It’s My Hormones …

hormonesIt’s not much fun being fat curvaceous yet existing on a diet of chia balls and raw carrots with a single square of dark chocolate to brighten the dull evenings.

Ever since MS treatment played havoc with my thyroid, it’s swung between being over-active and under-active.

When it was over-active, the weight loss was quite spectacular (sigh), dampened only by ending up in hospital with severe heart palpitations and an inability to sit still for one minute.

Now it’s under-active (and then some), it’s dire. After gaining a pound every single day with my usual eating habits, I knew I needed to take drastic action, hence the carrot sticks.

So, after chomping my way through mounds of vegetables, getting to know my spiralizer (courgette spaghetti, yum), working out what farro is and how to make a lunch out of it and generally becoming a food bore, I haven’t gained a pound. But I haven’t lost any weight either. The unfairness of this is breathtaking.

Anyway, it was with much excitement that I went back for yet another endocrinology appointment last week. Would they reduce the medication, perhaps allowing me a glimmer of hope that I could wear a jolly sweater at Christmas without looking like a bauble? Could I increase my chocolate intake to two squares a night?

First up, the humiliating weigh-in. I tried balancing on one foot, but the nurse caught me out. ‘It’s my hormones’, I told her, ‘honestly‘. She looked at me with pity and waved me back to the waiting room, where I pulled out my never-ending Book Club book – only 1100 pages to go.

Finally, I was called and ushered into a tiny room. The doctor ran through a lot of numbers and letters, pausing every now and again to check some details. ‘You do know your thyroid is now rather under-active?’ Um, yes? Then she said the magic words, ‘I think we’ll halve your medication.’

‘Fabulous! Can I start today? Please?’

She gave me one of those huge hospital prescriptions and told me to take it to my GP, who would then convert it to a normal prescription and then pass it on to the chemist I have a repeat prescription with. Which could take a month. But I had a cunning plan.

On the way home I stopped at a pharmacy and asked if they had a pill-cutter.

‘You’re in luck, this is the last one.’

I drove home, emptied out all the tablets and neatly guillotined them in half.

That evening, I had three squares of chocolate.

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Life, Interrupted.

lifeI’m all booked in for Campath (Alemtuzmab), Round Three in mid-September.

Only problem is, so is The Teenager for his A Levels and me for my second year of the Master’s. Oh, and work.

My mind is spinning with lists, plans, worst-case-scenarios. And what on earth do I write about for my dissertation?

Luckily the pesky MS melancholia has lifted somewhat so I am no longer drifting aimlessly around the cottage full of angst and woe. Instead, I am bumping around the house like a pinball wizard, clutching bits of paper.

I really didn’t see this third course of treatment coming. I had imagined it somewhere else, years and years down the line. When perhaps I could stay in hospital and knit myself a bed-jacket and thumb through old copies of People’s Friend. And maybe commiserate with the lady next to me, bless.

In reality, I’m rushing around in between work, buying pyjamas, slippers, mini bottles of shampoo and conditioner. The Teenager is sorted. The cat is sorted. I’ve told Uni. I’ve ordered a pile of books to read when I’m off work.

In amongst all this rush, I need to take a step back and … breathe.

After my last relapse lifted, I was doing just fine until yesterday when MS slapped me once more right  in the face: I was suddenly pole axed. I staggered home from work, crawled to the sofa and fell asleep. When I woke up, I rationalised it, ‘it’s a one-off, it’s fine, it really, really is fine.’

Today. Before a thyroid appointment at hospital, I fell asleep. It’s fine.

And this is MS in a nutshell. You just never, ever know how it will be. From one day to the next. Like most of you, I wake up every single morning not knowing what MS has in store for me.

Funnily enough, the endocrinologist asked me when I last felt awful. I consulted my Little Book Of Symptoms (Both Weird and Fairly Normal) and said, ’29th July’. She looked at my blood test results, ‘oh, yes, there was a blip then, did you feel anything strange?’

Well, that’s a very, very long story …

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Sad, Sad World …

tedReally?

What is it with MS?

This melancholic feeling has descended like a lump on my life. And I hate it.

Yeah, yeah, life is hard with MS, but I mean, really?

It started when I drove home from work (a very good day, as it happens).

I sighed. Then I sighed some more, from deep within. And I felt a little bit sad.

