what difference does it make?

In case you hadn't got the gist by now, or if you're just passing through, It's MS Week - a chance for the MS Society to get loud about multiple sclerosis, raising awareness of it by reaching out to people who don't know much about it. I've got MS, and I've been talking about it all week. Well, and before that too, and most likely after...but definitely during the week. Anyway. You get the general idea, I'm sure.

After diagnosis, the MS Nurses at QMC became the epicentre of my medical world. They, and not my GP or my neurologist, will be the first people that I should contact about anything to do with my condition; they will be the ones who organise my appointments, arrange my treatment schedule, teach me how to inject myself correctly and generally make sure that I'm okay. The very first thing that happened to me after my neurologist decided to make a diagnosis was that an appointment was made to attend the hospital's MS clinic and to meet an MS Nurse for the first time. As well as talking me through the various treatment options and showing me the various bits of apparatus that come with each one, she gave me a whole pile of literature about the condition. When I attended the Disease Modifying Drug clinic a week later, one of the other MS Nurses helped me select a whole load more. There are all kinds of leaflets: ones that help you understand the drugs you are asked to choose between; ones that help you understand the basics of the condition; ones designed specifically for carers; ones that tell you about the pain associated with MS and the various pain management options available.... all kinds of stuff. There's a whole lot more of this kind of information also freely available on the MS Society website, as well as a whole community on the forums there waiting to offer advice and support. Being diagnosed with MS could potentially have been overwhelming, but the support on offer from the NHS and from the MS Society has been really helpful (I actually emailed the society the other day with a very specific question about the drug I am planning to take, and they mailed me back a couple of days later with a very detailed and specific answer from their researchers... they're a fantastic resource).

In one of the leaflets, there's a section on who you should tell about your diagnosis. Of course, there's no right answer to this question, but it offers up a few things that you should consider. It's an interesting question, and one that has been very much on my mind. Of course, I know that - theoretically speaking - I've already told the whole world about it here.... but although a good number of people I know, friends, family and colleagues alike, occasionally stop by, they're still very much in the minority. My mum and dad know, of course, and I imagine that my two brothers and other family members have heard. I've not specifically mentioned it to my friends, although word has got around and I've had lots of supportive phonecalls and emails and things. Work colleagues are another kettle of fish though. Some of the more interesting sections in the MS Society literature deal with the question of whether or not you need to tell the people you work with. There's no legal obligation, but there are lots of different things to think about: is it something that it might be helpful for a few people there to know? What will I gain by telling them? What will they gain by knowing? I've told a couple of my closest colleagues, and a few other people have probably worked it out on the basis of the various hospital appointments and clinics they know I've attended over the last two years. But everyone else? My condition is not really a secret, but do I really want to advertise the fact to everyone and to take all of the baggage that might come with that?

I need to make up my mind soon. As part of MS Week, it's the MS Society Cake Bake tomorrow. As I'm sure you can guess, the idea of this is to bake some cakes and then sell them to raise some money (and awareness) for the MS Society. C. is a keen baker, and she's got the fundraising pack containing some balloons and a collection box, and she's busily baking so that she can take a whole pile of home baked goodness into the office tomorrow to raise some money. She's going to give me a cake too so that I can do the same. It's brilliant, but it begs the question of whether I should tell people in the office what it's all in aid of, and why we're so personally interested in the cause. I don't have to, obviously, but I think I'm going to. It's not a secret and it's not something I'm ashamed of. Why should I hide it?

I face a similar decision around the half-marathon too. The MS Society are going to send us a fund raising pack and the famous orange running vests, and I'm planning to set up a Just Giving page so that the two of us can raise money for the charity together. Together with a picture of the pair of us in the Society's running vests on the homepage, should I also say on that page why we're doing what we're doing? I don't have to, but I think I want to. It's an act that will probably have consequences in the way that people see me, but then again, why hide it? You never know - it might even help a few people to understand multiple sclerosis a bit better too.

What's that worth?



Grace's Story

When Grace Rodgers couldn’t feel the clothes on her body she decided something was wrong and she needed to visit her doctor.

For weeks, she has been experiencing numbness in her hands and feet and a loss of sensation right across her body. Her vision in her left eye was blurred and problematic and gave her cause for concern.

“I visited the doctors and went for some tests but they were unwilling to confirm anything right away. A few months later, whilst I was cooking dinner my eyesight went completely. It was a Sunday night, so on the Monday morning I went back to the doctors and they admitted me to hospital where I stayed in for further tests.”

Only 5 months previously Grace’s sister had died of a stroke and Grace had obvious concern that it was something just as worrying. “When they told me I had MS I felt relieved, at least I knew what it was and I’d be able to continue my life.”

Grace was 37 years old, married with three teenage sons when she received the news she had multiple sclerosis – a condition of the central nervous system which causes the body’s immune system to attack myelin, a substance surrounding nerve fibres, causing confusion and delay in messages from the brain and spine.

MS can cause a variety of symptoms including loss of balance and mobility, extreme fatigue, depression and mood swings. There is currently no cure and few effective treatments, but with the right support and information people can continue their lives.

Now, Grace, age 48 from Belfast, has been chosen as one of the faces for a national campaign to raise awareness of the condition.

“I’m excited to take part in the advert and I’m willing to share my story to help others. For me, taking medical retirement at 37 years of age wasn’t great and my life has gone in a different direction to what I expected, but it’s not the end of the world,” Grace explains.

“I now volunteer a few days a week in the MS Society’s offices in Northern Ireland and it’s something I really enjoy.”

11 years after her diagnosis, Grace mainly experiences problems with her mobility. “I can’t walk far and use a stick almost constantly. If I’m going out I’ll use my scooter and we’ve just had the car adapted so I can drive using hand controls instead of relying on my feet and thankfully, although I still have optic nerve damage, my eyesight has returned to almost normal – I want to remain as independent as possible.”

She explains that the majority of people she meets view MS as a very negative condition. “It annoys me that so many people think you’ll automatically end up using a wheelchair all the time and that the condition will progress rapidly. I might get by using a mixture of my stick and scooter for the rest of my life – none of us know how things will turn out but you must remain positive.”

the future is unwritten....

It's MS Week from 27th April to 3rd May. It's an opportunity to try and raise awareness about a condition that affects some 85,000 people in this country, including me.... so I'm spending all week talking about it. Alright?

I've tried really hard to be positive about my condition. Even before I knew it was multiple sclerosis, when it was still an undiagnosed condition with an unknown prognosis that a friend of mine decided should be called the Weirdy Tingles - the WTs - I've tried not to dwell on what this might be and what it might mean for my future. Perhaps it's a form of self-defence, but I'm a very analytical person and, faced with something like this, I've reverted to type and have steadfastly refused to have an emotional reaction. I know it sometimes sounds like ludicrous stoicism, but I genuinely do not see the point in reacting to something that it is totally outside my control. Whatever I have, however it is going to develop, and whatever it is going to do to me.... what the hell can I do about it? Yes, it is frustrating. Yes, I do worry about what is going to happen and how I'm going to feel tomorrow, next week, next year..... but what would be the point of crying over it?

I am human though, and it is simply impossible not to wonder what my future holds. No matter how rational and analytical I am, I can't stop my mind from wandering. Do you know what worries me? The thought that I might start to lose the use of my legs; that I might have my mobility seriously impaired; that I might be unable to rely on my already weakened arms and shoulders to bear my weight on crutches or to push a wheelchair; that I might end up immobile and unable to take any meaningful exercise.... MS can take away all sorts of things: your eyesight, your sexual function, your ability to think straight... but I'm worried about my mobility, and with every stumble and every fall I take, I worry about it all the more.

But really, even if that is to be my future - and it's far from certain - there's not a damn thing I can do about that now.

Not a damn thing.

I'm not sure that makes it any easier to cope with, but why worry about it?

Why worry?



Ian's Story

Ian had been experiencing a variety of unexplained symptoms for around two years, including a loss of sensation in his legs, difficulties with his balance and an inability to co-ordinate his movements, but when he started experiencing blurred vision in his left eye he decided a trip to the doctors was necessary.

He didn’t know what the symptoms meant, and had certainly never heard of multiple sclerosis (MS), but he thought they must be related to a chemical he was working with in his role as an injection moulding operator at a local factory.

