Tag Archives: Alemtuzumab

Mar 01 2013
20 Comments
Work and Studying

I Fought Back…And Won

Actually, I canI was sacked from my job last October for having MS, preceded by a vicious campaign of bullying and harrassment which almost drove me over the edge. At the same time, I was struggling to cope with my diagnosis and had also just been through Alemtuzumab treatment in the summer.

The day I was sacked,  I went home in shock. I was at my lowest ebb. The drip-drip effect of the bullying had left me sapped of confidence, drained of energy and incapable of any positive thinking. The sacking was the culmination of a truly horrific year. How anyone can bully a person going through a diganosis of MS is beyond me and the cruelty of it still astounds me.

I decided to accept my fate and leave it at that. But then I got angry, then furious. Was I really just going to walk away? Luckily, I still had one tiny scrap of fight left in me and so began a long legal process.

I am over the moon to report that I have now won my case. The matter is settled and it is time to move on, with my dignity and pride restored.

Bullying at work can be insidious. It is not always immediately obvious. It can start insignificantly and like an abusive partner, can slowly erode your confidence, your judgement and your rational thinking. When the bullying then escalates, you feel too undermined and isolated to fight back.

Bullying someone with MS (or any other serious illness) is cowardly. The bullying may come from a position of strength, from their status in work, but it is only carried out by weak people who take delight in hurting others who are already in pain.

I have fought a long, exhausting battle and was close to giving up along the way, such was the hold these people still had over me in my mind. It’s only thanks to family, friends, fellow MSers and a fabulous lawyer that I got to this point.

If you are in the same position I was, don’t accept it. You are worth more than that. Keep notes of every incident no matter how small, every date. Surround yourself  with a strong network and most importantly, realise that it is not your fault.

It’s a beautiful feeling to wake up every morning knowing I am no longer bullied. I am a worthy person and I will go on to better things. As they say, success is the best revenge.

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Feb 21 2013
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Symptoms and Treatment

Hospital Bed Booked…

I had a letter a couple of days ago confirming that I’ve been booked in to hospital for my follow-up Alemtuzumab treatment in July. Last year I was in for five days and four nights.

This year, only three days and two nights. Looking back on it, I was a complete hospital novice. So here’s my list of what I will be doing differently this time around:

  • Pack my own pillows. The hospital ones (if you are lucky enough to get one) are super-thin slices of foam. And that’s being generous.
  • I won’t be taking a huge pile of books. I ended up reading only newspapers and trashy magazines, but I did learn a lot about Heidi and Spencer Pratt’s marriage and Cheryl Cole’s beauty routine.
  • Staying overnight in a Neuro Day Unit means you have absolutely no privacy all day. People come and go for tests and treatments, usually bringing a bunch of family members with them. It’s like having a whole load of strangers parading through your bedroom. Must also remember to lie when people ask me if lumbar punctures hurt (they do, I was a screaming banshee).
  • Cannulas hurt like hell too and it stays in the whole time. Must get it strapped up when not in use as do not want to recreate the Psycho shower scene like last year.
  • Much as I loved the regular tea trolley trundling around at all hours, it tastes awful. Will make regular trips downstairs for the hard stuff.
  • Accept all the sleeping tablets I can get my hands on – hospital beds are uncomfortable, some lights stay on all night and there’s strange people wailing down the corridor.

I will be a calm, confident patient. I know the score this time round. Still a sobering experience though, when the reality of MS really kicks in, far more than just putting up with symptoms on a day to day basis. This is real. The doctor says so.

So when everyone else is packing for a week in the sun, spare a thought for me as I pack my pyjamas, fluffy slippers and selection of snacks to munch on (Jelly Babies, dried banana slices and cookies). God knows what I’ll look like walking through the hospital corridors on my way to book in, struggling with a huge bag and two pillows under my arm.

One other point – do hospitals have wi-fi? How will I stay up to date with my blog and Twitter??

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Jan 25 2013
14 Comments
Emotions

The Joy of Simple Things

I am surprised to find myself writing this, but there is a lovely, positive side effect of living with MS. Honestly! Of course, it goes without saying this is apart from being in touch with all the fabulous MSers I’ve met through meetings, Twitter and the blog.

I wandered round my favourite charity shop yesterday and picked up a whole pile of books. Regular readers will know I adore reading and am in the middle of setting up an MS book club – Reading Between the Wines. So I took them home, stacked them neatly on my bedside table and sighed, blissfully. So many books to read. It only cost me a few quid, but put a huge smile on my face.

