Tag Archives: diagnosed

Happy Anniversary, MS (you suck)

cream pie on faceHey, MS, Happy 6 Month Anniversary! After a year of hell, I was officially diagnosed on 25th May. I don’t need to tell most of you how horrendous the diagnostic process can be, suffice to say I am overjoyed never, ever to have to go through a lumbar puncture again. Have you seen those needles?

Having MS sweep into your life is like having an ugly, unwanted house-guest move in with two huge suitcases and the kitchen sink. For ever. No matter how much you try to get on with life, work around them and keep ignoring them in the hope they will go away, they stick around.

Not content with that, they inflict pain on you mercilessly in unexpected ways, physically, mentally and emotionally. They rack up extra costs, they stop you going out as much as before and they chuck out your high heels (that was a cheap, low shot, MS). They rob you of your health, your confidence and your zest. They frighten your family and taunt you about your diminishing prospects.

If MS were a person, they’d be arrested and banged up for life.

So how do I feel, six months on? The absolute permanence of MS horrifies me. It will never go away. The progression of it, too,  is something I tuck away in the furthest reaches of my mind, only to be thought about in very dark moments. I hate the constant fear, the gnawing anxiety of a relapse just around the corner. I hate the way MS has shaken my life so completely to its foundations that nothing is the same as before.

I know, I need to embrace this illness. I should accept that MS is now indelibly imprinted on my life. I need to Think Positive! Meditate, do yoga, give up the sweets, the alcohol, the stress. Don’t we all? If pushed, I would say that the one thing MS has given me is the ability to appreciate things more. Not in a hippy-dippy, mung-bean eating way – just enjoying small pockets of time when everything is ok, I don’t take so much for granted now.

I am still debating whether to get a tattoo, to mark this little anniversary. Something small, just between me and MS. I want a barcode, with the words, Best Before 25/05/12. Or should that be Best After…?


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Magical Alemtuzumab

The day I was diagnosed with MS, my neurologist told me that mine was the highly-active or rapidly-evolving sort. I had two choices. The usual disease modifying drugs or Alemtuzumab (Campath). It’s a drug used to treat leukaemia, and in laywoman’s terms, it strips out your immune system, killing the T-cells involved in the MS immune response.

There’s some pretty serious side-effects including a 1 in 3 chance of developing a thyroid problem, but it can halt the progression of MS for at least 10 years by reducing the number of relapses. A no-brainer for me – I was having relapse after relapse with barely time to catch my breath inbetween. It was like being thrown against a wall repeatedly. My body was battered and bruised, I couldn’t walk properly, I slept all the time and fell over a lot.

So, it was an easy choice and I know just how fortunate I was. I was lucky to be under a hospital which took part in the trials. It is still unlicensed for use with MS, but was given to me on a ‘compassionate basis’. All I wanted was to be able to see The Teenager off to university in a couple of years. I didn’t want him to be my carer, or to always be too tired to take him anywhere.

After five days in hospital, hooked  up to an IV, pumped full of chemicals and steroids, I was back home without an immune system for the next few weeks. Now, four months on, a miracle has taken place. I still get tired but I don’t need to sleep the afternoon away, I haven’t fallen over, I can walk (stumble) far better than before and I just generally feel, well, normal(ish) again. I haven’t had a relapse…yet. Touch wood. Don’t walk on cracks on the pavement. I still have a whole bag of symptoms, just not all at once.

So why am I angry? Well, the makers of this wonder-drug have withdrawn it from market, in a bid to relaunch it as an MS-drug and will price it out the reach of most health authorities. Big Pharma strikes again…..

Read Sian’s brilliant blog for more information – she’s pretty angry too.

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The End of the Beginning

I think I reached my lowest ebb yesterday, and when you’ve hit rock bottom, the only way is up.

