Category Archives: Symptoms and Treatment

Jul 11 2016
12 Comments
Symptoms and Treatment

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 …

Tagged , , , , , , ,
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.

Tagged , , , , ,
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.

Tagged , , , ,
Apr 25 2016
4 Comments
Symptoms and Treatment

Take Control, Know Your Choices

1MSg logoThis week is MS Awareness Week and a campaign is aiming to reach the one in five people with multiple sclerosis who are not in contact with specialist services

A multiple sclerosis (MS) awareness campaign, called 1MSg, has launched recently urging people with the condition to ‘Take Control, Know Your Choices’.

The campaign, funded by Biogen and developed alongside clinical experts, comes in response to research which highlights the need for patients to regularly engage with MS-specialist services.

Previous research conducted by the MS Trust, found that nearly a fifth of people with MS had seen neither an MS-specialist nurse (MSSN) or a neurologist in the past year, and so will not have received the comprehensive annual review recommended by the National Institute for Health and Care Excellence (NICE). In addition to this are those patients not currently known to MS-specialists due to not being in contact, those ‘lost to follow-up’.

To help address this issue, the 1MSg campaign highlight the benefits of regular and quality engagement with MS-specialists in order to ensure that people are making informed decisions about their disease management based on the latest information, under the guidance of experts.

The progression of MS can be unpredictable and can vary from individual-to-individual, and therefore monitoring is important.

Dr Martin Duddy, a Consultant Neurologist specialising in MS, said: “I’m supporting the 1MSg campaign because I believe that there are people in the UK living with MS who are not seeing an MS doctor or MS nurse regularly, and who would benefit if they did. The way we manage the condition has changed a great deal. This includes the support services we offer, how we control or treat symptoms, how much we understand about the disease and its progression through technology such as MRI, and what we’re able to offer in terms of treatments to help alter the course of the disease.

The advent of DMTs, I think, has induced a lot of hope in people with MS. In the medium-term, within the UK, we’ve been collecting evidence on whether we see a disability reduction and that is coming through at six and eight years now that people who are on the drugs are not as disabled as they would have been if they hadn’t taken them.

We’re looking long-term, and worldwide, to collect better information about the 10, 20, 30 year outlook, but the first principles in science and some of the early data would suggest that treating the disease actively at an early stage does prevent some of the later disability, so I want to encourage all people living with MS to regularly see a member of their local MS team.”

To learn more, visit www.1msg.co.uk where you can access a wealth of information and hear advice from healthcare professionals, including Dr Christian Jessen, about the importance of engaging with MS-specialist services. You can also watch a video explaining more here.

Tagged , , , , ,
Mar 27 2016
8 Comments
Symptoms and Treatment

Yes, Of Course, MS, Whatever You Say …

yodaI had plans. Lots of them.

As The Teenager was away in London with his dad, I had a whole list of things I would do.

I forget to factor in MS.

This morning I woke up at 7am. I stretched, inadvertently kicked the cat off the bed and felt smug that I had slept in. Until I realised the clocks had gone forward, and it was technically 6am. Gah.

I got up, made a coffee and consulted my list:

  • Sort out all those thin clothes I will never have a hope of fitting in to.
  • Sort charity bags.
  • Hang pictures.
  • Clean bathroom.
  • Shred bank statements.
  • Tidy up back yard.

But then, just  as I was feeling human, MS took me by the shoulders and steered me to the sofa.

Erm, ok. So, if I just close my eyes for a few minutes, I’ll be fine again?

Three hours later I woke up. Three hours.

I am exhausted, MS fatigue is driving me crazy.

I am wading through cotton wool. I knew it would happen at some point … I just wasn’t ready.

So now the MS monster is back.

It’s shoving me in to walls, pushing me into corners and making me walk funny. Even talking is an effort.

I’m a wreck, but a wreck who has to keep on going.

Tagged , ,
← Older posts
Newer posts →