I could sleep for a thousand years...

Coming as they do immediately after the night of my weekly injection, I always seem to find Wednesday mornings difficult. My routine on a Tuesday is almost entirely built around my injection: I drink as much water as I can during the day; I avoid alcohol; I take a couple of paracetamol and a couple of ibuprofen and then I go for a run. All of these things - bar the run - are designed to try and minimise the side-effects of the Avonex that I inject into one of my thighs after my shower but before my dinner. The injection itself is usually pretty quick and painless, but the thought of it looms large throughout the whole day.

The purpose of this drug is to try and prevent my immune system from causing any more damage to my nervous system, thus slowing down the onset of disability as my multiple sclerosis advances. The evidence that it works isn't exactly overwhelming, but I'm of the opinion that it's better to try something that might work than to do nothing at all. Not everyone with MS agrees, and lots of people find that they would rather take the chance of the increased relapses by doing nothing than of continuing to live with the side-effects of the drug.

The side-effects vary from person to person, but include things like pounding headaches, shivering, a raised temperature, sweats and other flu-like symptoms. The long-term use of the drug can also damage liver function and cause other blood abnormalities, as well as the more immediate problem of injection site issues where you stick the bloody great needle into your leg. Yeah, it's easy to see why some people decide that it's not worth it... but luckily for me, I seem to be relatively unaffected: my red blood count has been dropping and I'm now slightly anaemic, but my liver seems to be okay, and as long as I remember to take the ibuprofen and paracetamol before I inject, I'm not really bothered by headaches or anything like that (although the one time I did forget, I woke up in the middle of the night with the most incredible pounding in my head, so I'm certainly not in a hurry to forget again).

One side-effect I do experience is that I usually wake up on a Wednesday morning completely devoid of energy. I wake up most days now with very little feeling in the soles of my feet, and have to get out of bed very carefully, but on a Wednesday I struggle to get out of bed at all: I feel as though all of the strength has been sapped from my muscles and I'm weary down to my bones. The main reason I go for a run on a Tuesday night is that I know there's a good chance I won't want to do anything of the sort on a Wednesday. Too much like hard work. Wednesday has become my default (and reluctant) rest day.

This morning I dragged myself out of bed, forced myself to do the strengthening exercises -- that I do every Monday, Wednesday and Friday -- that are helping to stop muscle wastage across my arms and shoulders and got ready for another depressing day at work. The weather was pretty grim, so I think it's fair to say that I didn't exactly have a spring in my step as I left the house.

My energy levels - both physical and mental - are definitely at their lowest on a Wednesday morning. If there is a time of the week when I need a lift, then Wednesday morning is definitely that time. Luckily for me though, that is exactly the time of the week - in term time at least - when I usually receive exactly the boost required: I don't go directly to work on a Wednesday morning, I stop instead at a local primary school to help out with their reading. I often say that it's probably the most valuable hour of my working week, thinking of the kids, but I'm beginning to realise how much of a difference that hour makes to me too.

This morning, I walked into an almost empty classroom to be greeted by the warmest of smiles and a cheery "Good morning Tim!" from a charming seven year-old called Chloe.

It is, I reckon, impossible to feel too sorry for yourself after that.

I want to live and I want to love....

So, that's decided then.

From the end of January through to sometime in September 2010, we are going to be stepping off the merry-go-round and will be taking some time off from work. Aside from an already booked ski trip in January, we've got nothing concrete planned yet, although we're hoping to get down to New Zealand and Australia for a couple of months from February. Other ideas include things like learning how to dive, going on a safari, visiting Petra in Jordan and the Valley of the Kings in Eygpt and I'd also very much like to spend some time in the Canadian Rockies outside of winter. There's literally a whole world of possibilities in front of us.

Why now? Well, since my diagnosis with MS earlier this year, I suppose it's tempting to say that I want to go and do these things whilst I still can, before my condition becomes too physically limiting. Cobblers. That's too easy and it's not really the reason at all. The simple truth is that there's not a single one of us who knows what life has in store for us, and I'm absolutely no different. If medical science has got little or no idea how my condition is going to progress, then how the hell am I going to? Why worry about what MS may or may not do to me when I could be hit by a bus tomorrow? Any of us could be.

My diagnosis has certainly been a kick up the arse: it's helped me to realise that life is too short to keep putting off until tomorrow the things that we really want to do with our lives. Who really wants to spend all their time stuck in the drudgery of a corporate desk job? It's a living and it passes the time, but it's certainly not something that I live for. I'm lucky: my critical illness insurance payout has given us the financial breathing space to make something like this possible; to enable us to afford to take the time off work and to go and do those things that we've always wanted to do. It's a fantastic opportunity and I'm not going to pass it up.

I've got some time in the office yet before I go, so I'm trying not to get too excited, but we've now got a map of the world up in our kitchen and we're about to get down to some serious planning.....it's really happening.

It's time to step off the treadmill.

where is my mind?

"So was there anything else?"

I was in my regular six-monthly session with my MS Nurse. If you have multiple sclerosis, then the network of MS Nurses - that suddenly seems to appear as you are diagnosed - becomes the absolute centre of your medical world and of your contact with the NHS. Whatever you need, whether that's an appointment, advice, treatment or simply a shoulder to cry on, the MS Nurses are just a phonecall away. Where consultant neurologists and other doctors sometimes seem to come from another planet where empathy and human understanding are in short supply, the MS Nurses also provide a reassuringly human face to the monolith that is the National Health Service.

