Oct 20 2012
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Emotions

My dad, his MS

My dad died in the 1970’s, aged 35, from complications arising from multiple sclerosis. I was four and a half. I don’t think I remember him, as I find it difficult to distinguish real memories from what I have been told.

Over the years, of course I missed my dad, but was it hard to miss what I had never had in my life? I pieced together his MS progression, picking up hints here and there. Back in the 1970’s, MS was often referred to as ‘creeping paralysis’ and was a deadly diagnosis. MRI scans were not actively used until at least the 1980’s, there were no disease modifying drugs and people like my dad were routinely written off and sent home to cope as best they could with what little they had.

I recently heard that my mum had invested her meagre savings into buying a serum from the Eastern-bloc, which would apparently halt, then reverse my dad’s symptoms. She paid a dubious middle man and her money, and the serum,  were never seen again.

Now I have MS, confirmed through two MRI’s, showing the progression of my illness in devastating detail. I have my pick of drugs. I have a whole MS team behind me and have been assigned a neurologist and MS nurse. There is physiotherapy, yoga, counselling and an incontinence nurse if I need her plus a whole raft of support groups and forums. Do I feel lucky?

Yes, of course I do. I was fortunate enough to be born into an era of medical expansion and discovery. Hopefully we will have a cure for MS within a decade. Whilst I was going through the diagnostic process – a tedious, frustrating, point-ticking process – I put a photo of my dad on my kitchen windowsill so I could see him every morning. ‘Thanks, dad’, I would say as I put the radio on. Of all the things you could leave me with, you had to pass on this. Cracking legacy. I was angry, furious.

In a strange way though, having MS made me feel much closer to my dad. With every new symptom – and there were many – I would align myself with him. Did he have this, did he have that? I felt as if we could have been kindred spirits. I may have his eyes, his mannerisms, his fearlessness, but that is only what I hear, what I have been told by other people. Now, I have something I know he experienced.

Is that odd? I hope that I can take every opportunity going, as my dad did not have the chance, or lifespan, to do so. If I can somehow honour his memory in this way, then I will do everything I can to do just that.

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Oct 19 2012
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Symptoms and Treatment

Dodgy Hands and Wonky Feet

dodgy hands and wonky feetI have been bouncing off the walls the last couple of days. Quite literally. It started in work, where I walked into the kitchen door three times. Just for good measure, my hands have decided to suddenly let go of things at random or not grasp them at all and my feet aren’t working properly.

I had a day off work yesterday, but rather than hiding away with Jeremy Kyle and the Loose Women, I pushed myself out the house and went off for some retail therapy and a determination not to let the symptoms get the better of me. Bad idea?

It started so well. I navigated the supermarket, dodging the Jenga towers of Christmas chocolate tins and super-value loo roll packs. Went to pick up my newspaper and failed four times. Looking around me, I pretended I meant to do it, undecided as I surely was about which paper to choose. Think it worked. Got to the checkout where the terminally bored girl sighed loudly as I fumbled with my purse. And fumbled. Couldn’t open the darn zip or find my loyalty card.

Leaving with a heavy bag of shopping, I stumbled, knocked into the automatic doors and dropped my keys. Undefeated, and after being helped by the Big Issue seller standing outside, I made my way to the coffee shop. Deep breath. Order a coffee and a poppy seed cake for being so brave. Turn round with my tray, shopping bag heaved onto my shoulder. I can definitely do this. But somehow, within five minutes, a three-prams-and-a-double-buggy assault course had formed behind me. And the table I wanted was past them. Ok. Co-ordinate feet, hold on to the tray very, very tightly and do not bounce off the cake cabinet.

I must have looked distinctly demented and the mothers gripped their pram handles a little tighter. But I made it. I ate my cake, drank my coffee and watched the world go by. And when I got up to leave, I didn’t knock anything off the table or drop my bags. But someone had definitely moved the door….

 

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Oct 18 2012
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Daily Life

Hallowe’en Is Coming

I know it’s a bit early but I adore Hallowe’en. I used to love cutting witch shapes out of black card and making ghosts from scrunched-up toilet roll with The Teenager when he was younger. But I especially loved carving a pumpkin, cutting out a lopsided evil grin and having it lit all evening until it started to smoulder.

We didn’t really ‘do’ Hallowe’en as kids. I used to have a Canadian penfriend and I was puzzled when she sent me a Hallowe’en card, so much so that I took it into school the next day where it was handed round with reverence and wonder.

Now The Teenager is way beyond Hallowe’en crafts, laughs at my Happy Hallowe’en wreath and would be seriously worried if he caught me making those ghosts and witches, just for old times sake.

I am determined to keep up my pumpkin tradition no matter what The Teenager says, so yesterday I bought one, lugged it home and looked up pumpkin pie recipes. I do this every year and every year I look at the pile of gunk I’ve just scooped from the pumpkin then sweep it all into the food recycling bin, vowing to do it next year. Promise. A few years ago a yummy-mummy friend of mine separated and dried out all the pumpkin seeds in the oven, then sat down and made a necklace out of them with her daughter during their ‘mummy and me’ time. We are no longer friends, the pressure was too much.

Anyway, the pumpkin is finished. It’s not artistic, more deliberately naiive for that authentic, child-in-the-house look. Can’t be seen to be taking it too seriously. And The Teenager has just told me he is going out trick or treating. I tried to tell him he might come across as quite threatening, being  six feet tall, but I was just talking to the hand…

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Oct 17 2012
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Work and Studying

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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Oct 16 2012
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Media

Pink With Envy?

I am loathe to admit it, but I used to be envious of the publicity given to breast cancer awareness – the girly sponsored walks, the dizzying range of pink goods flooding the shops every October and the endless celebrity endorsements. By comparison, multiple sclerosis seems a very poor cousin indeed.

Would it be easier for me, and society as a whole, to accept my multiple sclerosis if it was dressed up in loving, pink fluffiness? Or if I knew that thousands and thousands of strangers were doing their bit for a charity that would benefit me?

Yet, people are now starting to question the dubious ways in which very tenuously-linked items are being marketed to raise money for breast cancer. Recent examples include a Pink Ribbon Barbie, pink hair straighteners and a pink Makita drill, and this is only the tip of the iceberg. Are we now reaching pink overkill?

It is a contentious subject. If vast sums of money are generated and donated to search for a cure and fund services, who can grumble that it is all a bit too much and even a little tasteless.

Perhaps though,  by thrusting such private, personal ‘battles’ with breast cancer into the glare of publicity, this somehow demeans and cheapens individual experiences of the illness. Would I want to be implored to stand up, fight back, remain positive and all the other mantras by people who have no idea what it’s really like – probably not.

There is a fascinating article in the Daily Mail about this subject – have a read, it’s eye-opening…

http://www.dailymail.co.uk/femail/article-2217678/How-big-business-cashes-breast-cancer-Junk-food-Barbie-dolls-power-tools-jumping-months-pink-ribbon-bandwagon.html

 

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