Aug 08 2016
24 Comments
The Teenager

An Awfully Big Adventure …

taxiLast weekend, The Teenager spent his first night Alone At Home.

I was off to an MS Society meeting as a Council member, in Carmarthen, 64 whole miles away.

I planned to stay overnight on the Friday as we’d arranged to hook up with local peeps connected to MS that evening, before the meeting on Saturday.

So far so good.

Would The Teenager manage to hold the fort, feed the cat, lock the doors and hang up his towels for 24 hours without parental supervision? Worth a shot?

It started well: I’d booked an early train, smug in the knowledge that I could read my book whilst sipping a cup of coffee and admiring the beautiful coastal scenery from my reserved table seat next to the window.

Erm. No.

The previous train was cancelled so when mine pulled up, it was a free-for-all. Elbows, swear words and shoving. I somehow pushed my way to my seat (now fully occupied, natch) and started to cry. Honestly. I went red, stuttered and pleaded. I explained the MS and nerve pain and I sat down in the vacated seat, embarrassed and humiliated.

Almost two hours later, I arrived, dragged my case and headed for a taxi. The hotel was up a steep hill and half a mile away, the sun was blazing and I was close to collapsing. Long story short, I was refused a taxi; my journey was too short. I offered to pay a tip. I explained the MS. Again. I was still refused.

Reader, I thought I was going to die. It took me almost an hour to stagger to the hotel. I stopped numerous times, heat intolerance bearing down, my legs yelling in pain. I arrived at the hotel eventually and crumpled in a heap at the reception desk. Not the best start.

Anyway, The Teenager. Throughout my epic journey, he’d been texting me:

‘Where’s my goalkeeper gloves?’

‘Can I order a game off Amazon? Got your credit card saved :-)’

‘It’s on offer :-)’

‘You know when I go to the Reading Festival, can I have some spending money?’

‘Can you transfer £1.28 to my account so I can buy a calendar for my phone?’

Back at the hotel, after lying down for an hour, I had a brilliant evening and went to bed looking forward to breakfast in the morning; there’s something about hotel breakfasts, with their mini pots of jam and rubbery scrambled eggs.

The next morning, I checked in with The Teenager:

‘Morning! Have you fed the cat?’

‘Nah. She’s dead.’

‘Oh.’

A bit later;

‘Mum. Ok if I have some friends over for breakfast?’

‘As long as you clean up. How many?’

‘Eight.’

‘We only have a tiny house?’

‘S’ok.’

Our meeting went well and I packed my things together ready to go home. My phone beeped:

‘Oh yeah, I’m going to go for a world record’.

‘In what?’

‘Most chicken nuggets eaten in 3 minutes.’

‘The current record is 31.’

‘I did 20 in 1:10.’

‘Ah. Ok.’

‘You looking forward to having a record-breaking son?’

What could I say? I got home, aired the lingering smell of bacon, eggs and beans and was greeted by a very-alive cat.

We survived.

p.s. a follow-up – BBC Wales picked up the story of the taxi refusal and reported it here. Also, Carmarthenshire Council have traced the driver through CCTV and will be inviting him in for an interview …

Tagged , , , , ,
Jul 30 2016
12 Comments
Symptoms and Treatment

Feeling Awfully Tubby (F.A.T.)

pashminasDespite the lack of thyroid meds, my gland still refuses to play ball and my weight stubbornly refuses to drop.

Not one teeny tiny eeny weeny pound.

The remnants of a relapse haven’t helped, but, really?

So. I’m in the middle of a conundrum:

  • First, the scary thought – this could be me, like, forever.
  • Second, I may never, ever feel the unparalleled joy of a size 14 pair of jeans, ever again.
  • Third, I’m so unremarkable that people don’t even sympathise with, ‘such a shame she’s so large, she has such a pretty face.’
  • Fourth – plastic surgery?