Today's appointment was a simple follow-up to make sure that I was okay and that I was coping alright with the injections that I have now been doing for six months. My doctors have thus far been extremely tight-lipped in front of me about my case and they seem to be absolutely determined to avoid using the phrase "multiple sclerosis" to label my condition, preferring instead to hide behind "demyelinating disease". To date, the only doctor to use "MS" when talking about my condition was the guy who saw me after the lumbar puncture and who casually gave me my results in a waiting room of patients (the nurse said she'd be having a word with him about that...). All of my neurologists have steadfastly and carefully stayed away from it, to the extent that they rarely actually give me the results of the tests that I have done at all, preferring to generalise. As a result, I don't actually know what type of MS I have. Relapsing-remitting is the most common, and even in the absence of obvious relapses, I'm assuming it's that, but for all I know it could also be primary-progressive or something else.

Today's session with my MS Nurse was priceless then, if only because it gave me a chance to have a look at the letters the doctors have been sending each other about my condition: my blood tests show that my liver function has been okay since I started on the beta-interferon but my haemoglobin levels have been falling and I'm now slightly anaemic. My evoked potentials test showed mainly that they don't have "normal" readings for a man of my height, but that the tests showed a slower passage of nerve signals up one leg than up another, indicating demyelination. The lumbar puncture showed oligoclonal banding in the proteins also indicating demyelination. A letter from one consultant to my GP showed that I have been classified as having relapsing-remitting MS..... all good, useful information that no one thought fit to tell me about until I saw my MS Nurse.

So apart from the blurring in my right eye, the general ups-and-downs of the numbness and tingling in my body and the weakness in my arms and shoulders, was there anything else I wanted to mention to the nurse?

Well... as it happens, yes there was. I wasn't really sure how to say this, and I wasn't sure whether this was all in my head or not, so in the end I just came right out with it: I've started to notice, or I think I've started to notice, some problems with my memory. I have an excellent memory, in the main, but just recently I have found it oddly difficult to recall one or two things: people's names, a system that I used to work with. Nothing much, you might think, and feasibly things I might just have forgotten. But then again, it is unusual for me, and not a little disconcerting too.... and it's one of the symptoms of multiple sclerosis. I have so far been able to handle all of the physical symptoms that this condition has managed to throw at me. I know I haven't been all that badly affected yet, relatively speaking, but what I've had, I've coped with. Physical symptoms are only that, aren't they? They only affect your body. Sure, I'd feel pretty down if I lost the ability to run, never mind the ability to walk, but as long as you have all your marbles, then at least you have something. I pride myself on my intellect, and the idea that I might be beginning to lose some of those marbles I prize so highly, is a very, very frightening thought.

So I mentioned it.

And now I am going to be seeing a neuropsychologist.

As C. was there too today, I imagine that I'm also going to be getting some kind of brain training game thing for Christmas. I've managed to happily avoid sudoku all of my life so far, let's hope that I manage to avoid it for a bit longer, eh?

high/low

MS is a right barrel of laughs, I can tell you. One of the things that I'm discovering is that I never quite know what's going to happen next, or indeed what to make of it all. That's true for everyone else, of course, but at the moment my life seems to be a rollercoaster of minor surprises and little humps in the road: sleeping policemen on the highway of life, if you like.

I went out running as usual on Saturday morning. Nothing unusual in that, and since the training for the half marathon, I've been trying to make a bit of an effort to keep the mileage up on at least one of my weekly runs. More often than not, that longer run takes place on a Saturday lunchtime when time pressures are fewer. I had a bit of a lie-in as usual, gently sounded out the morning-after impact of a night spent at the Nottingham beer festival, and then headed out the door. It was a lovely day, and I actually quite enjoyed the 6.70 mile route I took out along the river, even though I ran it the wrong way around (is it just me who normally follows my normal running routes the same way around? It just feels wrong if I do them back-to-front...).

About a mile from home, I noticed that I was losing sensation in my bottom lip. In the context of the numbness I feel elsewhere in my body, it wasn't really anything too dramatic, and I wasn't too worried about it, but I felt it slowly increasing in its (lack of) intensity as I continued to head home. By the time I set foot through the front door, I had lost a good deal of the feeling in the lower part of my cheeks too: I felt a little like I was at the dentists and about to have a filling put in.

Over the course of the next few hours, feeling returned, but it does leave a lingering feeling of "what's next"?

The answer wasn't long in making itself known, and I found my usual Sunday swim hampered by a loss of power across my upper arms and shoulders. This isn't new, but it seems to come and go unpredictably, and naturally made my swim -- an exercise I do specifically to exercise those muscles -- rather more bothersome than usual.

And then this morning I woke up with a blurry eye. I've talked about this before, but a visit to my eye doctor last week has now shown that my eyes and their implanted lenses are extremely healthy and working very well. Under normal conditions, my vision is excellent - much better than average. This blurriness then, is something of a mystery. My optic nerve apparently looks good, but it now seems certain that this sporadic blurriness is being caused by old nerve damage. Something they don't tell you, it now seems, is that you can suffer neurological damage that you don't notice at the time, but which leaves permanent damage. This blurriness is a classic sign, apparently. It's not there all the time, and even when it is there, it's not too annoying... but given that it's never going to entirely go away, that's probably just as well. Actually, given the choice of a problem with my eye, my implants or a nerve problem, this is probably the easiest one to deal with as I have no choice but to get on with things. No intervention will make any difference, so I can just try to ignore it and move on. Hey ho.