Ian went for tests and an MRI showed lesions on his brain; doctors confirmed he had MS - a condition of the central nervous system which causes the body’s immune system to attack myelin, a substance surrounding nerve fibres, causing confusion and delay in messages from the brain and spine.

MS can cause a variety of symptoms including loss of balance and mobility, extreme fatigue, depression and mood swings. There is currently no cure and few effective treatments, but with the right support and information people can continue their lives.

At the time his diagnosis Ian was 27 and married with two young sons. He’d never heard of the condition but was instantly distressed – presuming it was a serious life-shortening condition.

“I had a complete lack of understanding; I thought my time was up, but of course, it hasn’t been like that at all,” explains Ian.

Now, almost 10 years after his diagnosis, Ian, age 36 from Wales, has been chosen as one of the faces of the MS Society’s new advertising campaign to raise awareness of the condition and its symptoms.

Ian mainly experiences mobility problems and uses a wheelchair much of the time. He made the decision to leave work in 2004 after a series of relapses, bought on by stress, lead him into a spiralling depression. Since then, with access to the right treatments, he has managed to lead a happy, active and independent lifestyle.

“After leaving work I wanted to do something positive, so I went along to my local branch which had just started a drop in. It was great and really opened my eyes to what support was available. I started taking part in disabled sport and now I’m studying holistic therapies at college with the aim of working in reflexology,” explains Ian.

Ian was only too pleased when he was asked to take part in the MS Society’s advertising campaign. He says, “My motto is that ‘I have MS but it doesn’t have me’ – it sounds cheesy I know, but there are many positives to come out of a diagnosis. Media coverage can be negative and that’s scary for people newly diagnosed. I hope my story will show people that MS can be a catalyst for new opportunities and that life doesn’t have to stop when MS starts.”

skip a beat and move with my body....

It's MS Week - a chance for the MS Society to get loud about multiple sclerosis, raising awareness of it by reaching out to people who don't know much about it. I've got MS, and I'm spending all this week talking about the condition and trying to get a bit of exposure to the Society's campaign.

I exercise quite a lot: 6 days out of 7 on most weeks, and more often than not, every single day. I don't run marathons or anything, but I swim a couple of times a week, run in excess of ten miles (in 4 mile chunks, mainly) and I play football once or twice a week. Let's be absolutely clear about one thing: I don't really enjoy taking exercise. I enjoy having done exercise, and I feel fat and lazy if I don't exercise, but it's only on the very rare occasion that I would really, honestly be able to say that I had enjoyed a run. The reason I take so much exercise is for purely defensive reasons: I like my food and I like a drink or two. If I didn't exercise, then I would face the stark choice of either watching what I ate, or simply getting fatter. I choose exercise and eat more or less what I want. There was a time, when I was in my twenties, when I was about five or six stone heavier and was doing very little exercise. I've seen the photos, and I don't want to go back there. Improved diet, exercise and - most importantly - a nasty bout of bacterial food poisoning, soon put paid to that excess weight, and I'm now pretty skinny... but the face that stares back at me from the mirror is not the face of the thin person, and I don't think it ever will be.

The reason I mention this is because, over the last few months, I have found taking exercise to be increasingly difficult. My symptoms started, in August 2005, with a numb hand. That numbness soon spread across my body and down my legs, and in the end I was forced to drop out of the London Triathlon (1500m swim, 40km cycle, 10km run) that I had been training so hard to compete in. My name is on the 2005 event t-shirt, but I was forced to watch as a spectator. I kept running, and soon I began to get used to the loss of sensation and was almost able to put it out of my mind. As time went on though, and as the months turned into years, I began to notice that things were getting harder. The progression of multiple sclerosis is measured by most sufferers by the onset of the relapses that signal the development of another lesion on their central nervous system and a whole new batch of symptoms. I can't honestly say that I have noticed a particularly momentous event that triggers a new set of symptoms, but I have noticed that the symptoms that I already experience have been getting steadily worse for some time, and the little things that I take for granted have been getting harder. I still run, I still swim and I still play football, but all of these things are becoming more difficult. I am slowing down, my balance is starting to go and I'm losing the feeling in my legs and the strength in my arms and shoulders. Only about 20% of MS sufferers actually end up in a wheelchair, and I don't like to dwell on possible futures, but I'd be lying to you if I was to say that I wasn't a little bit worried about where this progression is going to end up.

With those kind of thoughts at the forefront of my mind, I didn't need very much encouragement to come round to the view that starting on a course of disease modifying drugs, to be injected every week into my thigh, was probably a good idea. There's reasonable evidence that starting on beta-interferon will help to slow down the onset of the disease and the progression of my disability. There are some side-effects, but this was good enough for me. My family are worried that I do too much, but I won't feel like MS has really affected my life until it really stops me exercising. Until that time, and no matter how slowly I might have to do it, I'm going to continue running, continue swimming and continue playing football. It's going to take more than an incurable, progressive neurological disease to stop me.

In fact, you know what? If they'll have me, I'm thinking of donning an orange vest and - together with C - running the Robin Hood Half Marathon in September this year to raise money for the MS Society. If we did, would you consider sponsoring us?


Sue's Story

Sue experienced her first symptoms of MS when she was hurriedly planting bulbs in her garden.

“I remember coming inside as it had just started to rain, I was rushing around and my foot went numb. I thought it was odd, but over the next 24 hours the numbness gradually made its way up my leg. I was frustrated – I didn’t have time to be ill, I had a busy job and busy lifestyle and didn’t want to be off work.”

Much to Sue’s dismay, the numbness did not leave and after a trip to the doctor she was rushed straight to hospital with a presumed damaged spine or a possible stroke.

“I had an MRI and a lumbar puncture, which I found to be a most painful procedure, but nothing was confirmed. I felt so useless being in hospital I started helping the nurses make the beds!”

Doctors told Sue she would experience problems with her leg for the next few months, but that she shouldn’t worry too much.

She put the experience behind her and began a new job, but eight months after leaving hospital the numbness in her leg returned. Doctors confirmed almost immediately that Sue had multiple sclerosis – a condition of the central nervous system which causes the body’s immune system to attack myelin, a substance surrounding nerve fibres, causing confusion and delay in messages from the brain and spine.

MS can cause a variety of symptoms including loss of balance and mobility, extreme fatigue, depression and mood swings. There is currently no cure and few effective treatments, but with the right support and information people can continue their lives.

Now Sue, age 59 from Dunfermline, has been chosen as one of the faces to front the MS Society’s national campaign to raise awareness of the condition.

“The MS Society has provided me with so much hope and support over the years that I was only too happy to oblige. I’m representing the older members of society with the condition – and that’s fine by me!”

For the first two years of her diagnosis Sue’s MS symptoms were very aggressive. A year into her diagnosis she had to leave work, something she found terribly hard, and she was in and out of hospital around four times a year. In 2000 she lost the use of her legs and spent much time in rehabilitation learning firstly to stand and then to walk again.

“I felt frustrated that there seemed to be very little support available. If I couldn’t work I needed to do something to keep my brain active so I joined the MS Society and successfully helped campaign for access to disease modifying drugs. I signed up to the Society’s Research Network which has helped me a great deal in understanding the condition and has kept me busy over the years.”

Taking regular medication since 2000, Sue’s condition has stabilised and she has not been admitted to hospital for over eight years.

“I experience problems with mobility and use a wheelchair regularly, but I manage to walk some distances. My husband and I have moved to a bungalow now which helps a great deal. With his support and lots of good will, I can manage one way or another to achieve most of the things I want to do.”

“The biggest misconception I find in the MS community is that people think nothing is being done to help find a cure. Millions of pounds are being spent every year on MS research, and we are closer now to finding effective treatments than we’ve ever been before – something that will give many people hope."

but this is no easy ride....

It's MS Week - a chance for the MS Society to get loud about multiple sclerosis, raising awareness of it by reaching out to people who don't know much about it. I've got MS, and I've decided that every post this week is going to be dedicated to talking about this nasty little sod.