Gah.

(lump on chest)

I got home, made a coffee and thought about it, then I sighed a lot and felt a whole lot sadder.

MS. A license to feel like crap. Except I didn’t want to.

I struggled against it. I organised my scarves (a tick on my to-do-before-campath-list). I shuffled through my herbs (another tick).

I cannot say how this melancholic feeling descends. It really is out of the blue.

Life trucks on in a great way, bizarrely- I sent my book off for an award and I bought some Brazil nuts for breakfast.

So what is this stoopid MS nonsense?

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Now I Know My A, B, C’s

examsExam results day for The Teenager.

Bitten nails, late-night angsty-chats with friends, contemplating the future.

And that’s just me.

These last couple of months have been an exercise in diplomacy, negotiation and extreme patience:

 

‘I’ve failed. I know it. I just know it. I have. So there.’

‘You haven’t.’

‘How do you know?’

‘Well, um. Ah. Good point. You tried really hard? And, you went through a lot of post-it notes?’

‘S’not fair. I bet the exam markers hate me. Maybe they couldn’t read my writing.’

‘I’m sure they’ve seen it all, don’t worry.’

‘Mum. You’re, like, so not helping. Please, leave me to my despair and close the door behind you, ta.’

This morning, finally, we got here. The Teenager plonked himself with a grunt onto the sofa and watched beaming kids opening their results live on telly. Probably not his best idea ever.

I went to work (after offering to take the day off and do something nice, like feed the ducks), put my phone on loud and waited. And waited. Phone rings.

‘Muuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuum.’ (heavy panting down the phone)

‘Hello dear!’

‘Muuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuum! I’m in!!’

‘Wonderful! In what, dear? In school? To get the results?’ (non-committal, just in case)

‘D’ur!! Like, I diiiiiiiiiiiiiiiiid it! I passed, gonna do my A levels, do my A levels, yay, like A levels.’

Phew.

I collapsed in a crumpled heap outside work.

‘Muuuuuum, just one problem.’

Gah.

‘You know how I have to register for the next two years? For the A levels? Well, like, I threw out my results from last year. By mistake.’

Oh.

Long story short, I left work, took him to school and he got a print-out. Sorted.

I dropped him off at a friend’s house before heading back to work.

I was a wreck. He’s out celebrating.

It’s all good. We got there in the end.

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Third Time Lucky …

campathMy MS has been slowly getting worse again, so I’m booked in for a third course of Campath (Alemtuzumab) next month.

I had a sneaky relapse earlier this year and another one just the other week.

First off, I know how lucky I am to be eligible for the treatment; the earlier two courses put a stop to the relentless grind of relapse after relapse.

I got my (so-called) life back on track. Things were good. Until they weren’t.

So now, at the busiest time in our work’s history, ever, I’m frantically sorting out details:

The Teenager – he will (hopefully) be embarking upon his A Levels (all will be revealed on Thursday). I want to make sure he’s settled and happy before the Campath. My wonderful friend, who lives just down the road, will be having him for two nights.

The Cat – she has a reserved place at a cattery ‘overlooking beautiful Welsh countryside’ and her cat basket is safely stashed in my car boot. With her favourite blankie.

The University – which starts two weeks after hospital. Gah. I’m booked in to sort out a scribe, in case I’m not well enough to attend that all-important first lecture.

The Book Club – a week after Campath. I have diligently started reading ‘A Suitable Boy’, all 1500 pages of  it.

And as for the hospital trip, after the last two times, I’m feeling more than prepared. I will bake a batch of chia-seed energy bars to take with me, should the snacking compulsion overwhelm me. No more Jelly Babies and Maltesers. My mum has offered to bring in fresh salads and tempting-yet-healthy treats.

No books this time, certainly not ‘A Suitable Boy’. ‘Erm, excuse me, would you please stop screaming through your lumbar puncture, I’m losing my place. Ta.’

Pillows, natch. Favourite blankie (it’s not just the cat). Stash of magazines, from which I will snip out a pile of ‘must-buys’ before binning them. Ear-plugs, notebook to scratch down my very important musings upon hospital life, mobile phone, herbal tea bags, a few tea lights to brighten up the ward in the evenings.

It will all be fine. What could possibly go wrong?

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