I don't need to be told that, in the grand scheme of things, a weekend where I have been able to run, swim and attend a beer festival doesn't sound like one where I have been too greatly inconvenienced by my condition. And I haven't been. Trust me, I'm very much aware of that already; every painful run I go on is now precious to me in its own way simply because I can still run. But what's next? There's no way of knowing, and nothing anyone could do about it even if there was. I know that. There's nothing to be gained by worrying about what my future might, or might not, hold.....but...well, you have to wonder, don't you?

It's a right old barrel of laughs, this dear old surprise-a-minute, never-saw-that-one-coming condition of mine.

whatever you do, don't tell anyone....

When I was writing the blurb to go on our JustGiving page, I deliberately erred on the side of caution in how I described why we'd chosen the MS Society as the charity we were supporting:

"MS is a disease that has recently touched our lives...."

Perhaps a little coy. My MS isn't exactly a secret, but it's also not something that I'm going out of my way to advertise to all and sundry. I'm all for helping shake off people's preconceptions, but I am also aware that, for people who don't know me all that well, it could easily be the thing that defines me for them. As if to prove the point, one of C's colleagues was asking her about the half marathon and why we were running for the MS Society, and when he was told, he was all.... "Oh, but I saw him the other day and he looked fine".

I was conscious that I was likely to be touting the page at all sorts of people, and I decided that I wanted to tell people -- or not tell them -- about my MS on my own terms... and not via a casual remark on a charity website.

As it turns out, what I'd written was still enough to get a few people curious. Most were content to put their hands into their pockets without probing any deeper, but some were interested enough to try fishing (but not outright asking) for more information, and one or two quietly managed to read between the lines and approached me for a word. Interestingly, in every case, the people who approached me had also had their lives touched by MS: either because a close member of their family was a sufferer, or because they themselves had it. I already know of a couple of people in the office whose lives have been affected by MS in this way, but I was still very surprised when on particular colleague of mine approached me and revealed that she had MS and would be more than happy to speak to whoever it was that I knew who was suffering.

Surprised? Why would I be surprised? Haven't I been going on and on about how MS is a disease that is often invisible? Was I not just mildly disdainful, a mere two paragraphs above, about one of C's colleagues who remarked that I was looking surprisingly well? Just goes to show, eh? Seems we all have preconceptions about multiple sclerosis and multiple sclerosis sufferers, me included. Well, I've worked with this lady for several years now, and not only is she superb at her job, but she is also one of those lovely, warm friendly types who are a real joy to work with. She's about the same age as me, and since I've worked with her, she has married, had two kids and run a half marathon (for the MS Society, I discover....). And yet apparently she was diagnosed with MS when she was in her early 20s and a student - which must have been quite a shock to the system, to say the least. We had lunch together on Monday and swapped notes (she doesn't actually know anyone else with MS). It turns out that she has had a couple of relapses since diagnosis (including the temporary loss of sight in one eye), but is generally doing quite well and is not on any disease modifying drug therapy. It turns out that we even see the same neurologist.....

Who knew that people with MS might turn out to be people just like me? It was good to talk. Maybe we should form a club or something? Perhaps with a special badge, or a secret handshake?

Maybe not, eh?

---

Just a quick update on our fundraising, the total raised for MS Society currently stands at £2,775 with a further £489.36 of Gift Aid. That gives us a grand total of £3,264.36.

....I reckon that LB, C and I have done pretty well there, eh?

Thanks to you all for your generosity.

You can still donate, actually..... what are you waiting for?

do you see what I see?

One of the most common presenting symptoms of multiple sclerosis is optic neuritis. To quote wikipedia:

"Major symptoms are sudden loss of vision (partial or complete), or sudden blurred or "foggy" vision, and pain on movement of the affected eye. Many patients with optic neuritis may lose some of their color vision in the affected eye, with colors appearing subtly washed out compared to the other eye. A study found that 92.2% of patients experienced pain, which actually preceded the visual loss in 39.5% of cases"

Apparently, up to 50% of patients with MS will develop an episode of optic neuritis, and 20-30% of the time optic neuritis is the presenting sign of MS. As I know all too well, MS can somewhat slippery to diagnose at the best of times. Compared to symptoms as generalised and hard to nail down as numbness and pins & needles, it's really not too hard to understand why a sudden disturbance in your vision might be the thing that really scares someone off to their doctor and onwards to their neurologist.

...unless, of course, you've recently had your eyes cracked open and had corrective lens implants clipped onto the front of your irises..... in which case a blurring of your vision may not automatically have you reaching for your neurologist's phone number.

Since I had my eyes operated on in July 2008, I would say that my eyesight has been brilliant more than 90% of the time. I only say 90% because, although I don't regret the procedure for an instant, there have been one or two little niggles. The lens in my right eye is smaller than the lens in my left. The reason for this was that I needed a rigid lens in that eye to correct an astigmatism, and the rigid lens couldn't be rolled up before insertion like the other lens, and so needed to be smaller. Because it's smaller, in some light conditions my pupil approaches the edge of the lens and I get some leakage of light. It's not too much of a big deal, and once I got used to it, my brain basically tuned it out. But it's there. My right eye also seems to react more slowly to changing light conditions, meaning that my vision becomes slightly blurred when I move from very bright conditions to dimmer conditions, and once in a while my pupil seems to get "stuck", and takes a bit longer to adjust. Again, not a very big deal.... but it's there.