I had a stark reminder yesterday of how much my condition affects the people around me. In some ways, I'm the lucky one: I know exactly how I feel at any given time, and although I may not like it, and although I may be worried about what's going to happen in the future, happy or sad, I know how I am within myself. My friends and family do not have that luxury. They're concerned about me, of course, and they may be very well-informed about MS, but they simply cannot know how I am feeling. I was chatting away to my mum on the phone last night, and as well as hearing the happy news that my elder brother has found himself another job, my mum was naturally keen to know how I'd got on with the MS Nurse a week or so ago and at the Disease Modifying Drugs clinic the other day. I was merrily filling her in with the details of which drug I'd chosen, how I needed to go for a lumbar puncture and an evoked potentials test, and all that jazz, when my mum burst into tears and told me how sorry she was.

She's my mum, so it's only natural that she should be upset on my behalf, but I was still a tiny bit taken aback. For me this MS is what it is; I have it and there's not a damn thing that can be done about that now. For my mum though, even though she was a nurse and she's been married to a doctor for the best part of 40 years, so between them they probably know more than most about the condition, it must still feel a little like the world is falling around the head of one of her children, and she's upset on my behalf. It doesn't feel like that for me, but I have a very analytical and rational brain and an emotional response to something I can't do anything about seems to me like a waste of energy that could be better channeled into simply trying to get on with my life.

Although there seems to be some sort of a genetic component to it, MS is not a hereditary disease. Even if it was, it's still nobody's fault, and the last thing I'm going to be doing is running around pointing the finger of blame at my parents.

Which brings me to this evening's material from the MS Society. This one's a heartbreaker. Think that only adults get MS? Think again.



Stuart and Lucy's Story

With two cases of multiple sclerosis (MS) in the family, the Woods contacted the MS Society and said they wanted to help raise awareness of the condition.

Stuart Wood, age 40, was diagnosed with MS in 1996; his daughter Lucy, age 5, was diagnosed in August 2008.

The family are keen to show that MS can affect children as well as adults and have been chosen to take part in the MS Society’s latest advertising campaign to raise awareness of the condition. Here they share their story of living with MS.

Stuart was 27 and playing a game of competitive Sunday morning football when his team mates asked if he was drunk.

He’d been experiencing unusual symptoms – like pins and needles and a loss of sensation in parts of his body – but he chose to ignore them. When his vision in his left eye became blurred, and then went completely, he decided it was time to visit his doctors.

“I was put on a drip and my eyesight came back but a few months later my sight went in my other eye,” he explains. “I was slurring my words and things weren’t right but a diagnosis seemed to take what felt like forever.”

He started to investigate possible causes on the internet and so when doctors told him he had MS, he wasn’t too surprised. He explains: “When the doctors told me I had MS I was in pain with my symptoms and I immediately thought I’d spend the rest of my life in a wheelchair – but it hasn’t been like that and I’m glad.”

Stuart now wears a brace on his right foot and his right hand is constantly numb but he takes regular medication which helps. He works full time as an estate manager – a job that he really enjoys. He said: “People always ask me why I work full time but I couldn’t never just pack it in because I have MS – it would be like I was giving up. Quite a few people went for my job but I got it, I couldn’t believe it, it goes to show MS doesn’t stop you achieving what you want.”

Throughout Stuart’s condition he never thought that his symptoms would be replicated in his daughter. “When Lucy was diagnosed with MS I blamed myself and I still find it hard. I’m not an emotional person but I completely broke down when Sharon and I were told. It’s still hard to understand but we’re gradually learning to deal with it.”

Lucy was 3 when she started experiencing symptoms that would eventually lead to her diagnosis of MS. She developed conjunctivitis in her left eye and despite the drops was soon commenting that her vision was “all dark”.

The family visited the opticians who discovered swelling at the back of her eye. Doctors initially thought the cause was a tumour but referred Lucy for more tests which identified a possible diagnosis of ADEM – a neurological condition similar to MS but found more commonly in children.

Lucy reacted well to steroids, but over the next few months her health would fluctuate – from having no vision in her right eye to taking much longer than other children to recover from a water infection and finally collapsing at school with a suspected stroke.

Her mother Sharon explains, “It was a difficult time for us; like having a black cloud over our heads and trying to see our way in the dark – we just didn’t know what was going on and we just wanted Lucy to be ok.”

In August 2008, after several symptom-free months, Lucy collapsed on the kitchen floor at the family’s home after celebrating her 5th birthday. She was admitted to hospital and Sharon and Stuart began having thoughts that her symptoms could be related to MS. Tests identified lesions on her brain and doctors confirmed Sharon and Stuart’s suspicions.

“It was like being in a car crash,” explains Stuart. “It was just so difficult to hear. The only advantage was that we knew what MS was and what her symptoms might be. We could deal with the condition better than if we’d only just heard of it.”

Lucy’s condition now is fairly stable and her teachers report she’s doing well at school but struggles a little with fatigue and walking long distances.

The family remain positive about their futures and have found much support from the MS Society and other families in a similar situation. “Knowing Lucy has MS is never going to be easy but we’re slowly learning to accept it,” Sharon explains. “Stuart blamed himself at first, but we can’t look at the situation like that. We’ve received a lot of support from other families in our situation and that helps.”

ill communication....

It's MS Week from 27th April to 3rd May. It's an opportunity to try and raise awareness about a condition that affects some 85,000 people in this country, including me. As I said the other day, it's a condition that most people have heard of, but one that not many people know very much about, and a big objective for this week is to try and dispel some of the misconceptions that people have.

I've been in two minds about doing this, but I've decided that I'm going to dedicate the whole of this week to some of the material being produced for this campaign by the MS Society. If there's one thing I desperately want to avoid, it's to allow myself to become defined by my illness, and how can I seriously expect other people to see past it when I keep talking about it all the time myself? I've only been recently diagnosed with multiple sclerosis, but I've been suffering from the symptoms and going through the process of being diagnosed since August 2005. In that time, although I've tried not to go on about it too much here, it has been (all too literally) very much on my mind, albeit often in the form of background noise. It was an ever-present and most unwelcome undercurrent to every day. Since early-March this year, when my neurologist decided that I should be formally diagnosed with multiple sclerosis, things have picked up speed, and I've been attending clinics, meeting MS Nurses, booking myself in for a lumbar puncture and choosing which drug I'm going to be injecting myself with every week for the foreseeable future. I've chosen to be honest and open about all of that here, probably ensuring in the process that people increasingly see me, and perhaps I even see myself, as being more about the multiple sclerosis and less about the earworms and music and exercise and my brilliant career and all sorts of other random nonsense that are also part of my makeup and have been for a lot longer....

It's a tough one, and I was already beginning to wonder if perhaps I should write about the WTs less and other things more. But you know what? To hell with that. I'm going to continue to write about whatever takes my fancy, and right now (and without wanting to sound like I'm on X-Factor or something), I'm on this ridiculous journey and I'm going to write about that. In doing so, I find that it's helping me to work things out in my own head (oh, if only that were literally true....) and I hope it might also help some of you to become more aware of this horribly common neurological disorder and how it can affect people.

As the old adage goes, I might have MS, but MS doesn't have me. I'm not going to NOT write about it because I'm worried about what people might think of it and of me. Isn't that exactly the kind of thing that MS Week is trying to change? I think it is, and so over the next few days, I'm going to write about pretty much nothing else but MS, and to hell with what people think.

First up is a face familiar to many football fans: Danny Wallace:



Danny's Story

Danny was in his 20’s and at the top of his game playing professional football for Manchester United when he first starting experiencing symptoms that would eventually lead to a diagnosis of MS.

He was unable to bounce back from injury and was spending an increasing amount of time in the treatment rooms.

“At first I thought it was the usual injuries that all professional footballers got, but after a while things didn’t seem right,” he explains.

The turning point for Danny was in 1993 when he signed for Birmingham City. He began to feel pins and needles in his legs and feet and would feel incredibly tired after games. It was the smaller symptoms of the condition that had a major effect on his every day life.

“I would get frustrated that my feet were numb or I had pins and needles in my legs, I just wanted to play football. I couldn’t understand what the problem was.”

After deciding to retire from professional football in 1995, Danny went to speak to a financial advisor about his pension. He was sent for medical tests which diagnosed him with having multiple sclerosis - a condition of the central nervous system which causes the body’s immune system to attack myelin, a substance surrounding nerve fibres, causing confusion and delay in messages from the brain and spine.

