, I’ve been on varying doses of thyroid meds to calibrate me back to normal. Up a little, down a little.

I had a consultation with an empathic and lovely endocrinologist today who fortunately has a great insight into Alemtuzumab-induced Grave’s Disease.

I’m to stay on the meds for another six months, but the likelihood is I will have to choose between losing my thyroid or becoming radioactive (for a week).

Hmm. I googled, and wish I hadn’t. One post started, ‘so, you’ve elected to have your throat cut – are you aware of the risks?’

I met The Boss for Emergency Talks tonight (long, sorry work saga) and explained my dilemma.

I took a sip of wine and said, ‘and I’ve looked in to it, you know, if I get the thyroid taken out, I could, like, lose my ability to … shout.’

‘Can you go private? I’ll pay.’

Charming.

I asked him how he was, what with his broken arm, dodgy knee and headaches.

That obviously reminded him and I waited as he popped out a few pills from their blister packs.

‘Well ..’

‘Yes?’

‘You know my dodgy knee?’

‘How can I forget, Boss?’

‘Erm, well, the doctor thinks its, well, um …’

What?’

‘Gout’.

Ah.

‘Isn’t that what older people get?’

If looks could kill …

Tagged , , , , ,