I also have an obsessive personality, and once in a while, my brain finds something tiny to latch onto to the exclusion of almost everything else. In the old days, this was things like the fit of my glasses or imaginary scratches on my lenses. Nowadays, sometimes it's my new eyes. Initially I fixated on some barely perceptible hazing that occurred in my left eye, caused by skin cells on the implant that my brain - if left to its own devices - would quickly tune out. When I finally let it go, the hazing quickly disappeared. In addition, once in a while, I'll notice that the correction of my right eye is fractionally less good than the correction in my left. I'll sometimes sit for a while, alternately closing each eye and comparing what I see. Then I'll realise that I have perfect vision with both eyes together, and perfectly acceptable vision even in my 'weaker' eye, and I'll get over myself and find something else to worry about.

So, with that in mind, you might understand why, when I start to experience more regular blurring in one of my eyes, I don't immediately assume that it is the onset of optic neuritis. Over the last couple of weeks, this is exactly what has been happening: the blurring in my right eye has been getting steadily worse. Where before it only happened from time to time, now it seems to be happening more regularly, and although my vision still tends to improve in brighter light, that doesn't now seem to be always the case. I've also noticed that, when blurry, my eyesight is less blurry at the periphery of my vision than it is at the centre. Not surprisingly, I've also been getting nagging tension headaches behind my eyes too. Of course, it's possible that it's still all in my head, or that there is some kind of mechanical problem with my implant.... but I've also started to come to terms with the fact that there might also be a neurological explanation.

I really don't know how I feel about that. Let's review the possible outcomes: if it's all in my head, I may well be crazy; if it's a problem with the implant inside my eye, then it could require surgical correction (or removal)....or it could be further neurological evidence that my MS is progressing.

What kind of options are they?

Well, one way or another, I guess I'll find out more on Friday - I've got an appointment go get my eyes checked up. It's a regular appointment that was originally supposed to happen in November last year, then in July and then last Friday, when I sat in a hospital waiting room for two pointless hours for my doctor to show up..... well, what kind of service do you expect when you go private? If the appointment does nothing else, it should help start the process of elimination.

Funnily enough, since the possibility occurred to me that this might be caused by something that is totally outside of my control and nothing to do with any choices I've made or how nuts or otherwise I may be, I've found the whole thing a lot easier to deal with.

Funny things, brains.

somehow it always collects to one big melting pot....

Yesterday morning, with exactly one week to go before the start of the half marathon, I began to get myself ready for my last big training run. I'll have a couple of short - 30 minute - tuning runs before I get to the start line on Sunday, but this was one final sixty minute thrash before I rest up for the big day.

There was just one small problem: I felt terrible.

I'd woken up on Saturday morning with a headache that got steadily worse through the day and took away first my appetite and then my desire to do anything much more than just go back to bed. Now, my body is not exactly a temple, but the plan was to stop drinking entirely for the seven days in the run up to the race. I'm not sure if a total abstinence from alcohol would significantly enhance my performance - I don't drink that much - but I was pretty sure it couldn't hurt. A couple of drinks on Friday and Saturday and then off the sauce until after the race. That was the plan, anyway. Unfortunately, it didn't quite work out like that. I'd only had a couple of small glasses of wine on Friday night, so my headache surely wasn't caused by the booze. Now it was dragging out into Saturday though and I no longer felt like drinking anything stronger than water, I was starting to feel positively resentful: how unfair that I was going to be deprived of even a moderate weekend tipple before my self-imposed alcohol ban. Feeling distinctly sorry for myself, I couldn't help but wonder where the justice was in that.

Things got worse when I awoke to find the headache was still there on Sunday morning. Worse yet: now it was accompanied by a feeling of crippling fatigue that made even getting out of bed something of a struggle. Where a headache might be a symptom of MS, fatigue definitely is one of my warning signs, although I haven't worked out yet what triggers it. You might think that it would be directly related to the amount of physical exertion I put in, but actually it doesn't seem to be. I seem to be able to physically push my body quite hard, but it's often smaller exertions that seem to really clobber me: a few weeks ago it was an early start and a long(-ish) drive that had me struggling to hold my arms up straight on the steering wheel; last week it was the couple of hours I spent in one of our warehouses doing nothing more physical than observing transactions.... neither of those activities should be as taxing on the body as a 12 mile run, but both of them left me feeling bone weary and with shoulders actually trembling with fatigue. I'm fairly sure that all of this extra mileage is taking its toll on my body, but it's not a straightforward case of cause and effect, with the running being linked directly to the fatigue.

I'm nothing if not determined though - probably to a fault. Whatever was making me feel fatigued was not going to stop me getting up and going out for my last long training run. I dragged myself out of bed, got into my running gear, stuck "Death Magnetic" onto my iPod and set off out the door.

Almost immediately I knew this was going to be difficult. If you're a runner, you'll probably know this feeling, but there are some days, some runs, where everything feels great, and - more often - other runs where everything feels much harder than usual. Things often get easier after the first half mile or so as your body eases into the exertion, but it was quickly clear that this run was going to be a real struggle from start to finish: my muscles felt okay and relatively loose after a couple of days off, but my head was aching and my shoulder and arms felt weak and useless.

I ran for a little over an hour, in the end. I covered 6.51 miles at a decent overall pace of 9.19 minutes per mile... about the same as usual if not actually a little faster. But it was hard. In fact, it was a real struggle putting one foot in front of the other. I usually listen to music to help me to focus my mind on something other than what I'm doing; with each song taking me another four or five minutes down the road. Today, not even Metallica was helping take my mind away from how difficult it all felt and how much more running I had to do before I could stop. I got home okay, but I am really not relishing dragging myself around 13 miles-or so next weekend if I feel anything like that on the starting line. I also have the words of one of my MS Nurses ringing around my head: MS is not something you can just "push through" and you have to learn to listen to your body. Was I listening to my body by dragging it out for a run when all it wanted to do was to rest? No. Will I listen to it if it tells me the same thing before Sunday's race? No. When will I learn that it's not always a case of mind over matter?

