Sep 07 2013
8 Comments
The Teenager

Saved By The Bell

back to schoolThis has been a sad, sad week. The Teenager went back to school on Wednesday and I’m still wiping away the tears, getting used to rattling around an empty house with only Jeremy Kyle for company.

There is so much I will miss:

  • The feeling of lightness in my wallet. It will take a bit of adjusting to not having to dig deep every single day. Money for the cinema and lunch in town with friends for him, beans on toast and ‘Cash In The Attic’ with the cat for me.
  • Telling the Teenager for the umpteenth time, ‘In my day, we….(insert one of the following – ‘didn’t have the internet’, ‘made our own fun out of tin cans and bits of string’, ‘walked everywhere’).
  • The loud music blasting from his bedroom when I’m trying to have a quick shut-eye. Everything from Nirvana to the Beach Boys to new stuff I’m far too old to know the names of. He’s nothing if not eclectic.
  • The drama involved in buying a new school uniform. Will particularly miss the slammed bedroom doors, followed by shouts of ‘s’not fair, hate school, stoopid Harry Potter blazer.’
  • Ditto School Shoe Shopping (SSS). I’m sure the lovely lady who helped us really didn’t mind bringing out so many boxes of shoes to a Kevin The Teenager lookalike. She did look awfully happy/relieved when we left though.
  • The friends who pop over to see The Teenager for an hour and end up staying all day. Such dear, funny little people. Not at all loud.
  • The chainsaw snores from The Teenager’s bedroom as he has yet another lie-in.

So, forgive me if I’m a touch emotional. I have dug out all the old photographs of his first day at school, stretching back years. They range from the impossibly cute, smiley 4 year old to the one last year, where I had to bribe him with an extra quid for lunch. He’s slouched, unsmiling, barely looking at the camera. Sigh. This year, in his smart new blazer, his photo was more like a mugshot for junior Crimewatch.

Anyway, I have to pull myself together and not feel too despondent. As The Teenager couldn’t wait to tell me yesterday, it’s only six weeks to half-term. Like, yay.

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Sep 05 2013
14 Comments
Blogging

Stumbling Off To Parliament

stumbling off to parliamentI had an interesting email the other day inviting me to attend an event at the Houses of Parliament to find out more about Lord Saatchi’s Medical Innovation Bill.

The event is aimed at ‘leading bloggers and You Tubers’ (their words, not mine, and I now have a very big head), and will explain how social media can be used to put the power of the Bill into the hands of patients.

The Medical Innovation Bill is intriguing, originating from Lord Saatchi’s devastation after his wife, the novelist Josephine Hart, died of ovarian cancer in 2011. The Bill is designed to help doctors innovate and find new ways of treating disease, specifically cancer. Currently, the fear of litigation is holding these doctors back, forcing them to follow well-trodden paths of standard procedure.

The Bill has support from many leading doctors and scientists across the country. It has also been tested on some of the UK’s most senior legal experts, and they have stated that they understand the need for legal clarity in cases where doctors seek to innovate – and that this Bill provides that clarity. This Bill will therefore support sensible innovation, while protecting patients.

Although aimed primarily at people with cancer and the doctors who treat them, could this Bill potentially mean anything for people with MS and their treatment? Although we are not suffering from a life-threatening disease as such, we’ll still be living with it our entire lives. Is there room for innovation in the treatment of MS?

Before the event this Monday, I would really like to find out what you think. How can we open this debate up to include MS? Do you think this Bill will make any difference if it is passed? Hopefully I will have a chance to ask Lord Saatchi a question or two – if you have any ideas please let me know.

For more information, check out these two articles below:

The fear of being sued is ruining modern medicine

Innovation excellence

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Sep 03 2013
9 Comments
Blogging

Dating. With MS.

GoslingSimone from Manchester is my guest blogger today – she’s just started blogging, so check it out here. She was diagnosed with MS in 2006:

Without boring you with details of my diagnosis, aged 30, steady relationship, wedding planned; I then found myself diagnosed and single aged 30 and 2 months. Those last two months were only because it took 6 weeks to track him down after he Usain Bolted away from the neurologist’s consulting room.

So, on top of the regime of injections, aches, needles, bladder nonsense, constant terror at an uncertain future – I also had to get back on my bike and ‘try to find a boyfriend’. *

After 2 years, hiding in my house, holding on tight as I held it together; persuasion from well-meaning friends persuaded me to date online to seek my Manchester Ryan Gosling who would be able to see past those two hated capitalised letters and see me. Guardian Soulmates seemed the place to start. Surely the men on there were pretty tolerant? They all said they were and had endless photos of themselves cuddling chimps and demonstrating kayaking heroics.

