Category Archives: Symptoms and Treatment

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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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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You’re Back In The Room …

RelapseI was in the van with The Boss last Friday, nattering away about my new devotion to chia seeds and almond flour, when, blam, there I was.

I gulped, slightly surprised, then said,

‘I’m back! I’m really … here. Wow.’

The Boss rolled his eyes. ‘You never went away. Believe me.’

‘No, really, I just know, I know, this relapse or whatever it was, it’s just suddenly gone.’

‘What, so can like, do some proper work now? And what the heck are chia seeds anyway? Actually, don’t answer that.’

It’s impossible to describe the sensation a relapse brings with it. Not just the usual problems, the tiredness, the wading through cotton wool soaked in treacle. It’s the disconnection, the sense of otherness. The sensation of being apart from people. It’s lonely.

For two weeks I’ve simply been focused on getting through the days. And this time around, I made sure I was still out and about, no matter how airy-fairy I may have seemed to everyone else. Please excuse my feet, dodgy hands, the slightly glazed expression.

For me, relapses descend quickly. I know the warning signs – the buzzy head, fuzzy brain and wuzzy feelings in my body. And just as quickly, they leave. Although they always leave behind some extra little symptom I never really had before. And the usual suspects remain.

I remember asking an MS nurse all those years ago, ‘but how will I know I’m having a relapse?’

She replied, ‘Oh, you’ll know.’

And she was right. Just like when I asked my midwife how I would know I was in labour. After she stopped laughing, I kind of got the feeling, yup, I’d know. She was right, too.

Anyway, the end of a relapse brings a certain clarity. The fog lifts and I realise just how much I’ve let slide. Which is fine. Life still goes on, despite it all. My mum very kindly disposed of the pigeon my cat wrestled home one morning and has brought me pesto salads and boxes of onion-y things to chomp on when I’m too tired to cook.

The Teenager gets his exam results and turns 16 next week, so the timing couldn’t be better. I tried to arrange a birthday meal with him the other day (having booked the day off work). I got a text back, ‘Can fit you in for brunch, 10.30 to 11.15. Any good?’

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How Little Is Too Much?

duckWell, this relapse trundles slowly on.

I’m still wading through the days, clutching on to passing moments of clarity and tiny pockets of energy.

Thanks to Ocado, The Teenager is fully-stocked with his Special K and baked beans, his latest requests thanks to his new training regime (his muscles are shaping up nicely – very impressive, especially when compared to my flabby efforts).

The cat has her Whiskas and Dreamies. We have Bloo in the loo, milk in the fridge and blessedly, Ocado even delivers stamps. So on the surface, we’re doing just fine.

Take a look underneath and it’s a slightly different story.

The paperwork pile is a mess of unanswered letters. I haven’t taken my meter readings – too much effort to bend down into two different tiny cupboards with the torch on my phone to squint at the teeny weeny numbers.

The cobwebs are multiplying at an alarming rate. The vacuum remains silent. I’m still doing the bare minimum and it’s exhausting.

After waking today from a three hour afternoon kip (I mean, really), I tidied the kitchen then sat down. I opened the mail, then shoved it into a corner. Time for another little lie down. The smallest things take forever.

But I will not be beaten. I know I’m playing a tricky game. I keep on pushing myself, over and over again. It’s the thought of going back to those awful couple of years when I was coping with relapse after relapse. I just cannot return to those long, dark days, spent shut inside my house.

So I continue ‘as normal’. I still go to work (The Boss would totally disagree with this statement). What my colleagues don’t see though is my state of utter collapse when I get home. I still meet up with friends, ignoring my spaced-out state and heavy eyelids. I pay for it afterwards. But it’s worth it.

I just worry that I’m pushing myself a little too far. Apart from the relapse affecting my walking, speech and balance, I’ve now got a throat infection, making swallowing a real pain.

However, on a much, much brighter note, I had a wonderful phonecall from my MS nurse this afternoon. The MS team has recommended that I have a third course of Alemtuzumab (Campath).

There is light at the end of the tunnel. And this time, it’s not an oncoming train.

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