MS can cause a variety of symptoms including loss of balance and mobility, extreme fatigue, depression and mood swings. There is currently no cure and few effective treatments, but with the right support and information people can continue their lives.

Now, almost 12 years since his diagnosis, Danny, age 45, has stepped forward to be one of the faces in the MS Society’s new campaign to raise awareness of the condition.

“Since being diagnosed I’ve spent much of my time raising money for others affected by MS and I was happy to take part in the campaign. It’s important to help others understand what the condition is,” he said.

“When I was first diagnosed I kept my condition quiet and only told close family and friends. I found it embarrassing and I couldn’t come to terms with it. Five years after my diagnosis I was able to come out and tell people.”

Unfortunately for Danny, his MS stopped his career as a professional footballer reaching its full potential.

“I would have definitely got more opportunities had I been fit while I was at Manchester United – I couldn’t play as many games as I wanted to and that had a negative affect on my career for sure.”

Now Danny is retired he helps raise money and awareness for MS, along with looking after the family home and his children. His symptoms include fatigue, pins and needles in his legs, problems with walking and regular back spasms, especially in the morning.

“I take regular medication, which helps, but walking is always a problem. I’ve even been out with friends in a social situation and people have presumed I was drunk. I might have had a few drinks but I certainly wasn’t drunk. It made me feel disappointed in people – that they could just presume that that’s the case, but I suppose they weren’t to know.”

---

Spread the word. More like this tomorrow.

you are young and life is long and there is time to kill today...

The NHS is an amazing institution. It's far from perfect, of course, but even as I sat waiting for my appointment some two-and-a-half hours past my allotted time at the MS clinic this morning, I couldn't help but marvel at the fact that I have access to some of this country's (and the world's) most eminent specialists in this field and I am going to be receiving some very expensive treatment, and no one is asking me to pay a penny. I've not once been asked to prove who I am, either, and have simply been confirming my name, address and date of birth before being ushered through. If I lived in the USA, the chances are that I would have the necessary medical insurance (after all, I have private cover here already), but I can't help but think of other people who might not be in such a fortunate position and who might thus be denied access to a treatment that, now I've been diagnosed, I can pretty much take for granted as my right.

As I waited to be seen, my attention was drawn from Richard Dawkins by a member of staff at the little coffee shop at the corner of the clinic. She was stood on a stool and was trying to insert a new pricelist into a frame. It clearly wouldn't fit, so after a few minutes of struggle, she went and found a pair of scissors and started trimming the price list until she got it to a point where she could squeeze it under the corners of the frame but would still have enough left to grip it in place. This took a good ten minutes. She then proceeded to try and put the plastic cover back in place. Clearly, this was the same size as the paper had been prior to its trimming, so it was no surprise (to me anyway) that it would not fit. The lady tried several different approaches: from the top; from the bottom; from either side; trying to creep it in by stealth. All her efforts failed. Finally, she resorted to brute force, trying to ram the thing under the edge of the frame and over the top of the new price list. No joy. A colleague came out from behind the counter to offer another pair of hands to the problem, but even then the simple fact of the matter was that the piece of plastic was not going to fit. No way.

At this point, a lady waiting in the clinic noticed that C and I were having quiet hysterics as we watched this uneven struggle.
"Are you watching that lady?" She gestured towards the coffee shop.
We nodded.
"Is it just me, or do the edges of those frames lift up?"
We nodded again and went back to watching the unfolding drama.

We all looked on as the two ladies in the coffee shop became increasingly frantic in their efforts to get the new price list up properly. After another five minutes, the other lady watching them stood up.
"I can't watch this any longer".
She walked over to the ladies at the coffee shop, and she showed the by now rather red-faced and flustered lady how the frame worked. She flipped open the four sides of the frame, inserted the price list and the plastic sheet and then flipped the edges back into place. Job done. The two ladies stared in amazement and wonder at this magic, and then thanked the lady for her help.

As the coffee shop closed for lunch (yes, I know), I couldn't help but reflect that if it took two members of staff about 30 minutes to carry out a ten second job, it was probably staff costs that had necessitated the price increases in the first place. That and being shut during peak hours, obviously. It was a nice thing that the helpful lady in the clinic did, and she might well be going to heaven, but as I picked up my book, I did think that she had certainly put a stop to our enjoyment.

Eventually I was ushered through from the waiting room, only to discover that I was being put into a second waiting room (with the nurse grumbling mildly that they always tell the consultants that they have booked too many people into a clinic, and that the consultants always, without fail, wonder why they're running so late every week). Some time after that, I was finally seen by the neurologist. We went through the usual set of mildly unsatisfactory tests: walking heel to toe across the room; touching the tip of my nose and then the tip of his finger a few times with each hand; shutting my eyes and telling him if the piece of metal he held on either cheek felt cold or hot.... that kind of thing. I then chose my drug of choice and was passed across to the (very nice) MS Nurse to do a bit of practicing with the syringe and the sniper's gunsight-like device that will shoot the 3-inch long needle into my thigh muscle. Now I have to wait for around 4-6 weeks for the drugs to arrive, and then we'll be on our way. Hurray.

I still haven't had a conclusive, black-and-white statement from the doctors that I have multiple sclerosis. It's a moot point, given that I've been de-facto diagnosed and I'm about to start injecting myself, but I want to be told once and for all, not least because I am obliged to declare this fact to people like the DVLA (so they can revoke my driving licence and issue me with a temporary one that will need regular review to see that I'm still physically capable of driving) and so that I can make a claim on my Life and Critical Illness insurance. I mentioned this, and the doctor is now sending me off for a lumbar puncture and an evoked potential test. This is not, he told me, because there is much doubt about my diagnosis, or even that these tests really prove anything much, but rather they will be done because my insurance company would be certain to want to know that they had been done. Brilliant. Still, needs must, and to be honest I'd quite like to know too.

Amusingly, when I got back to work, I had a meeting with some suppliers who commented how relaxed looking I was compared to the flustered and stressed looking technical architect who also attended the meeting. It must come to something when three hours in a Disease Modifying Drugs clinic at the local hospital is less stressful than a day in the office, but there you go.

Onwards and upwards, Rodney.

[no earworms today, I don't think.... back as usual next week. Any volunteers?]

these are the things I could do without....

It's 3 days to the start of MS week.



MS week is all about raising awareness of multiple sclerosis and hopefully reaching people who don't know very much about the condition. There's just been a survey that has highlighted some of the misconceptions that people have about multiple sclerosis.

"Almost half of those surveyed in the poll couldn’t guess how many people in the UK have the condition, and of those who did answer, 80 per cent underestimated the true figure. In fact, only six per cent were able correctly to identify that there are more than 85,000 people in the UK with MS, making it the most common, disabling neurological condition affecting young adults. Just under half of respondents to the survey couldn’t name a single symptom of MS, while only a quarter realised that it’s a disease that mostly affects people aged between 25 and 34, when a diagnosis is most likely to be made. Around 40 per cent (two in five) of respondents assumed a diagnosis of MS meant a lifetime in a wheelchair, whereas just 20 per cent of people with MS rely on one.

Alarmingly, six per cent of people attributed MS to ‘public health issues’ such as obesity, poor diet, smoking or germs. Some respondents even thought MS led to brittle bones, bad teeth, phlegm and loss of appetite."

Obviously this is something that's very close to my heart (well, I suppose it's rather closer to my brain, but you know what I mean....). Read that and it soon becomes pretty clear why we need to raise awareness of the condition, no?

Expect to see more of this kind of stuff on this here next week.

Meanwhile, I'm off to the disease modifying treatment clinic tomorrow to discuss with a consultant neurologist what I'm going to be injecting myself with for the foreseeable future.....

any minute all the pain will stop....

--
Shuffleathon 2008/9 Update

Holy cow, we're still doing this? Well, sit tight because we haven't got much further to go now. We're very much on the final stretch. No new reviews to report, but I we're inching our way towards the finishing line. I promise....

Right, so what about the final five then?