Where do I go from here? Well, I’ve counted my options; I could:

  • Brave the Larger-Ladies stores
  • Buy fun-and-large-jewellery to draw attention away from tree-trunk thighs, triple chins and chipmunk cheeks
  • Dye my hair a ‘wacky’ shade (blue/pink/magenta) so people don’t notice I’m actually a walking, talking blob

It doesn’t help that The Teenager has transformed his body over the last year and is now a strapping 6′ 4” muscly-peep and scrutinises everything he eats to the nth calorie. He’s offered to take me to to his gym – preferably late at night – just in case he bumps into his mates. He shows me simple exercise I can do with cans of beans and bottles of Evian.

No matter how many times I play I Am Woman, it doesn’t help.

Invincible? Erm, no.

I have a new plan – invest in those large pashmina/throws. M&S sell a nice range. Just wear all black underneath, chuck on a pashmina/throw and a bit of an attitude and I could be ready to go? Or are they picnic blankets in disguise? Was I in the wrong department?

It’s a learning phase. I must bring forth my inner loveliness, whatever that means. People may balk at my bulk, but I should always present a positive and shining aura.

I’m trying.

Tbc …

Tagged , , , , ,
Jul 22 2016
18 Comments
Daily Life

Missing. Inaction …

inactionWhoah.

This relapse (spike in symptoms/exacerbation/whatevs) has drained me.

After falling face-first into some gravel, things have progressed steadily downhill.

Plates have been flying, I’ve become intimately acquainted with every wall in my house – and discovered every sneaky cobweb – and to top  it all, vertigo descended yesterday and has been plaguing me ever since.

These last two weeks have been an exercise in containment – getting away with as little as possible to keep up the facade that I’m ‘doing OK’.

I’ve cancelled meeting up with friends. I have a birthday present to deliver that’s now three weeks overdue. I won’t be taking guitar lessons for the foreseeable (long story). Life, for the moment, consists of a need-to-do basis.

I had an initial meeting with my dissertation tutor and I agreed to hand in 7,500 words of a novel by mid-September. Lol. I’ve written just over 100. To be fair, they are excellent words and it’s just a shame there’s not more of them.

I’m becoming a little fed up of lying on my sofa after work with a Dulux paint chart, eyeing up the walls, just to pass the time of day. I’ve bought a tonne of gossip magazines, caught up on my Sky Planner and watched a wide range of subtitled films. My head aches.

I hate being forced to do the minimum; I am a doer, not a wait-er. I would rather drag myself to work than lie in bed. However, I might just be made to do that very thing, and fairly soon. The endocrinologists agreed today that after two years of yo-yo medicines, I will have an operation to remove my thyroid, as I developed Grave’s disease, a 1-in-3 chance of having Alemtuzumab treatment.

It was a chance worth taking, but the logistics will take a little working-out. Two weeks off work, unable to move my head and the possibility of a husky voice; the last one seems a fairly benign symptom though. Mariella Frostrup?

Anyway, as always, life has to go on and I am co-ordinating from The Sofa HQ. I watch the hours passing on my clock. I go to work, get home, collapse, go to sleep, get up and do it all again. Why? I don’t have a choice.

Today, I met a new endocrinologist. He was reading through my file as he ushered me into the non-soundproof clinic room.

He said to me, ‘Wow, for someone with MS, you do a lot, don’t you?’

‘Yes’, I answered.

Tagged , , , , , ,
Jul 11 2016
12 Comments
Symptoms and Treatment

Been there, done that …

gutterAs I was lying sprawled on the gravel at work, still holding two (thankfully empty) coffee cups, I promised myself, ‘this time, it’ll be different.’

Rewind a day or so and the first inkling something wasn’t quite right came when I floated away.

I hate that feeling. I’m here, but not quite. It’s my relapse calling-card.

My hands played up, a grabbing-arcade-machine-gone-awol. I misjudged my steps, I tripped countless times and scuffed my brand new shoes. I was exhausted beyond belief. On Saturday, I literally could not get up off the sofa from 2pm til 9pm, despite all my efforts.

I was gripped by fear – fear that The Teenager would notice, fear that I couldn’t function, fear that I was immobile and couldn’t do a thing about it. So I lay there, invisible threads of absolute fatigue snapping into place all around me.

Late that evening, I finally managed to crawl into bed and collapsed.