I am going to be more proactive rather than reactive. I don’t have a daily routine any more, so I will have to create my own one. As Jan pointed out in a comment to yesterday’s post, these couple of months are a great opportunity to review my life and see which direction I want to take. When your whole life is smashed to pieces in a year – from a diagnosis of multiple sclerosis, to bullying to being sacked from work – it’s a rare chance to re-build it, just the way you want.

So, I am going to regard today as the start of the next chapter. Yesterday marked the end of the beginning. On the plus side, I have two months work, I am away from a toxic office, I will no longer be bullied and they made a huge, massive mistake in sacking me the way they did. On the down side. Hmm……absolutely nothing. I can’t think of one thing.

There doesn’t seem much point stressing any more about the MS. Stressing will only make it worse anyway. There’s not a thing I can do to change it. What I need to do though is have some space to come to terms with it, but that’s kind of on hold right now. And that’s fine.

Autumn is a time of renewal. So I have decided to be a tree, shedding all the old leaves and generating new shoots, ready for next year. And if that sounds odd, it’s probably because I am working from home, all by myself, with only the cat for company. And we have great conversations…


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Just Hook Me Up

I am living on coffee and stress so why am I putting on weight? I want to be one of these people who sheds pounds when they’re dashing around like a demented chicken, pumped up with stress and an unfair dismissal.

My mind is racing, but it seems my body isn’t. It’s just over a week since I was sacked for having MS. There is too much to do, apart from the everyday routine, the Christmas planning, the taxi service for The Teenager. Throw in all the ubiquitous health appointments, blood tests, a newly-diagnosed day and a fatigue management course and I’m up against it.

So the thought of launching a legal case is filling me with fear, and coffee. I (think) I am a nice person. I don’t like fighting. At school, I gave my lunch money to the bullies without a word. But this scenario, the one I am facing right now, is out of my league.

The bullying in work was horrendous enough. A year of loathing myself for not standing up to them, whilst battling to come to terms with my diagnosis and what it means for my future. Perhaps there is a tipping point. By dismissing me on the spot, expecting me to clear my desk and leave straight away has made me angry. I would hate myself more for walking away.

What have I got to lose? I have had incredible support. My healthcare professionals have risen up in outrage and anger, my friends have rallied round and my forum buddies have carried me along on a wave of advice and soothing words. One of them pointed out that I would only ever have to do this once. Excellent point.

I have to do this.

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Stockholm Syndrome

bullying in workplaceThe end could be in sight – I had a second, very successful job interview yesterday and I can almost taste freedom. For my sanity, I need to get out of my current job.

Until recently, I had never experienced workplace bullying. When I informed my colleagues about my MS, I didn’t expect kid glove treatment or special measures, just a little understanding. I was completely unprepared for what happened next.

Bit by bit my duties were stripped from me. I was told that I could no longer drive for work, cutting me off from a large percentage of what my job actually entails. I was studiously ignored and excluded, most of my projects were shelved and backs were literally turned. Schoolgirl sniggers might sound harmless , but when executed effectively, they can be brutal.

In the blink of a diagnosis, I have been branded worthless, a waste of company resources and deemed less intelligent than before. Yet the only tangible change is that I chose to reduce my working hours (due to extreme fatigue), so that when I was in work, I could be as effective, if not more, than before.

What angers me most though, is that their callous and cruel actions have robbed me of the mental clarity needed to adjust to my diagnosis. I have been fighting a war on two fronts and it is clear they are hoping to make my life so unbearable that I will have no choice but to leave.

So why, on the threshold of a brighter future, do I feel nostalgic? Have I come to love my tormentors as a way of coping with the ongoing ordeal? I think I have had to believe that deep down, they are decent people, in order to force myself out of the house each morning. Or perhaps it is just sadness, for never being allowed to reach my full potential.

In the meantime, as I wait for good news, I will cheer myself up by reading our company policy on ‘Bullying and Harassment in the Workplace’. It’s by far the best work of fiction I have read in a long time…

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