Perhaps it was just a bad day; a one-off. Maybe next week I will bounce my way around the half marathon course in something approaching two hours and wonder what all the fuss was about. I hope so. I currently feel very mortal - although sadly not in the Scottish sense of being profoundly drunk, either. I'm officially off the sauce, remember... and I've still got that bloody headache too.

Pah.

----

There is one perfectly good reason to drag myself around the course next week, and one thing that makes it all feel worthwhile: all the money we've raised for the MS Society. You've all been amazingly generous so far, but there's still time to sponsor us yet. We're hoping to raise more than £2,000 overall and we're well on the way towards that target..... Click here for more details and to sponsor us.

if you know when to take them....

At about 07:30 this morning, just as I was about to get into the shower, there was a loud bang on the front door. Cursing, I quickly grabbed a towel and ran down the stairs to see what was going on. I unlocked, opened up and cautiously peered out from behind the door - after all, who wants to be confronted at that time of the morning by a semi-naked man? It was the postman, of course, clutching a small plastic envelope. I scrawled my signature approximately on his little digital screen and took the delivery. I opened it up, and was stunned by what I saw: it was short letter with a cheque stapled to the bottom.

The cheque was made out to a sum that equates to about 3.5 years salary.

Tax free.

My mind flashed back about five or six years, and I could see myself flicking through the brochure that came with my critical illness insurance. Let's look down the list of conditions and see what I could maybe tolerate in order to get a payout: obviously you don't want something nasty like cancer, but could I lose a limb? An eye? All good fun, and then I filed the paperwork away and thought nothing more of it. Who really thinks that there may come a time when they will be diagnosed with one of the conditions on that list? Who would really want to be?

To be honest, I was only dimly aware that you might be well advised to take out life and critical illness insurance when you take out a mortgage. Getting the mortgage itself was a big enough step for me. Luckily for me, I was well advised, and my very diligent and professional financial advisor made sure that, as well as getting an excellent deal on our mortgage, we signed all the necessary paperwork and got ourselves properly covered. In fact, I'm not sure I can ever thank LB enough for his foresight.

....And now my critical illness policy has paid out. Without any great fuss or fanfare, my insurance company has paid up the full amount less than a month after they received my claim form, at a stroke making all the inconvenience of that lumbar puncture worth the bother.

I stared at the cheque for a few minutes. Then I sat down and stared at it some more.

Then I went to work.

Then I came home from work and after a game of football and I stared at it again.

That's quite a lot of money.

That money is not consolation or compensation for having multiple sclerosis, but it does offer me financial security. More than that: it presents me with some new options and opens up some interesting choices. I have MS, but at the moment I'm still relatively unaffected. Who knows what will happen tomorrow, or in a year's time, or in five years time.... that's was true before my diagnosis, but somehow the present feels all the more precious to me. Every mile that I run, every game of football that I play (even ones where I feel rubbish, as I did tonight)... it all feels like something to be cherished because I really don't know how long I will be able to play. I'm not worried about my future, really. Good job really, as there's not a damn thing I can do about it. I might be one of the 'lucky' MS sufferers who are barely affected by the condition throughout their lives. I might not be. No one can tell and there's not much point worrying about it. I do wonder, however, if I really want to spend my the bulk of my time sat at a desk doing a job that is hardly the passion of my life.

Surely there are much better things I should be doing with my life? I want to go to Australia again; I want to go to New Zealand; I want to go back to South America; I want to travel in Africa and to go on a walking safari; I want to learn how to scuba dive; I want to see whales and dolphins and sharks; I want to see lions and tigers and elephants; I want to travel around the great cities of Europe and to see the works of the Great Masters and the soaring cathedrals. There are so many better things I could be doing than sitting at my desk as a tiny cog in the wheels of a big company. Perhaps this money is my opportunity to get out and do some of those things whilst I still can.

The big question, I suppose, is whether or not I am brave enough to seize that opportunity.

Hmm.

take it to the limit one more time....

This isn't an easy thing for me to admit, but I'm struggling physically a bit at the moment. I'm running the Robin Hood Half Marathon in a few weeks time, and I've been trying my best to keep to a training programme. After that enforced two week break where I was flat on my back and unable to stand up, nevermind to get out the door for a run, I have something of a feeling of needing to do some catching up. I'm reasonably active most of the year, but over the last couple of months, my mileage has been steadily rising. Last Saturday, I did some hill interval running: 1 minute running up a steep hill, followed by 1 minute running down the hill, repeated twelve times. This was followed on Sunday by a nine mile run. For the last few miles of that run, the muscles in my legs stiffened up appreciably, and in the last mile, I actually started dragging my left leg a bit. Not good, but probably the result of three separate factors coming together: the layoff, the increased mileage and my MS.

I rested on Monday, but went out on a five mile run on the Tuesday night. This was perhaps a mistake: my muscles were still very sore, and it was something of a struggle to drag myself around (although I did, of course... still managing to clock in at 9.22 minutes per mile, below my nominal goal of 10 minute miles). I rested again on Wednesday, but went swimming this evening. This is usually the one form of exercise that I do that keeps the muscles of my upper body moving and hopefully helps to stave off wastage. With the increase in my running, I haven't been as often recently (I only went today because I couldn't get to football), and this evening I could really feel the stiffness across my shoulders as well as the lingering soreness from my runs in my legs. It was really hard work and I think I'll have another day off tomorrow before going back through the whole cycle next week.

