Category Archives: Symptoms and Treatment

The One Where I’m Called A Liar …

oh-reallyRegular readers might remember the drama I had in the summer when I was refused a short taxi fare.

A throwaway line in a blog post about The Teenager and a potentially dead cat was picked up by the BBC.

I guess it’s a sad indictment that I’m so inured to being treated shabbily now I have MS that I didn’t make more of a song and dance about it at the time and I will always regret walking away from the taxi line, embarrassed and upset.

Thankfully, Carmarthenshire County Council took up the case, tracked the driver through CCTV cameras and pulled him in  for a chat.

So far so good. The lovely peep at the Council has been keeping me up to date and I fully expected the driver to put his hands up, give some kind of excuse – the economy, stress, a bad day, whatever – and we’d all be on our way, with the him perhaps being a bit more mindful in the future.

So I really wasn’t prepared for the phone-call I received yesterday; The Licensing Committee had met, the driver was there to put his case forward and a statement I had prepared was read out to the fifteen members.

The driver has denied everything.

Apparently I only asked him for directions.

Because of course, that’s what someone with MS would do, after an extremely uncomfortable train journey, searing heat and facing a long trek up a hill with a suitcase to somewhere I had never been before.

The CCTV shows me speaking to him for over a minute – rather long for the directions of ‘up the hill and take a right’. In reality, I had been arguing my case, pulling out my ‘I have MS’ card, paperwork relating to the MS Society Cymru Council meeting I was there for and basically pleading for him to take me to the hotel, a large tip guaranteed.

The Committee will be meeting again in December to hear more evidence and I have now decided to appear in person. If there is one thing I cannot stand above all, it is to be called a liar.

I’ll be driving there.

The case continues …

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Feeling Awfully Tubby (F.A.T.)

pashminasDespite the lack of thyroid meds, my gland still refuses to play ball and my weight stubbornly refuses to drop.

Not one teeny tiny eeny weeny pound.

The remnants of a relapse haven’t helped, but, really?

So. I’m in the middle of a conundrum:

  • First, the scary thought – this could be me, like, forever.
  • Second, I may never, ever feel the unparalleled joy of a size 14 pair of jeans, ever again.
  • Third, I’m so unremarkable that people don’t even sympathise with, ‘such a shame she’s so large, she has such a pretty face.’
  • Fourth – plastic surgery?

Where do I go from here? Well, I’ve counted my options; I could:

  • Brave the Larger-Ladies stores
  • Buy fun-and-large-jewellery to draw attention away from tree-trunk thighs, triple chins and chipmunk cheeks
  • Dye my hair a ‘wacky’ shade (blue/pink/magenta) so people don’t notice I’m actually a walking, talking blob

It doesn’t help that The Teenager has transformed his body over the last year and is now a strapping 6′ 4” muscly-peep and scrutinises everything he eats to the nth calorie. He’s offered to take me to to his gym – preferably late at night – just in case he bumps into his mates. He shows me simple exercise I can do with cans of beans and bottles of Evian.

No matter how many times I play I Am Woman, it doesn’t help.

Invincible? Erm, no.

I have a new plan – invest in those large pashmina/throws. M&S sell a nice range. Just wear all black underneath, chuck on a pashmina/throw and a bit of an attitude and I could be ready to go? Or are they picnic blankets in disguise? Was I in the wrong department?

It’s a learning phase. I must bring forth my inner loveliness, whatever that means. People may balk at my bulk, but I should always present a positive and shining aura.

I’m trying.

Tbc …

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Been there, done that …

gutterAs I was lying sprawled on the gravel at work, still holding two (thankfully empty) coffee cups, I promised myself, ‘this time, it’ll be different.’

Rewind a day or so and the first inkling something wasn’t quite right came when I floated away.

I hate that feeling. I’m here, but not quite. It’s my relapse calling-card.

My hands played up, a grabbing-arcade-machine-gone-awol. I misjudged my steps, I tripped countless times and scuffed my brand new shoes. I was exhausted beyond belief. On Saturday, I literally could not get up off the sofa from 2pm til 9pm, despite all my efforts.

I was gripped by fear – fear that The Teenager would notice, fear that I couldn’t function, fear that I was immobile and couldn’t do a thing about it. So I lay there, invisible threads of absolute fatigue snapping into place all around me.

Late that evening, I finally managed to crawl into bed and collapsed.

Relapses, a spike in symptoms, an exacerbation, a blip, whatever it is when it comes to MS, whatever it’s termed, it’s dire and we don’t always need an MRI to prove it, although in my case they usually do.

I had a pocket of energy after work the other day, so ploughed my way through three lots of laundry, laid bark in the garden and cooked up a massive batch of chicken. I cleaned the kitchen, vacuumed the house, fed the cat, placed a food order, caught up with paperwork. I was dying inside but there was no alternative. After that, I collapsed.

I’ve learned to get one step ahead of a relapse. I hate being inactive on the sofa ( I hate my sofa so much it’s unreal). But I know it has to happen, no matter how much it kills me. I think if I can do everything possible, I will guarantee I’ll be able cope if something even worse happens in the next few days. It’s the ‘Single Parent With MS’ Dilemma. But at least the laundry’s done, and the t-shirt that makes The Teenager’s muscles really stand out is fresh and ready to wear. It’s priorities.

Back to the gravel. I lay stunned. The boss shouted down to me from the roof he was working from. My body had taken a huge whack and the pain was immense.

I had to get up. And you know what? I did. And for that I will be forever grateful as not all of us with MS could say that. So, as long as I’m able, I will treat relapses with the contempt they deserve.

Been there, done that …

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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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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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