Reader, I have not the time to tell you about the horrors I endured. The sociopathic Greg Rusedski lookalike OR the mountain climbing freak who listened with tears in his eyes as I told him of my MS, then MADE me climb Mount Snowden ‘to prove to myself that the MS was no barrier’ and then dumped me the next day as he couldn’t face the prospect of spending his later life as a carer…

I decided that this woman could take no more. I would buy a cat (or rather, an animal with no fur due to allergies); I would stoically face my future alone. Then I received the email in my Soulmates inbox – ‘Mark is interested’. It is a truth universally acknowledged that a single individual in possession of an online dating subscription must be in want of a new message. So I replied and we wrote to each other and he was a journalist – light and funny and clever and articulate. I hadn’t told him about my diagnosis but there was time yet and so we met up.

After an odd evening with a morose, half-drunk man, we reached 9pm, by which point he was looking mournfully into his ale and I was imagining what kind of turtle I would buy for company and whether it would cuddle me on winter nights.

I said, ‘Look, this isn’t working, is it – I”m going home.’

He grabbed my arm with tears in his eyes and then said, ‘you’d never be interested if you knew.’

‘Knew what?’ I almost shouted, trying to free my arm and also catch the attention of a member of bar staff.

‘I have MS’ he half shouted/half sobbed.

‘So do I’ – I said quietly.

I took my coat off and we talked non-stop for a further 4 hours.

Dating with MS is hard and complex and awkward and requires honesty, trust and bravery. However, there are moments that make you realise that we’re all dealing with our own crap and it is whether you are willing to start a journey with someone who brings an unwelcome companion to your new relationship.

Incidentally, the journalist guy was definitely NOT worth starting a journey with. Nothing to do with the MS, he was just a self-important heavy drinker with two over-indulged, long-haired cats.

*Mum’s advice every time we talked, for about two years…

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Sep 01 2013
40 Comments
Symptoms and Treatment

The Mallet Theory

the mallet theory 2When I first mentioned my Mallet Theory in a previous post, it drew a great response from you guys, so here is the full, unabridged version.

Ok, so most of us have heard about the Spoon Theory, and whilst I like it, I find it a little bit…..gentle? Spoons are such handy little things. Unoffensive.

You explain to your friends and family that with MS, you have a set amount of energy in one day, represented by a number of spoons, and you give one or more away depending upon how much energy you’ve used. When they’re gone, they’re gone.

Me? I prefer the Mallet Theory. MS fatigue isn’t gentle. It’s a whack across the head by a mind-numbing, poleaxing, utterly devastating Mallet of Fatigue. So, say you start the day with ten mallets. You chuck one away (if you have the energy) every time you feel this crushing tiredness and if you’re left with any at the end of the day, it’s been a good one.

Unfortunately, you can’t carry any over into the next day. MS is cunning like that – you start each day right back at the beginning. There’s no saving them up, which is kind of hard to explain to other people. They might helpfully suggest, ‘oh, if you have a sleep now, you can go out later.’ You don’t get to choose when to sleep, you’re compelled to. I’ve had mornings when I wake up bright and breezy at 7am, and am zonked out on my sofa by 10am.

I’d like to expand this theory by allowing people with MS a second set of mallets per day, and here’s where it gets exciting. This second set can be used for when people say something totally ridiculous to you. Something along the lines of , ‘you’re still drinking Diet Coke? Don’t you know that probably caused your MS?’ or ‘wish I could sleep as much as you’. Yeah, right. Have this mallet over your head, you annoying person, you.

Obviously I’m not advocating actual violence, no matter how much you may be tempted. This is purely metaphorical. Since incorporating this theory into my life, I’ve had hours of fun. So, pass the theory on – anything to do with MS that can raise a smile can’t be bad.

 

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Aug 30 2013
14 Comments
Emotions

At First I Was Afraid, I Was Petrified…

one tough cookieOn Wednesday, I had an appointment with my MS nurse to discuss how the latest round of Campath had gone.

I had a good chat, did a blood test, made a new appointment for next February and left, happy and relaxed. I’d reached a significant milestone.

This was probably the first MS appointment where the staff haven’t had to virtually prise my fingers from the reception desk and tell me to go home, everything will be fine. I always had just one more question, one more point to raise. I could quite happily have set up camp in the waiting room.

At my very first appointment with the neurologist, I left confused and with a head full of unfamiliar medical terminology, stunned that something so potentially huge could be on the horizon. I wanted to stay in that room forever, boring him to tears as I struggled to make sense of what he was telling me. At appointments with the MS nurses, there was a sense of comfort and safety as I sat in their room, emotions never far from the surface.

Having been thrust into an unfamiliar environment, I very quickly didn’t want to leave. The MS team had an answer to everything. If I could have taken an MS nurse home, I would have. The whole MS diagnostic process probably doesn’t help. Who knew it can take so long? Who, outside of the MS world has an idea what the McDonald criteria is, what oligoclonal bands are?

Not only that, there is the sense that your own world will never be the same. How do you tell your family? How can you cope once you start being bullied at work due to your diagnosis? How bad was my health going to get? The MS team helped me through it all. I was given access to a vast array of support, equipping me to become my own expert of my MS.

It’s been a long two years. When I look back to those frightening early days, I marvel at how far I have come. I’m still me, I just happen to have MS, and I now know exactly how to live with it.

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