This got me thinking. Pre-MS, my focus was wide and long-term. I would plan my career, The Teenager’s education and hobbies, my studies, my ambitions, my fears, etc. Unwittingly though, I skipped over all the small things that make life so pleasurable and worthwhile. Now, even though I still plan long-term, MS has also narrowed my focus in unexpected ways.

It started with the daily grind of getting through each new relapse. Life suddenly zoomed down to whether or not I could get off the sofa. Anything else was incidental. Would I be able to walk down the street without tripping? Would I be able to cook dinner? Could I manage to put the bins out?

But then something strange happened. Every time I was able to do something small, I felt a huge sense of achievement. Which is rather sad, as often it was only something as simple as making beans on toast, or navigating a wonky trolley round the supermarket. But I still celebrated the small stuff.

Since Alemtuzumab treatment, my relapses have stopped (touch wood). I still have bad days, sure. But what this focus on the small things has left me with is an almost childlike appreciation of things I long took for granted – coffee and a catch up with a friend, reading the Sunday papers from cover to cover, walking in the snow, fixing the mould in the bathroom.

My life has changed for ever, and however cliched it sounds, I really do now focus on what I can do rather than lament over things I am no longer able to do. So thank you, MS, and I really do mean that.

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Jan 16 2013
20 Comments
Symptoms and Treatment

Eye See

Every morning when I wake up, I’m temporarily half-blind in one eye for around a minute until it clears. It’s not painful, just annoying and tricky when I’m already slightly unbalanced on my feet when I first get out of bed. This has been going on for a while now and I’m starting to get worried.

I’ve avoided asking for advice about this as I don’t think I want to know, if that makes sense. Is it another symptom of MS or something completely unrelated? Unlike a lot of people with MS, I have never had optic neuritis or other eye problems and have always prided myself on having near-perfect sight.

I also don’t want to look like a hypochondriac and unfortunately MS can make us feel that way. There are just so many endless symptoms and odd things that can happen. I don’t think I have ever analysed my health in quite so much detail before. I bore my friends and I bore myself and it makes me feel old before my time.

To be honest, since the Alemtuzumab treatment, I have been lucky not to have had another relapse, so all the health problems I have at the moment are minor. The big problem happens when I have several of them on one day. Unsteady balance is fine on its own, but throw in fatigue, twitching and a numb arm and it can be pretty grim.

Anyway, enough of the boring stuff. I am off on a work field-trip tomorrow,so a nice easy day for me. We’re driving 40 miles out to a site where the boss might be contracted to do a lot of the building work with a team of labourers. Obviously if he gets the job, I won’t be commuting there every day, so I will be nice and warm at home, sourcing materials online and perhaps popping down once a week to check everything is running to schedule.

I’ve also got my monthly Alemtuzumab blood test this week, so maybe I will bring up my wonky eye. And pray they don’t think I’m just another hypochondriac….

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Jan 01 2013
2 Comments
Daily Life

Happy New Year!

At last, we’ve made it. We weren’t wiped out in a Mayan apocalypse and we survived the forced jollity of New Years Eve. The discarded party hats, party poppers and champagne corks will soon be swept up and a new year begins. So what are my resolutions for 2013?

Normally, I’m the same as everyone else – lose weight, eat more healthily, take up exercise, yada yada yada. By the 10th of January, I’m back on the sofa, cramming popcorn in my mouth  and channel surfing.

My brand new shiny trainers remain brand new and shiny and I refuse to take part in the ritual humiliation of the weigh-in at Slimming World. The last time I joined that club, I celebrated losing a pound by popping into the pub with friends on the way home for a white wine spritzer and a bag of crisps.

This year will be different. I am going to set reasonable, achievable goals:

  • Try something new every day – even if it is just buying a different newspaper or changing my coffee order. I need to shake up my routine a little, so small steps.
  • Take up 10 minutes of exercise a day – a quick walk round the block rather than an intensive, army-like regime which I would give up within two days.
  • Start our MS book club – Reading Between the Wines.
  • Finish my degree course, with honours. I’ve come this far, I won’t give up now.
  • Keep blogging every day apart from Silent Sundays – it keeps me sane…
Will I stick to them? I really, really hope so. For the last year or so, my life has been dominated by events out of my control, but hopefully with the Alemtuzumab treatment and a fantastic MS team at hospital, the MS monster is being tamed.
So, Happy New Year everyone. I love reading your feedback and comments and they all make blogging so much more worthwhile. Let’s start the year as we mean to go on!

 

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