Tag Archives: multiple sclerosis

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 23 2016
12 Comments
Emotions

Happy 28th Birthday To Me!

birthdayI was diagnosed with MS four years ago this week.

If you’re anything like me, and each MS-diagnosed year feels like a dog year, then that makes 28 years I’ve had to get used to this.

And, whoah, do I feel every single one of those years.

Four years? Is that all?

But, as with any birthday, there is a lot to celebrate. Challenges? I’ve had a few. I’m still here. Bad times? Many, and I’m still here. Horrendous, vile, despicable times? Too many to mention but they are behind me now. This week is about having a look over how far I’ve come, not just about the hurdles I had to clamber over to get here.

The Teenager is thriving; he’s just finished his last exam, has actually hoovered his entire bedroom and emptied his bin and even decided to start cooking for us both a couple of nights a week, in preparation for university life. First up? Beans on toast. Yum. It’s the thought that counts.

Don’t tell the boss, but I love my job. The alternating work sites so I’m never bored, the camaraderie, the fresh air. I adore it. I can pick and choose my hours so medical appointments are never a problem. There’s no tutting or eye-rolling when I take a bit of time out to shake off the Uthoff’s or get to grips with foot drop.

I’ve just entered the dissertation stage of my master’s degree. It’s flown by and here I am. Completely unprepared and uncoached in academia-speak, but I will try my hardest. And when I hand over my hard-backed version to my tutor in twenty years, I will be beaming from ear to ear.

And last but not least, I have been through a major life-upheaval with my mum being ill. I found strength I never knew I had and thanks to my fabulous friends and family, I have navigated the ups and downs that a serious illness brings, only this time I am at the other side of it.

The downsides? I’m still working on my spontaneity – I can’t wait to say, ‘yeah, great, it’s 7pm, it’s a beautiful evening, of course I’ll join you’, or, ‘ok, macrame wasn’t quite what I had in mind for an exciting hobby, but, sure, I’ll give it a go.’

Or the usual gremlins – appearing drunk, tripping/falling over, wonky speech, dodgy hands, etc.

Yet for all that, I can’t quite believe how far I’ve come since the Bad Old Days of Deep Sorrow and Wailing. I think I am a kinder, more compassionate person and I appreciate every single positive thing in my life beyond measure.

MS might have laid down a challenge, but I challenged it right back.

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May 20 2016
6 Comments
Daily Life

Spontaneous? Give Me A Couple Of Hours …

fat faceI have been out twice this year.

With my ill relative taking up most of my spare time (what little there is of it – Teenager, Masters, Cat), this is quite an achievement.

So when my friend texted last week asking me to try a new restaurant, my first thoughts were, ‘I’m shattered, I can’t, I’m not dressed, I’m tired. I’m boring.’

Cannily, he sent the text four hours before said restaurant reservation, so I had fewer excuses, apart from the fact that I had just applied a stinging face pack and had inadvertently loaded on a good few pounds since the last time I had been out for dinner, way back in 2015.

He picked me up and we set off. I checked my blotched complexion in my tiny mirror. I tugged my hem and shifted my considerable weight in the car seat.

We got there early, so went to the pub round the corner for a drink. Reader, I have never felt more conspicuous. I was twitching with MS and my walk was funny. In short, I looked a few sheets to the wind. When we sat down, I tried to look sophisticated but got wine up my nose when my elbow slipped on the shiny table as I was holding my glass.

After our drinks, we walked across to the restaurant. It was empty. The waiter flourished menus in our faces and told us he had the perfect table reserved just for us. The one in the back corner. By the kitchen and next to the toilets.

Inwardly, I collapsed. My friend took the reins and asked for a table nearer the front. Was it me? Had he taken one look at my quivering large mass and decided I was better suited at a table out of the way? My self-confidence has taken a serious knock this year, but this was surely confirmation?

I hastily ordered and popped to the loo where they had fitted a circus fun-house mirror. You know, the one where they make you look ginormous. I turned this way and that. Ah. We have a problem. Four months of comfort-eating have taken their toll and I am now a Blob.

I quickly ran through some positive thinking mantras – ‘you are a worthy peep, you may be fat but you have a nice lovely personality, get back down there and enjoy yourself, life is short’, etc, etc.

I took a deep breath. Here goes. Well, I sailed back to the table with only one tiny foot-drop trip, sat down with a triumphant thud and had a wonderful dinner with my friend. The best this year, lol.

The diet starts tomorrow.

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