The half marathon is on 13th September, and I'm looking forward to it. Between the two of us, C and I are hoping to raise £1000 for the MS Society - a cause, of course, that is close to my heart. I should be aerobically fit enough (my standing heart rate is something around 40 bpm), but I'm starting to worry if I'm going to be physically up to it. My willpower is good, I know that: I'm more than capable of dragging myself out for a run in any weather and more-or-less however I'm feeling. This is different though; I don't think that this is something that I can (or should) be pushing through; that dragging foot is a sign of the physical limits of my body that I'm going to have to learn to respect, no matter how hard or inconvenient I may find it. This is not an especially easy pill for me to swallow, and it makes me feel the thing that I fear the most: lessened by my condition. It also inevitably makes me to wonder how much more of this I'm going to have to learn to cope with..... something nobody can answer simply because there are no certain outcomes.

Of course, all these things are relative, and I'm very aware that although I may be having a few problems at the moment, there are people far worse off than me. I'm worrying about the impact a 9 mile run had on my body; some people can barely make it out of the front door unaided. I'm very aware and very grateful for what I still have.

Even so.... I don't like feeling limited.

guilt by implication, by association....

A historic judgement was made the other day that could remove the fear of prosecution from people travelling abroad to help relatives seeking an assisted suicide. I've written about Debbie Purdy before. To plagiarise myself:

"Debbie Purdy was diagnosed with primary progressive MS in 1995; she can no longer walk and is gradually losing the strength in her upper body. Her condition is only going to get worse, and if/when her condition becomes unbearable, she would like her husband to accompany her to a clinic in Switerland where she can end her own life in comfort and with dignity. Her dilemma, and the reason that she is going to court, is that she would like her husband Omar to be by her side on the trip, but it is not clear in British law whether or not he would become liable for prosecution on his return to the UK for assisting in a suicide."

The Law Lords have now unanimously ruled in Purdy's favour and the Director of Public Prosecutions has been ordered to immediately draw up a policy that would spell out when prosecutions would and would not be pursued - in other words, providing people like Purdy with the clarity they need to help them make their decision.

I'm not going to get into the rights and wrongs of this case, although instinctively I feel that I agree with Matthew Parris:

"I can’t tell you how simple I find these arguments: so simple that I’ve hardly bothered to write about the issue. Suicide is the greatest of human freedoms, underwriting all the others, for it gives us the possibility of defying every thing and every one there is. The possibility of suicide is what makes life voluntary and each new day an act of will. No wonder the faith community gnash their teeth at suicide. God Himself, if He existed, would gnash His teeth at suicide: the supreme act of defiance, the final raspberry. The knowledge that I’m here by choice, that every breath I take I take by choice, injects into my soul a transcendent joy. That we can let go whenever we want is for me the deepest sort of thrill. People should be able to choose. Obviously. And if they choose the end but seek help with the means, they should be able to. Obviously. End of argument."

Parris actually goes onto say that he is opposed to legalising assisted suicide - on the grounds that this means that someone has to officially decide who can, and who cannot, die:

"It is one thing for the State to decline, at its discretion, to prosecute someone who has killed without authority. It is quite another thing for the State to issue an authority to kill. We do best, I think, to stay on that first, more limited, ground."

Interesting, but the rights and wrongs of assisted suicide are not what has caught my attention most about this whole debate. Oh no. Perhaps not surprisingly, as a sufferer myself, I've been dismayed by the way that the coverage of the debate is presenting Multiple Sclerosis. MS, according to every single news report that I have seen, is a disease so awful that you will want to kill yourself. If you have MS, then your life is all downhill from here. MS will strip you of your mobility, your dignity and then it will kill you.

I know that this isn't the main thrust of these stories, but it is the - perhaps unintended - insinuation. Coverage like this will surely only help to reinforce people's existing misconceptions of MS. They're bad enough already: remember that poll the MS Society carried out back in April?

"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."

Worse yet, can you imagine how you would feel if you read all this kind of coverage of MS at a time when you were just being diagnosed with it? You're likely to already be feeling pretty vulnerable, but how is seeing MS being linked so closely with all this coverage of assisted suicide going to make you feel? Not great, I would think.

I have MS. It's not something that I advertise, especially, but neither is it a secret. If someone asks me about it or, as they did today, asks a few direct questions about why I had a lumbar puncture, then I'll tell them. My symptoms are not obvious: I don't use a walking stick or a wheelchair and I'm still able to go running and to play football, but when some people - not all by any means - hear that I have MS, I can almost see their preconceptions slotting into place before my eyes. People do not really know what MS is. Why would they? Until I started suffering the symptoms and it became a possible diagnosis, I didn't really know anything about it either.

I'm probably being oversensitive, but is it too much to hope for that we might perhaps have been able to have the same interesting debate about assisted suicide without focusing on Debbie Purdy's particular condition? Or perhaps to have an explanation of what Primary Progressive MS is and that there are different types of MS and that every case is different? That there's no certainty of outcome? That almost no one actually dies of MS and that the average lifespan for someone with MS is almost (almost!) the same as for everyone else?

Is that too much to ask for?

In a word: yes. I'm sure it probably is. Lest we forget, you can probably also subsititute the "MS" in every sentence above with the name of any other disease or condition. Can we manage to be sensitive about all of them all of the time do you think?

Hmm.

Whatever next? Insisting on having a footnote on all meeting minutes indicating that the chairman could be a woman as well as a man and that the title doesn't necessarily denote the gender of the occupant? Well, it's either that or just calling them "the chair" or "chairperson" and that would just be silly........