Mandy [work in progress]
Mike [work in progress]
Joe the Troll [work in progress]
asta [work in progress]
Paul W [has a bit of grace as his CD arrived pretty late]

Well, we're all grown-ups here, and if you're still waiting for your review -- and if it makes you feel any better, I'm still waiting for mine -- then all I can really say is that you should have every faith that it's on the way. It might still take a few weeks, but it will be worth the wait and then we'll get to the end of this damn thing....

As always, any updates on progress should be sent to the email address in my profile.

Shuffler	Posted out	Received?
1. Me	yes	review
2. Mandy	yes	yes
3. Charlie	yes	review
4. Planet Me	yes	review
5. Ian	yes	review
6. Mike	yes	yes
7. Jerry	yes	review
8. monogodo	yes	review
9. Erika	yes	review
10. Michael	yes	review
11. Lisa	yes	review
12. Cody Bones	yes	review
13. Del	yes	review
14. RussL	yes	review
15. Tina	yes	review
16. Wombat	yes	review
17. Joe the Troll	yes	yes
18. JamieS	yes	review
19. Cat	yes	review
20. Rol	yes	review
21. Beth	yes	review
22. asta	yes	yes
23. bedshaped	yes	review
24. Paul	yes	review
25. Alan	yes	review
26. Astronaut	yes	review
27. Threelight	yes	review
28. The Great Grape Ape	yes	review
29. Paul W	yes	yes
30. Ben	yes	review

Shuffleathon is based upon an original concept by the delightful YokoSpungeon.... thanks Yoko.

Nearly there now.

**sigh**

As someone wise once said, just have a little patience, yeah?

(oh shit. earworm alert. cos IIIIIIIIIIIIIIIIII need tiiiiiiiiiiiiiiiiiiiiiiiiiiime......"

...but I get up again

It's been a mixed day so far. It didn't get off to the best of starts when I got out of bed to answer the door at about 7am and promptly fell straight over. I managed to get myself up and to the door, but I have now got an enormous bruise on my backside and was a bit shaken up. This isn't funny any more.

Things quickly looked up, as they often do on a Wednesday morning, when I went to the Primary school to do my usual reading hour with the pupils there. I haven't been for a month or so, thanks to our trip to Canada and then the Easter holidays, but the Summer term started on Monday and I was looking forward to getting back into the swing of things. I think the oldest of the class has just turned seven, so they're at a good age where their reading is coming along nicely and where they are still generally pretty happy and enthusiastic about being in school. I spent my usual happy hour listening to three of them as they read me stories about Floppy, Biff, Chip and the rest of the gang. It's another beautiful sunny day in Nottingham, and my reading with Lauren was interrupted when the teacher took us all out to the courtyard in the middle of the school to have a look at the ducklings that have just hatched out next to the little pond they have there. Because we were walking at the back of the line, and because she was worried about stepping on a duckling, Lauren insisted on holding my hand all the way to the courtyard. I felt a touch awkward of course, and not entirely sure if this was 'allowed', but to Lauren it was the most natural thing in the world, so I was happy just to go with the flow. We then spent a happy ten minutes or so admiring the eleven fluffy ducklings as they podded around under the watchful eye of their parents, and then we wandered back to the classroom, again holding hands all the way back, and we finished off our book about the clever chick who outsmarts a fox. When I left the school, I was feeling a whole lot better.

Work is always a bit of a comedown from that, but that hour is usually enough to make me feel like I achieve something worthwhile on a Wednesday.

if we worked hard, if we behaved....

When I talk about my job here, it's usually to have a moan. Given that I've just filled out a snapshot 'climate' survey to say that I think that things are generally rubbish and that I've never had so much work with so little support, you could be forgiven for thinking that this situation isn't about to change any time soon and that another moan is imminent. Well, I'm not going to rule that out, but fair's fair, and I've actually got a couple of positive things to say about my job. For once.

I attended one of those team away day things at a local conference centre today. I won't say that I was especially looking forward to it, and my enthusiasm levels only dropped further when I found out tonight that there was going to be some karaoke and there might be some form of dancing involved. I don't mind talking about the company strategy, and at a pinch, I'm even prepared to listen to those talks we sometimes get from HR about how well-thought through their succession planning is and how we really should take our performance and development plans more seriously. Karaoke and dancing? What's that got to do with anything? How will making us feel awkward and embarrassed enhance our performance as a business?

As it turns out, I needn't have worried. There was a rendition of "Islands in the Stream" by one person who seemed to be enjoying themselves just a little too much, but no one else had to do anything, and there was no dancing. At all. What we did get were a number of sessions about different parts of the business and how it all links together in one seamless and well-thought through strategy. And you know what? It was pretty good. Even the session from HR. Credit where it's due, I guess.... and it finished early enough for me to enjoy a run alongside the river in the glorious evening sunshine, so it it's all good.

There's another positive thing I've got to say about work too: I've got a new (interim) boss. He's completely new to the company and I've only had two or three meetings with him as we work on my *sigh* performance and development plan, but in that time he's already managed to breathe a bit of optimism and enthusiasm into me. I know.... he must be good, right? I don't know what he's been told about me, and I haven't decided if he's a really excellent judge of character or simply a skilled people-manager, but he's actually managing to make the whole process of making me map out my targets for the next year - usually incredibly painful - seem like it might actually be something worth shooting for. In the final analysis, I don't think it matters, actually, and I've found myself opening up to him and actually thinking hard about what I want to do. It's early days yet, but that's a good start. He's even got me thinking and talking about things like "behavioural comfort zones". Sounds suspiciously like bullshit to me, but I haven't dismissed it yet.....

I might still have a shit day tomorrow and be back to moaning, but let the record show that I've detected the tiniest spark of optimism within myself. Heaven help us all.

I think I heard a shot....

I had a terrible night's sleep last night. Normally I'm one of the lucky ones, and sleep is not usually something that I have any trouble with at all. I'm a night owl but I have to get up in the morning to get to work, so I very rarely get enough sleep, and certainly not as much as I'd like - the fabled eight hours is something that only ever happens to me at weekends - but pretty much from the moment I put my head on the pillow, I'm out for the count until my radio alarm reluctantly drags me back to consciousness at around seven.

I'd had a couple of glasses of wine with my dinner, read a few pages of my book, and when I turned the light off, I was fully expecting not to wake up again -- barring the odd trip trip to the bathroom -- until C. got up to catch an early flight to Moscow in the morning. No such luck. I got a little over an hour's sleep before waking up at around 2am, and from then on in, I just seemed to be completely unable to settle down.

My left arm was aching, my feet were numb and my thighs were throbbing. I felt a little as though I had insects crawling under my skin looking for a way out. Not a comfortable feeling, sure, but not something that I haven't had to become accustomed to over the last few months. That in itself did not explain why I was tossing and turning. It's possible I was worrying about work, although unlikely; more likely was the possibility that my appointment on Friday at the disease modifying clinic, when I'm going to choose the treatment I want for my MS, was playing on my mind. The cat, contrary creature that she is, decided that tonight would be a good night to sit curled up against my legs. She usually sleeps at the top of the stairs, where she can keep an eye both on us and on her cat-flap, only very occasionally gracing us with her presence on the bed. Even when she does hop on, she is a dab hand at stomping off in a huff as soon as there is a stir of movement from under the duvet. Yesterday though, there was no shifting her: every twist and turn I made in the bed, the cat just adjusted herself so that she was leaning up against my legs again. I was pleased and slightly honoured that she was there, but as I thrashed around, I couldn't help but think I might be more comfortable if she moved. I could have kicked her off, of course. Of course, I did no such thing.

I watched as the sky grew lighter; I picked up my phone and checked Twitter , sent a tweet and then looked at my email. I considered turning the light on and reading my book for a bit, but decided to content myself with a toilet trip and another serious attempt at sleep. On my way back, just as I was pivoting on the floorboards to face the bed, the fleshy part of my big toe caught on a raised nail and the skin punctured. As if I wasn't awake enough already, now my foot was throbbing into the bargain. The cat blinked at me sleepily as I tried to assess whether or not I was likely to bleed all over the sheets. She didn't move when I climbed back into bed, although C. stirred and wondered what all the noise and movement was about.