Relapses, a spike in symptoms, an exacerbation, a blip, whatever it is when it comes to MS, whatever it’s termed, it’s dire and we don’t always need an MRI to prove it, although in my case they usually do.

I had a pocket of energy after work the other day, so ploughed my way through three lots of laundry, laid bark in the garden and cooked up a massive batch of chicken. I cleaned the kitchen, vacuumed the house, fed the cat, placed a food order, caught up with paperwork. I was dying inside but there was no alternative. After that, I collapsed.

I’ve learned to get one step ahead of a relapse. I hate being inactive on the sofa ( I hate my sofa so much it’s unreal). But I know it has to happen, no matter how much it kills me. I think if I can do everything possible, I will guarantee I’ll be able cope if something even worse happens in the next few days. It’s the ‘Single Parent With MS’ Dilemma. But at least the laundry’s done, and the t-shirt that makes The Teenager’s muscles really stand out is fresh and ready to wear. It’s priorities.

Back to the gravel. I lay stunned. The boss shouted down to me from the roof he was working from. My body had taken a huge whack and the pain was immense.

I had to get up. And you know what? I did. And for that I will be forever grateful as not all of us with MS could say that. So, as long as I’m able, I will treat relapses with the contempt they deserve.

Been there, done that …

Tagged , , , , , , ,
Jun 20 2016
12 Comments
The Teenager

Hurdy Gurdy, Bork Bork Bork …

hurdy gurdyI am teaching The Teenager how to cook.

He’s quite possibly flying the nest next year and bit by bit, I’m teaching him valuable life skills, such as:

  • If you hang your towel up after a shower rather than leaving it in a heap on the floor, it will dry!
  • If you lock the door after coming in late, we might not be burgled!
  • If you bring the tower of bowls and plates down from your bedroom, you’ll make your long-suffering mum very happy!

It’s taking a while and we still haven’t cracked the loo-roll dilemma (i.e. replace an empty one) or the milk carton angst (when it’s finished, it doesn’t go back in the fridge, d’uh).

But I live in eternal hope.

Today, he was deep in thought, sprawled out on the sofa, fingers flying across his iphone keypad as I was trying to type up some uni notes for my first dissertation meeting.

‘Mum. Muuum. Mum. How many calories in an egg?’ he asked.

‘Dunno.’

‘Four eggs?’

‘I don’t know.’

‘Three eggs?’

‘I. Don’t. Know. Why?’

‘Well, I went to the gym this morning – see, look, muscles (obligatory muscle flex), I’ve got 1367 calories left to eat. Minus the protein shake. Plus the jelly snake I ate on the way home from school.’

‘That’s nice dear.’

‘Muuuuum?’

‘What?’

‘You busy?’

‘Noooooo, why?’

‘It says here on my app that I should cook scrambled eggs with four slices of brown bread, no butter. How do I make it?’

I talked him through it. Twice.

‘I hate cracking eggs.’

‘Most people do.’

‘Can you help? Pwwwweeeaaassse?’

I abandoned my not-going-anywhere proposal, sighed deeply for dramatic effect and joined him in the kitchen. A carton of eggs lay decimated on the counter. There were four left un-bashed.

I demonstrated what he had to do and he massacred the remaining ones into a bowl.

‘Now whisk.’

‘Am whisking.’

‘Put your bread in the toaster. Heat your frying pan up, put in a drop of oil and wait for it to get warm. There. Now!’

‘Use the spatula. Spatula! Not the ladle. No, and not that one, that’s a potato masher.’

‘Mum, spatula is a funny word, isn’t it?’

‘Erm, yes, I guess so.’

I showed him how to sweep the eggs gently around the pan, then handed control to him. The eggs were pummelled into submission, not daring to become anything else but scrambled eggs.

Finally, all was assembled. He splattered the resulting meal with tomato sauce, grabbed a drink and ate it all within two minutes.

‘Mum! Mum. That was ace (a surprising, new word in his vocabulary). And it only took two minutes! Result.’

And with that, he tapped his food stats into his app, put his empty plate in the kitchen and sauntered upstairs.

Tagged , , , , ,
← Older posts
Newer posts →