It's political correctness gone mad, I tell you.

Perhaps this is where the internet really comes into its own. The newspapers and TV coverage may be painting a story one way, but if you're interested enough to go and look up Multiple Sclerosis on wikipedia, you'll find a really well-written and informative article. I know that not all wikipedia entries can be trusted, but this one has been pulled out as being one of the very best, and it's a great place to start. There are some very good information sites run by people like the MS Society, but there's also a whole world of more personal information contained within blogs (like this one), community sites (like this one) and even on dear old Twitter. I'm not bigging myself up here especially, but I know that I have taken great comfort from reading about and sharing other people's experiences. The process of being diagnosed, deciding what drugs to take and how to inject them, what to ask my neurologist, what a lumbar puncture will be like.... priceless human contact that all helps to dispel the uncertainty and to create a feeling that you're not in this on your own. I'm not setting out to preach, but if anyone happens to google their way here looking for information, then maybe, just maybe, they will be comforted and informed by what they read and might just have some of the bad juju of misinformation and ignorance dispelled.

...or they'll just learn a load of useless crap about whatever transient fluff is passing across my monkey-brain at any given time.

One or the other.

I found out....

Four years in the "limboland" of no firm clinical diagnosis finally ended today in the expected anticlimax. Entirely appropriately, the news was tossed out as an afterthought and with absolutely no fanfare in the decidedly unglamorous setting of a hospital ward for outpatients, in the open seating area and in full view - and earshot - of all the other people attending the clinic.

I was actually attending today's clinic as a follow-up to the lumbar puncture I had some ten days ago, to try to understand why my head still hurt. I had no expectation that I was going to get any results: after more than a week of being unable to stand up without being completely incapacitated by a pounding headache, all I really wanted was to get my life back to normal as quickly as possible; to do all those things you usually take for granted - to run, to swim....hell, even going to work would be an improvement on lying on the bed unable to get up.

I actually started feeling better at some point on Friday evening, and this slow improvement continued over the rest of the weekend, so I was optimistic that the consultant at the clinic was going to give me the all-clear. My symptoms were caused by a lowering of the pressure in my cerebrospinal fluid as a direct result of the lumbar puncture. Apparently, it's not all that uncommon for these symptoms to last for up to two weeks after the procedure. Now they tell me. As the consultant acknowledged today, perhaps they shouldn't really downplay the impact of a lumbar puncture to their patients before they carry out the procedure. Hmmm, perhaps not. Perhaps if I'd known the possible impact it could have on me, then I wouldn't have gone on that trip down to Milton Keynes the day after the procedure, and maybe I could have spared myself that trip to A&E.... still, it's done now, and apparently it affects different people in different ways.

In some ways, my visit to the clinic today was a waste of time: we arrived on time and then waited nearly an hour before the consultant turned up*, saw I was sitting upright and not lying flat out, and then sent me home after a short chat and without bothering to examine me. What did I do for a living? Hmm. Would work allow me to perhaps work the rest of the week as half days? I was a runner? Hmm. I could start running half a mile at a time, building up over time and making absolutely sure that it didn't have a negative impact on me. Oh, and the results of your lumbar puncture, by the way, are entirely consistent with what we would expect from multiple sclerosis. Look after yourself. Goodbye.

You have to laugh really. Maybe I should be annoyed at the way the news was delivered in such an offhand manner after so many years of uncertainty. Shouldn't it be a bigger deal than that? When you're told once and for all that you are definitely suffering from an incurable and degenerative neurological condition, shouldn't they sit you down in a private room and at least offer you a cup of tea or something? A biscuit, perhaps, or would that be pushing it too far? Surely to goodness it's not something you should tell anyone offhand, when they're surrounded by strangers in an outpatients' waiting room? I could be annoyed by that, I suppose, but what would be the point? It's hardly new news, is it? I was de facto diagnosed in March this year, and in the eyes of the NHS and for the purposes of receiving treatment, I have officially been suffering from MS since then. Why the hell should I care how and where I get told that now?

If I wanted to be annoyed about something, I suppose I could choose be irritated that I have been through a painful diagnostic procedure, one that has literally knocked me off my feet for more than a week, only to be told something that I already knew..... but actually I didn't really know. Not for sure, anyway. A 'de facto' diagnosis is not necessarily the same thing as an actual diagnosis, is it? It's a moot point, I suppose, but I wanted to get as much clarity as I could get about what I was or was not suffering from.

....and now I have it.

So I have spent my afternoon doing practical things like declaring my condition to the DVLA and submitting a critical illness insurance claim. Tomorrow, I will inject myself in the thigh with a dose of Avonex in an attempt to arrest the progression of my condition. I've been doing this every week for the last two months or so, of course, but now I will do it knowing that I am not 'de facto' suffering from anything. I have MS and it's time to move on with the rest of my life.... starting, tomorrow, with work (well, I've already done the half mile run, but you were expecting me to do that first, right?)

---

* The consultant, incidentally, was astonishingly young looking. Perhaps, as with dentists and policemen, you know you're getting old when even your senior neurological consultant in the hospital is probably younger than you.....

boring.

I've snoozed.
I've read my book.
I've caught up with the Sunday paper.
I've spoken to the doctor in the hospital and my MS Nurse.
I set up my 'Out of Office' assistant on my laptop.
I've watched those episodes of Empire of Cricket I had hanging around on Sky+
I've sat through the property porn trilogy grand slam:
-> Relocation, Relocation
-> Grand Designs
-> Property Snakes & Ladders
I've had a long chat with my brother on the phone.
I've persuaded my father not to come up and babysit me when C. is away.
I've injected myself (left leg).