I dropped off eventually, but before long (and certainly before my alarm went off), C. was up and about and getting ready to be picked up and taken down to Heathrow for her flight. She brought me a cup of tea and left me to get up and do my strengthening exercises before showering and getting ready for a day I felt even less prepared to face than normal.

I know that I'm lucky not to normally have problems with my sleep. One restless night does not an insomniac make, and I'm fairly sure that a real insomniac would laugh in the face of my probably-not-actually-disturbed-all-that-much sleep. But still, it was a rubbish night's sleep and I don't care to see it repeated tonight. If I'm this het up after one night like this, then I don't know how people cope with real insomnia. I'm not sure how much loss of sleep I could take. One crappy night and already I am Jack's cold sweat; I am Jack's raging bile duct; I am Jack's colon; I am Jack's complete lack of surprise; I am Jack's wasted life; I am Jack's inflamed sense of rejection.....

No sign of Tyler Durden yet, but I wonder how far away he is.

"I see all this potential, and I see squandering. God damn it, an entire generation pumping gas, waiting tables; slaves with white collars. Advertising has us chasing cars and clothes, working jobs we hate so we can buy shit we don't need. We're the middle children of history, man. No purpose or place. We have no Great War. No Great Depression. Our Great War's a spiritual war... our Great Depression is our lives. We've all been raised on television to believe that one day we'd all be millionaires, and movie gods, and rock stars. But we won't. And we're slowly learning that fact. And we're very, very pissed off."

Then again, perhaps I'll sleep like a baby tonight and we can forget we ever had this little conversation?

keep keep on running....

--
Earworms of the Week

> "Killing in the Name" - Rage Against the Machine

For some reason, this has kept popping up this week, and I'm almost almost always delighted to hear it. It's a particularly good track to hear when swimming, actually. It's certainly more likely to get me moving a little faster than all the Radiohead that keeps popping up, anyway. What a brilliant band RATM were. Sure, they're not terribly subtle about their political statements (although those orange boilersuits were great), but you surely have to admire their passion. And the sixteen times that Zack de la Rocha tells us, with varying degrees of intensity, that "fuck you I won't do what you tell me". There's one hell of a "motherfucker" at the end there too. Huh. Come on. Great record.

> "People Help the People" - Cherry Ghost

"Thirst for Romance" was one of my favourite albums of 2007, but I have to say that I haven't listened to it an enormous amount over the last few months. This was the song that first caught my attention, and when this popped up on my iPod when I was out running the other day, it's such a great song that it prompted me to dig out the album again. Still sounds pretty good to me.

> "Holiday" - Madonna

Not a record that I would say I am especially fond of (to put it mildly), but they keep playing at the gym, so what can I do? To be honest, I'm mainly thankful that this is the one that stuck and not the other song that they keep playing.... Club Tropicana.

> "The Needle and the Damage Done" - Neil Young
> "Heroin" - Velvet Underground

Well, there's no prizes for guessing where these two came from. To be fair, if you have to be thinking about songs related to injecting yourself, you could do an awful lot worse than these two. Very different songs, for sure, but both are outstanding.... I saw the Velvet Underground perform this song at Glastonbury in 1993 (just about, as I walked back to my tent having seen Suede).... perhaps I'll be lucky enough to see Neil Young playing perform this at Glastonbury this year. I'm not holding my breath though, cantankerous old sod.

> "Hero" - Enrique Iglesias

This is just bloody wrong. I've no idea where it came from, and I simply wish that it would go away. Soon.

> "No You Girls" - Franz Ferdinand

"Ulysses" did absolutely nothing for me, so I wasn't really holding out much hope for the album. The first couple of plays seemed to confirm my opinion that they'd stuffed up, but... you know what? It's really grown on me, and I think one of the keys has been this song. I'm not saying it's genius or anything, or even that it's anywhere near as good as some of their other stuff, but I like it.

> "All Nightmare Long" - Metallica

"Death Magnetic" just keeps getting better and better the more I listen to it. It's a real struggle when I go out running not to just default to this album now, because I know that I run like the hounds of hell when I'm listening to this. It's an absolutely massive album. I love "That Was Just Your Life", "Cyanide", and "Broken, Beat and Scarred", but this is my current favourite. Nobody growls like James Hetfield.

> "Make Your Own Kind of Music" - Mama Cass

Memorably used in an early series of "Lost", a programme that I gave up on a couple of years ago. C., however, still watches it religiously. Judging from an episode that I sat and watched earlier this week, I can't say that I'm especially sorry to have given up on it. Time travel? Eh? Life's too short. And don't get me started on "Heroes", either. This remains a great song, however.

> "Touch Too Much" - AC/DC

You have to love AC/DC. They're not the cleverest band in the world - not by a long shot. Their songs essentially tell stories of sexually voracious women, heavy drinking and a lot of shagging. They have one amazing riff, which they stole from the blues.... but what a brilliant band they are. This song is from "Highway to Hell", and it basically conforms to type: it's about a woman who likes to shag and it has a chorus that other bands would die for. And the lyrics? Ah, the lyrics:

"She had the face of an angel
Smiling with sin
The body of Venus with arms"

The body of Venus with arms? That's brilliant!

Judging by the setlist tweeted by @mrmarkreed, it sounds like their current live show is worth seeing too.

> "Farewell to the Fairground" - White Lies

I wasn't sure about this lot initially, but almost in spite of myself, I've found that I really like the album. This song (which I think is their current single) has lodged itself into my head simply because of the choppy guitar riffs. When it pops up on my iPod when I'm running, I simply cannot resist doing a bit of air guitar. I look a twat when I'm out in my lyrca at the best of times, but sweaty, wearing lycra and playing air guitar? Yes, quite.

Right. Enough.

Have a good weekend y'all, and stay classy.

he always took the time to speak to me, I liked him for that...

I received an email a little while ago from someone I went to school with. As regular readers will know, I don't really look back on my time at that school with any great fondness. It was a hugely formative period of my life - far more so than my time at university - and it had a crucial role in the shaping of my personality; it was here too that I made some of the most lasting friendships of my life. It was also a time of my life that I was delighted to put behind me, and since I left, I have actively avoided cultivating any ties with my old school, in spite of the plethora of reunions and dinners that they keep inviting me to. My friends aside, the thought of staying in touch with the vast majority of the people I met there fills me with horror. I know full well that not everybody fulfills the stereotype of the arrogant, floppy-haired public schoolboy, but a good many of them do. I've spent far too long running away from that stereotype and from people's preconceptions of public schoolboys to want to spend any time with living, breathing examples filled with some sepia-tinted nostalgic view of the time they spent at their alma mater. If the time I spent at that school turns out to be the best years of my life, then I want a refund.

So, I think it's fair to say that the email was not entirely welcome. Less welcome still was the dawning realisation, as I read, that my email address had been harvested from this blog. Emails sent from Friends Reunited are one thing and are easily ignored, but this one was different and altogether more unsettling. I don't blog under my real name for the very simple reason that I don't really want all of this to come up when I'm googled. I'm fully aware that it's only a figleaf of anonymity and that anyone who reads this who really wants to find out who I am can do so easily. Hell, if you ask me, I'll probably tell you. My name is not a secret, and I don't really write about anything controversial, but I don't really like the idea of people idly searching for me by name to land here.

To be fair, the guy who sent this email was very much not a typical public schoolboy - quite the opposite, in fact. I wouldn't say that we were especially close at school, and obviously we haven't kept in touch, but he was in a lot of the same classes as me, we ate and slept in the same House for five years, and he was basically okay. I don't know if he had stumbled across this blog accidentally or if he had been pointed in this direction, but he was planning his honeymoon and wanted to know about our trip to Ecuador in 2007. Did we learn any Spanish? Did we take much cash with us? That kind of thing. Harmless stuff really, but although I received the email several weeks ago, I haven't yet answered. Initially, I had no intention of answering at all: I was mildly alarmed to be contacted in this way via my blog and to have someone I knew from school rummaging around through my archives.... although, to be honest, given that most of my friends, several colleagues and now some members of my family read this already, I'm not sure why I would be too worried about that. I think what really pissed me off was that the email, although politely written, made reference to nothing except my trip to Ecuador and any advice and tips I might be able to pass on. Fair enough, I suppose. That's both a reasonable thing to ask and something that I would be more than happy to share with any passing stranger who emailed me to ask having read my blog entries on the subject. So why did I not reply to this? I think what irritated me was that many of the most recent posts I had written when he sent the mail were about my health, and yet this guy had just dived straight into asking me about Ecuador. Was he really interested in getting back in touch with me, or just interested in what I could tell him to help him plan his trip? I'm sure Ecuador was very much on his mind, and he may well have just landed here via a Google search and recognised me via a photo, but if you accidentally stumbled on five years worth of material written by someone that you used to know reasonably well, wouldn't you read around a bit? I'm pretty sure that I'd read the most recent posts, anyway.

