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.

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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 …

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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.

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Still Waiting …

impatientNo thyroid tablets for six days now!

The weight should be dropping off!

Except, it isn’t.

I bumped into a passing acquaintance I hadn’t seen for a couple of years yesterday and we exchanged the usual, ‘how are you, so am I’.

I then waved my hands around my large body and apologised for my weight (why?). I seem to be doing that a lot over the last year or so. Embarrassment? Humiliation?

Anyway, I joked, ‘ah, pesky baby weight, lol.’

‘Aw, bless, you have a new baby?’ (I could see her mentally totting up how ancient I must be)

‘Nah, he’s 17 in August.’

‘Oh.’

I know I’m being impatient, but over the last eighteen months of thyroid tablets, I have packed on the weight. I am … massive … and I hate it. Don’t get me wrong, I never want to be skinny. I can’t quite believe I was a size 10 (ok, maybe 12) before The Teenager and I was perfectly happy with my curves and womanly figure. Right now, I’d settle for a 16.

But … this. This is unreal.

I hate mirrors. Mind you, I like mine – thank you Ikea. It’s just everyone else’s I hate. I leave the house thinking, ok, large but ok, turn to the left. Large but ok. Profile? Hmm. Then, like today, I see myself captured on one of those horrible CCTV cameras, waiting patiently to pick up a parcel at the depot. Who is that? And why did I even leave the house?

I’ve always believed it’s the person we are inside that should shine through, but try thinking that when you’re squeezing into fat jeans and a blouse that gives you a triple choc muffin top. It brings me down. I try to ease my shoulders back (not an inconsiderable task, given the size of my stomach) and sail when I walk. Glide. I will own this weight.

Nah. Doesn’t work.

I’ve never been beautiful, so it’s not an anguished cry for a lost nirvana. I just want to be me again. It’s as if my weight has galloped ahead and I don’t recognise myself. Shallow? Quite possibly? But when MS has already take so much from me, it would have been nice if it had left my metabolism alone.

Yet. In the back of my mind, in the depths of my despair, would I ever swap the treatment I had for zero thyroid problems? Not a chance. I’m not ungrateful. I’m just impatient.

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A Freedom Pass … With Restrictions

jailAlemtuzumab treatment gave me my life back – three times over – but also left me with Grave’s Disease.

It was a one in three chance, and you guessed it, I got it. Natch.

So for the last eighteen months, I’ve been oscillating wildly between an over- and under-active thyroid. Mostly under-active.

I’ve been on tablets and off tablets, ended up in A&E for beta-blockers, had blood tests every month, lost weight, gained weight, gained some more weight, and then some more.

In short, it’s been a gruelling time. It’s not much fun being a blob with an ever-expanding waistline, despite eating well and having a fairly active lifestyle when MS allows me to; I gained weight so rapidly I hardly recognised myself in the mirror, when I could bear to even look in one. My wardrobe shrank as my waistline expanded, leaving me skulking around in baggy t-shirts and slumped shoulders.

So it was with trepidation and anticipation that I saw the endocrinologist a week ago. Every time I go, they weigh me first. And every time I beg the nurse not to tell me my weight, preferring to look up at the ceiling and try not to cry. She normally consoles me with, ‘well, I’d never have thought you were that heavy, bless you’.

I met the doctor and ran through the usual questions. Yup, I’m a blob. Nope, I don’t have as much energy as before. Yup, I’m hungry all the time. She sighed, shuffled through my notes for quite a while then said, ‘It seems it has to come out.’

At last, a solution. It won’t get better, it won’t change and there may be more Alemtuzumab treatments in the future. I leaned forward in my plastic chair, eager to hear more.

‘So you have two options. Radiation or operation.’

‘Ok. I can deal with that (inwardly panicking). What happens next?’

‘You come off the tablets. You probably go into a thyroid relapse.’

‘Er …’

‘Yes.’

‘Er …’

I cast my mind back to the last time I was taken off the tablets – wondrous, fantasmical times of boundless energy and infinite well-being, the weight literally sloughing off me. Until I crashed.

There’s no other way. The tablets aren’t working. So, I’m four days into not taking them, and so far, so excellent. My joint pain has disappeared completely, I feel more alive and present than I have in a long time and I no longer resemble a sloth. I’m racing towards something and I know it won’t last forever, but for now, I’ll be making the most of it.

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