Jun 16 2016
6 Comments
Symptoms and Treatment

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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Jun 14 2016
10 Comments
Symptoms and Treatment

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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Jun 08 2016
20 Comments
Blogging

I Get Knocked Down. But I Get Up Again …

GodfatherWell, the truly troll-y emails I received knocked me sideways and then way down.

Normally, I would read, fume, delete and ignore, but this year has been fraught. Not the best timing.

The very medium which brought me to the trolls attention has once again become my saviour – my blog. Your comments and emails have been incredible; I’ve read them over and over again and they really have built me back up. I honestly can’t thank you all enough.

I don’t know where I would be without my supportive MS family.

I decided to write an open reply the day after The Teenager went on holiday with his dad, to give me time to gather my thoughts, have a few sniffles and many pangs of massive self-doubt, then be ready for when he gets back. Which is today. Or so I thought.

I sent him a text last night wishing him a fab flight and had organised a day off work to pick him up. The fridge is stocked with high-protein foods and the shelves are bulging with Special K.

He texted back, ‘Yeah, ta. Flight’s tomorrow?????’

Yup, MS brain at work again. So I have another full day in a clean and tidy house, with no wet towels hanging up on the floor, no sink full of bowls, no loud music. Bliss.

A bit more time to think before I put the whole trolling episode behind me. It’s so easy to hide behind a computer screen and spew bile. It’s also easy to click ‘send’, without giving any thought to the damage inflicted. My blog is public – my name is on the photo at the top of the blog. The only time I remained anonymous was when I was going through a court case for unfair dismissal, on the advice of my lawyer. As soon as the case was settled, I was out there.

I’m real and it’s been hard to write some of the posts over the last four years, but I think it’s important to show what real life can be like with an illness like MS. If I had written anonymously, I doubt I would have been more honest, and I wouldn’t feel a connection with you guys, because you wouldn’t know the real me. ‘Here’s me looking fat with a couple of TV and film stars!’ ‘Here’s me, attempting to look intelligent and intriguing on Twitter!’

A funny thing happened to me today. I was browsing in a charity shop (holding a size 18 top, gah), when a man walked up to me and said, ‘Hello, I know you!’. Long story short, I had bought a canvas picture of The Godfather for The Teenager from him through Gumtree a good year or so ago and we had got chatting on his doorstep. I mentioned my book and he later bought it.

He said to me, ‘You know, I would never normally have read your book, but after meeting you I did. It’s totally changed my perception of MS. When’s the follow-up?’

If us peeps with MS can bring attention to MS, live as well as we can with MS and offer a hand-up to those of us who are struggling, our MS family is stronger together.

So, that’s MS and me – 1, Trolls – 0. Or, as The Godfather would say, ‘Never hate your enemies. It affects your judgment.’

p.s. I just have to include a comment on my last post, by my Aunt Karin, my dad’s sister:

As your aunt and your late father’s sister I must say how proud I am of you. You are a joy and an inspiration to so many. Never let your detractors dampen your spirit. They should “Stumble in Your Flats for a Day”.
Uncle Ronnie and I love you so very much.

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Jun 01 2016
80 Comments
Blogging

MS Is Truly, Horribly Awful. And Then Some.

disgraceIt must be that time of year, but the trolls are back out.

The usual complaints – I make light of MS, I haven’t suffered enough to understand, I am a disgrace. And so on.

So rather than replying to each individual email, here goes:

How dare I complain about MS when I am taking a Master’s degree? – If only you knew how much of a challenge this is. I have no career left; that’s in tatters. My inner compromise was to take on a job to pay the bills but which left me with a void once I got home. So I decided to try my hand at writing. It’s not going terribly well. A victory for the haters?

How lucky am I to have had Alemtuzumab treatment, so how come I complain about MS?  – Yes, I am hugely fortunate and there is not a day that goes by that I don’t think about this. And you know what hurts? I took this treatment first and foremost to be there for my son – as a single, divorced parent with 99.9% of responsibility for my son’s upbringing, I had to be there for him. My dad died of his MS symptoms when he was 35. I don’t really remember him. And every single day, I am grateful that my son will never face that.

I haven’t suffered enough to understand MS – there’s a reason I don’t blog from my sofa, when I can’t get up and my son cries. If that’s not suffering, I don’t know what is. And haven’t I ‘suffered’ enough, growing up without my dad?

I make light of MS – yes, I do. Sometimes. Read more of my blog – it varies, depending upon what is happening in my life. Some blogs are heartfelt, some are light-hearted. That’s real life, in all it’s glory.

I am a disgrace to MS – I might be, it’s a personal decision how you read my blog. If you want to see how a very normal, boring, fat(ish) woman responds to a huge change in life, read on. A disgrace? If disgrace means campaigning, then yes I do. If disgrace means being a boring fat(ish) woman with MS who just so happens to blog about it, then yes, count me in. MS is not my entire life, it is part of it.

I’m not disabled, so what do I know? – so I only walk with a stick when times are rough? I only fall down the stairs now and again? Or trip over and bang my head once or twice a month? Oh, ok.

I don’t know what I’m talking about – Yes, I do. I know way more than you when it comes to my own MS. MS is unique to every person. So why is mine less valid than yours?

If my detractors would like me to suffer more, be in more pain, have more injuries and give up work, then yes, I am an absolute disgrace to MS.

But, if there is something wrong with that last sentence, then I am, in my own little way, coping with MS.

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May 26 2016
4 Comments
The Teenager

The One About The Teenager and A Tense Stand-Off

examsExam Season.

Two words guaranteed to strike fear into any parent, never mind the students.

It was all going so well, at the beginning. My printer was working overtime as The Teenager printed off reams of study notes then carefully highlighted relevant paragraphs in day-glo orange and yellow.

He drew up a study schedule, factoring in breaks and even ten minute ‘Talk To Mum and Ask Her To Make Toast’ slots. Bless him. Loo breaks were twenty minutes but I didn’t take it personally.

Inwardly, I was congratulating myself. After the drama of his exams last year (shudder), he seemed to have turned his life and attitude around. I would boast, ‘oh, my son, he’s doing awfully well, you know. Studies every night for four hours.’ I felt like a Good Mum.

So I wasn’t worried when he trotted off to his first exam, clutching his bottle of water and new pens. I went to work and waited for the inevitable text – ‘Easy. Banter. Lolz. Are there any bananas in?????’

Instead, I got: ‘I need to speak to you URGENTLY. I’m leaving school.’

‘Ok dear, see you at home. We’ll have a chat when I get home.’

‘No, I’M LEAVING SCHOOL.’

Oh.

The Teenager was in meltdown. His exam panicked him. He panicked. And decided to leave school, permanently.

When I got back The Teenager was pacing round the cottage, which at 6’3″ took him three steps one way and two the other. He seemed frustrated.

A very long story short, there followed 48 hours of tense negotiations and stand-offs, including two trips to school to talk to his head of year. I was drained, he was exhausted. We broke for Noodle Box deliveries then resumed discussions, round and round and back again.

I downloaded college applications, Burger King applications and apprenticeship applications and looked up the French Foreign Legion (my patience at this point, wearing thin). We reached an agreement. He would drop one subject, get through the rest of the exams and wait for the results in August.

His last exam was on Monday. Today is Thursday and I’m still recovering. We had a chat last night and The Teenager said, ‘I don’t know what I was so worried about, that was easy. And now I get to catch up on my X-Box, and play footie with my friends all summer. Nice.’

I didn’t have the energy to reply. Instead, I cut myself a jumbo slice of lemon drizzle cake that my friend had baked for me to cheer me up, switched on the telly and collapsed onto the sofa. Nice.

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