So I didn't reply.

On reflection though, I think I'm being rude. He was always a decent enough guy and I don't really mind him reading this blog (although it's not as though I could stop him, is it?). Perhaps I'm overreacting. After all, is his directness not a good thing? He hardly comes across as disinterested in his email, and he seems friendly and polite, but would it somehow be better if he pretended to be more interested in MEMEME? What exactly would I expect him to say about the fact that an old acquaintance he hadn't spoken to in more than a decade has just been diagnosed with MS? He'd hardly be the first person who didn't really know what to say to me about that. What could he say?

Hmm.

What do you think?

Yeah, you're right. I should reply.

(and if, by any chance, he happens to be reading this.... well, that's one of the perils of rekindling an acquaintance with a blogger, innit. If it's not too late, I'll be more than happy to share my experiences of what is a beautiful, interesting country filled with lovely people. You'll have a great time.)

when I'm rushing on my run....

Since that lovely morning in the summer of 2005, when I first woke up with pins and needles in my right hand and wondered if I'd slept on it funny or something, I've been desperately frustrated that there seemed to be nothing that medical science could do for me but wait and watch and see what happened. Well, to be strictly accurate, it wasn't that they couldn't do anything for me, it was more that they had drawn some arbitrary looking diagnostic lines in the sand, and until I crossed one of those arbitrary lines, they weren't going to do anything for me. Not that medical science has a whole lot to offer in this area, but what they did have, they weren't sharing with me. They were most definitely bogarting the joint.

Now, of course, things are different. I've crossed those imaginary diagnostic lines and suddenly my world has changed. I've been diagnosed with a currently incurable neurological condition: this is not a good thing, but it does mean that the medicine box has been opened and my neurologist has suggested that I should attend a disease modifying clinic with a view to starting treatment.

This sounds like it ought to be a no-brainer: drugs are being offered, so why wouldn't I take them? They're really, really expensive drugs too, with a year's course coming in at something approaching £10,000 (thank you NHS!)...... And yet I've found that the decision to take disease modifying drugs is not something that can be taken lightly.

No treatment is still a viable option. There is no cure for multiple sclerosis, and the treatments on offer are thought to -- maybe -- slow down the progression of the disease by reducing the number of relapses and also by -- possibly -- reducing the progression of disability. Although there is some decent clinical evidence to suggest that these drugs will slow down the march of MS by some 30-50%, there is pretty much no way of proving that they're working.

And they all have side effects.

All of the four treatments on the table are (self-)administered by injection. One is a weekly injection into the thigh, and the other three are either daily or alternate day subcutaneous injections. Some require refrigeration, others do not. Three of the drugs are variants of a chemical called Beta Interferon, and the other is something called Glatiramer Acetate. One of the side-effects of Beta Interferon is that it causes flu-like symptoms like headaches, muscle-ache, fever and chills. One of the side-effects of the Glatiramer Acetate is that it can cause chest pain, palpitations, flushes, anxiety.... lovely. The weekly injection has the obvious disadvantage of a much bigger needle, but the more frequent injections (with smaller needles) can often cause injection site issues like swelling, redness, skin hardening and something alarming sounding called liponecrosis.

Sound great, right? It goes without saying that starting on a treatment like this is bound to have a huge impact on my lifestyle. As well as the injections themselves, I'm going to have to contend with taking the whole kit and caboodle pretty much everywhere I go, including though airport security (where, not surprisingly, they view 3-inch needles with a degree of suspicion....)

For all of that, though, I can't quite bring myself to see no treatment as an option. I could baulk at all those side-effects and decide to wait and see, but what am I supposed to think when the first big relapse comes along? Will I be wondering if it would have happened if I had been injecting myself? Perhaps it would have done, but would the impact be as severe? Maybe, but I don't think I want to roll the dice and take that chance.

But what to take? I had my first appointment with an MS Nurse yesterday. Now that I've been diagnosed, she's going to be the centre of my treatment hub, and yesterday she showed me all of the drugs and how they're taken, but the decision very much lies with me. I've been given a whole lot of supporting information, not least this fantastic website, but it's very clear that I'm the only person who can decide what to do.

I've got until next Friday, when I attend the clinic, to make up my mind.... and I really haven't got a clue. I can't really tell the difference between the drugs on clinical grounds (and the results of the trials are much of a muchness), so the only thing I can really do is to try to work out which one would suit my lifestyle the best (by affecting it the least). The intra-muscular injection might require a longer needle, but I'm not really squeamish about that, and to my mind there are huge advantages to only having to inject once per week, and to having a product that does not need to be kept in the fridge. That's my favourite at the moment, but it's not really much of a choice, is it? Still, if there's one thing I have decided, it's that doing something about this is a whole lot better than doing nothing.

Bring it on!

*sigh*

April come she will.....

When we were in Ecuador in the spring of 2007, our guide had a wise saying: "not for free is the rainforest". He would say this, with a phlegmatic shrug of his shoulders, whenever anyone looked anxiously at the sky. He had a point. Why worry about whether it's going to rain or not? After all, it was the rain that made the beautiful landscape of this stunning country possible.

The phrase sprang unexpectedly to mind as I was stood over a barbecue in the rain on Sunday. Instead of spending the day arguing with my dad over the existence or otherwise of the historical figure of Jesus Christ, I had elected to spend the weekend with my friends in Oxford watching the final two rounds of the US Masters golf at Augusta. I'm sure I've spent Easter away from my parents before, but there was something wonderfully liberating this year about electing to spend the time with friends instead of family. We drank beer, we drank wine, we shot the breeze about the golf, fell asleep in front of old re-runs of Red Dwarf and we generally relaxed in the company of people we've actively chosen to spend our time with over the course of the last 25 years. Are friends the new family? Is black the new black? I can never keep up with these things.

Given that it was April and we're in England, perhaps it was a little ambitious to plan to have a a barbecue on Sunday... and sure enough, no sooner had we put all of the bits and bobs out on the garden table and fired up the charcoal, than it started to rain.

I didn't mind it though. Ten days in Canada, beautiful country though it is, has given me a new appreciation of the English spring. The Rockies are stunning, no question, but where the winter snow is starting to melt, the grass underneath is like dirty brown straw. It's not surprising, really, given that it's been under a coat of snow for several months and hasn't seen a jot of sunlight in all that time, but it's still not very attractive. England at this time of year, on the other hand, is absolutely bursting with promise. Compared to Canada, of course, the temperature is extremely mild, but how pleasing is it to see the trees blossoming, the daffodils blooming, to smell the first grass cuttings of the season and to smell the changing season in the air? Of course, as Ivan from Ecuador would point out, this stuff doesn't come for free..... but if the price we have to pay for the English spring is a little rain, then I say bring it on.*

I've had a lot on my mind recently, but it was a great weekend.

---

* if it's still raining in May, however, with no sign of abatement and Glastonbury beginning to figure in my thoughts, then I reserve the right to change my mind.

two hours of pushin' broom....

--
Earworms of the Week

I think it's only fitting that the final words on our wonderful holiday in Canada are set aside for the music. Canada is many things, but based upon what we heard when we were over there, it is not the best place in the world to hear cutting edge tunes. You know the old joke about New Zealand? That if you climb to the very top of Mount Cook, their tallest mountain, and look out, on a really clear day you can see as far as the 1950s? Well, Canada is sort of the same with music. It was everywhere: in the shops, in the restaurants.... even out on the piste and on ski lifts, but up to date, it was not. Do you know what though? I even love them for that. Here are some of the tunes that I heard when I was out there last week that I haven't really been able to shift since.

