Monthly Archives: August 2015

It Is What It Is

it is what it isMS is scary and you have to be pretty tough to deal with it.

Sometimes I think I’ve cheated it, got away with milder symptoms, not such drastic life changes.

Then I remember the falling over, being sacked for having MS, the life-long partner scarpering at the first signs (garbled speech and wonky walking).

So, yes, on the surface, I seem ok. Normal, even. Whatever that is. Then I remember my third course of Campath, due in two weeks. Three days in hospital.

Alone.

Apparently my MS has ‘reactivated’. Which I knew after the bad relapse in the Spring, but it’s always hard to have it realised through a scan, with a bright, enhancing lesion.

Anyway, after years of utter despair, I have come to terms with this disease. I think.

It is what it is. I was chatting to my mum earlier and she was telling me about my dad and his MS. There is no comparison. He died before my fifth birthday, aged just 35,  and one of my earliest memories is of him at my fourth birthday trying to eat ice cream. And failing.

And now I have MS.

Is it a burden to have a parent with MS? I am now that parent, with MS.

I feel a compulsion to try and explore every possible treatment. I have signed up to all the PhD research, I have put my signature to more blood tests for MS research. I make myself available for future courses for people with MS.

Is it enough?

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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