Check it out.

> "Photograph" - Def Leppard

How often do you get to hear really old school, pre-Hysteria, Def Leppard? Not as often as you should, I say. I was reminded of the mock-German beginning to "Rock of Ages" when I heard "Pretty Fly (for a White Guy)" the other day, and then there I was, minding my own business in a ski lodge somewhere in Canada, and they started to play this early-80s classic. Rock on. Great steak, great skiing, beautiful scenery.... and a taste for probably-best-forgotten 80s metal. What's not to like?

> "The Sign" - Ace of Base

OK, so it's not all rock. Whilst Ian and Keith were off having some lessons, I spent three days in the company of the three girls. Just as the four of us were getting onto a chair lift at Norquay, we heard the very beginning segment of a song before we were swept uphill. Lisa sat there for a couple of minutes, and then chirped up that she'd finally remembered what the song was.... and it was Ace of Base. On the one hand, I was quite impressed that she'd managed to dredge it up from somewhere deep in her memory on the basis of a ten second snippet. On the other hand, it's Ace of Base. It's not even "All She Wants" either. Not an earworm you'd volunteer to be lumbered with for several hours on the side of a mountain, but there you go.

> "I'll Be There for You" - Bon Jovi

Ah, back to the safer territory of 80s hair metal. As you'd expect, I heard a few Jovi songs whilst over in Canada, although interestingly they only seem to have got as far as the "New Jersey" album, so presumably they all stopped listening when JBJ got his hair cut. I recognised this ridiculous power ballad disturbingly early in the introduction too. The shame.

> "Fernando" - Abba

I hate Abba, as you know, so imagine my horror when I was busted singing this as we ascended the Larch quad at Lake Louise.

> "When You're Gone" - Bryan Adams feat. Mel C.

Adams is pretty high up on the list of famous Canadians, so it probably wasn't all that surprising that we heard quite a lot of his music whilst in Canada, with this duet with Melanie Chisholm proving especially popular. I quite like this song, actually. She always was my favourite of the Spice Girls, you know.

> "Jessica" - Allman Brothers

The Top Gear theme, no less, and a song that fans of Guitar Hero II will be able to tell you contains a surprisingly long and complicated guitar solo. This came on when we were having our lunch at the Temple Lodge in Lake Louise. I had a big hot chocolate and a bowl of chili, and I think this song lasted for the entire duration of the pit stop. Well, you can't beat a good red-neck guitar instrumental, can you?

> "Man! I Feel Like a Woman" - Shania Twain

A chance hearing of this out on the mountainside prompted an immediate debate about whether or not Shania Twain could join "those two blokes who invented Trivial Pursuit" on our list of famous Canadians. In the end, although our gut instinct told us she was, we couldn't be sure enough to add her on. We should have known better - she was, of course, born in Windsor, Ontario and is thus a card carrying Canuck and the second best selling Canadian artist of all time, behind Sealion. Dreadful song, mind.

> "Constant Craving" - kd lang

Definitely Canadian, and definitely a much better song than the above.

> "Ironic" - Alanis Morissette

Another Canuck, and another artist who we heard quite a lot of whilst out on the slopes. "You Oughta Know" was popular, and was always played in its full sweary glory, but this one was everywhere. As always, it prompted the not-very-insightful debate into how little Alanis seems to actually understand what the word means. Or was she being ironic?

> "The Spirit of Radio" - Rush

The widdly guitar opening to this song greeted us as we stepped off the bus at Lake Louise for the first time, although it was apparently wasted on everyone except Keith and me, who both recognised it instantly for what it was, in all its double-headed guitar genius. What I did not know, however, was that Rush are a Canadian band.... presumably they are as hallowed in their homeland as Neil Young and Joni Mitchell. If not, then why not? They must be more revered than Nickelback though, right?

> "More than a Feeling" - Boston

I heard this playing not once, but twice when I was out on the mountain one day. And each time I did, it managed to put a massive smile on my face underneath my face mask. This is one of the best songs ever recorded. Full stop. It features one of the best guitar solos ever too. Any country that loves this song is okay by me.

> "Everything in its Right Place" - Radiohead

It took me a while to pick it out, but amidst this carnival of 70s and 80s rock, I was actually astonished to hear a bit of Radiohead from their difficult period (which is, of course, ongoing). We were in a lovely restaurant in Banff called the Bison, and when I worked out what I was listening to, I nearly fell off my chair, such was my surprise at hearing a song that was so good, so cool and so up-to-date (well, it was recorded in 2000, but by the standards of everything else we'd heard, that was pretty much contemporary). Great record. To be fair it stands out a mile in almost any company, never mind amidst a pile of Shania Twain and Barenaked Ladies records.

> "King of the Road" - Roger Miller

I didn't actually hear this in Canada, but it became embedded in my head in the car journey down to Heathrow and I was totally and utterly unable to shake it, in spite of a collective failure of the whole party to remember most of the words. Terrible record, right? Wrong. It's a work of brilliance, and was somehow an entirely fitting soundtrack to the whole ten days we were there.

---

So there you go, more reasons to love Canada. I didn't hear any Leona Lewis or any Tinchy Stryder or any Akon or anything when I was over there, and that in itself was utterly blissful. Getting to listen to a bit of Leppard, Rush, Jovi, Boston and the Allman Brothers was just the icing on the cake. I even heard Nik Kershaw's "The Riddle" when I was having my breakfast one morning, and what's not to love about that? I might take an iPod full of kicking hits from the 80s and 90s and set myself up as a bleeding edge DJ on Canadian radio. I could be their John Peel......

he's already in me....

--
Shuffleathon 2008/9 Update

Isn't it about time we caught up with the longest running serial in the world after Coronation Street? Why the hell not?

OK, so I set a nominal deadline of the end of March for the final eight to get their reviews in. I wasn't really expecting anyone to pay me any mind, but whilst I was away, no fewer than three people felt moved to pull their fingers out and get their reviews in..... yay!

First up is the review in from Monogodo of the CD he received from Joe the Troll (a partial hit, I reckon... and, by the looks of it, a really well put together CD). Next is Wombat's review of the CD she received from Ian (you only know one -- maybe two -- Stone Roses song? Man, there's one album I know to - belatedly - get you for your birthday....and "Yes" by McAlmont & Butler is a superb choice by Ian - an excellent song. Ian might have deleted his internet presence, but that looks like a decent CD to me.) Finally we have Charlie's review of Tina's CD - another hit. Apart from not quite being able to believe that Charlie's been hanging around here for all this time and hasn't really heard any Elbow before now, that looks like another well-thought through CD by Tina with some really outstanding choices on there.

Well, well. This is more progress than we've had in weeeeeeeeks. Well done guys, and thanks for playing. At this rate, I might even consider doing another one.

More of the same please, and we might just get this finished before the next one (if there is one) starts.....

---

So, Battlestar Galactica is over, but in our own little way, we've uncovered the Final Five:- 5 reviews still to go (although Joe tells me that his is underway....):

Mandy
Mike
Joe the Troll
asta
Paul W

Come on people, together we can finish this thing!

As always, any updates on progress (assuming there are any) should be sent to the email address in my profile.

Shuffler	Posted out	Received?
1. Me	yes	review
2. Mandy	yes	yes
3. Charlie	yes	review
4. Planet Me	yes	review
5. Ian	yes	review
6. Mike	yes	yes
7. Jerry	yes	review
8. monogodo	yes	review
9. Erika	yes	review
10. Michael	yes	review
11. Lisa	yes	review
12. Cody Bones	yes	review
13. Del	yes	review
14. RussL	yes	review
15. Tina	yes	review
16. Wombat	yes	review
17. Joe the Troll	yes	yes
18. JamieS	yes	review
19. Cat	yes	review
20. Rol	yes	review
21. Beth	yes	review
22. asta	yes	yes
23. bedshaped	yes	review
24. Paul	yes	review
25. Alan	yes	review
26. Astronaut	yes	review
27. Threelight	yes	review
28. The Great Grape Ape	yes	review
29. Paul W	yes	yes
30. Ben	yes	review

Shuffleathon is based upon an original concept by yummy-mummy nonpareil YokoSpungeon.... thanks Yoko.