Now I'm just bored.

I feel essentially fine unless I try to stand up for any period of time. I had to pop to the doctor for a blood test this morning, and although I was barely out of the house for half an hour, it was long enough for my head to start pounding, to start sweating, for my eyes to become sensitive to light.... the works. As soon as I got home, I went straight back to bed. The trouble is that it turns out there are only so many things you can do when you have to lie flat on your back.....and the latest medical thinking is that I'm going to have to try to keep myself busy like this until Friday, at which point I'll either be feeling better or I'll need to have the hole in my spinal cord patched (oh, and it's only now that the doctors tell me that using analgesic is possibly counter-productive to the healing process... although actually I've already stopped taking any as it doesn't seem to work on this headache anyway)

Still, the second Test against Australia and the Open Golf both start on Thursday morning, so that's something.

And I managed to turn the TV off before Big Brother started.

I'm not that bored.

Not yet, anyway.

F.R.U.S.T.R.A.T.I.N.G.

touch too much....

Having a needle inserted into your spinal cord and some cerebo-spinal fluid drained is never going to be an entirely trivial procedure, but rightly or wrongly, the doctor who successfully carried out my lumbar puncture on Thursday morning cheerfully set my expectation that I should be up and running - literally - by Friday. Less than an hour after that big needle had been removed from my spine, I was allowed to leave the hospital. As the local anesthetic wore off, I felt understandably sore around the small of my back, but I felt otherwise surprisingly good. I spent the rest of Thursday lying in bed as a precaution, but had no reason to think that I wasn't through the worst of it and that life might continue as normal from Friday onwards.

Yet here I am, four days later, still flat on my back in bed and facing up to the possibility that I may need to go back into hospital, be hooked up onto a drip and have the hole in my back surgically plugged up.

What happened?

I got up on Friday morning, picked up a couple of colleagues and drove down to Milton Keynes for a meeting. As I drove, my head started to ache a little, but I wasn't too worried. Then I started to sweat. Hmmm. By the time we arrived and were having a coffee before our meeting, I was starting to think that I might be in trouble: my eyes were becoming sensitive to the light; I was shivering; I was sweating; my ears were blocking up; I felt nauseous and my head was pounding. As the meeting kicked off, I was soon unable to concentrate on anything and was realising the extent of my folly to venture this far from home so soon after the procedure. I felt very, very vulnerable. In the end, I had to excuse myself from the meeting and, after a quick telephone conversation with my father, left my car keys with my colleagues and got a taxi to the Accident & Emergency department of the local hospital. One of the risks of a lumbar puncture is the chance that you will introduce infection directly into your spinal cord. Any problems, you are advised, and you need to seek medical attention as soon as you can.

Luckily for me, my parents only live a few miles away from Milton Keynes, and soon they joined me in A&E as I waited to see a doctor. As I sat still with my head between my knees, I began to feel better, but even so, I've rarely been so pleased to see them. As I was registered by the hospital, the nurse carrying out the initial checks marvelled at how low my pulse was -- 45 bpm. Was this normal? Was I on betablockers? No, that's my usual heartrate, and yes, I always look this pale.... As we spoke, an earwig scuttled across the floor between my feet. A&E was as chaotic as always, and I was forced to wait something like two hours before I was seen by a doctor, watching the ants scurrying around my feet. About par for the course, I thought. I felt pretty lousy, but I'm always aware that, in this situation, there are usually people arriving in ambulances whose need for a doctor is greater than mine. Perhaps that's what having a doctor for a father does for you. Not everyone was quite so understanding though, and the waiting room seemed to be filled with various sprained ankles and coughs that might have been better served seeing their own doctors, but who seemed to have an expectation that they would be seen as quickly as possible, even as people were being wheeled past them on stretchers. Several stomped off in a rage when they weren't seen as quickly as they felt they deserved. If you can stomp off in a huff, then you can probably afford to wait, right?

The doctor who did eventually see me was brilliant. He checked my blood pressure, temperature and pulse again (yes, it is always that low....) and carried out various other checks. He didn't think I had an infection, but asked why I'd needed the lumbar puncture in the first place. It turns out that a lumbar puncture can sometimes exacerbate an underlying condition and that I would be best to do absolutely nothing for the next couple of days and to keep a sharp eye on my temperature. Any sign of a fever and I should seek medical attention immediately. I did wonder why the first doctor hadn't mentioned any of this, but I was still much relieved and I spent the rest of the afternoon at my parent's house, listening to the cricket and dozing on the sofa. My colleagues had long since taken my car back up to Nottingham, so the new plan was that C. would catch a train to Milton Keynes from London and then my dad would give us both a lift home. With hindsight, I may have been foolish to go to that meeting in the first place, but I was at least fortunate that it was so close to my parents. Anywhere else, and I would have been really stranded.

The rest of the weekend was spent largely in bed. I had originally been planning to exercise as normal: hill intervals on Saturday and a 75 minute run on Sunday, but it quickly became clear that this was out of the question. Every time I tried to get up to do something (whether it was a trip to the farmer's market, to pick up the car or to attempt to rescue a mouse from the cat), my head started to pound, I would start to tremble and would break out into a sweat... each time forcing me to lie down until the pounding subsided. Exercise, it was obvious, was completely off the agenda. I felt fine this morning too, and was fully planning to go to work, but by the time I was halfway to the office in the car, I was forced to turn around by a thumping head and the growing nausea.

By now I was a little more concerned and I rang the hospital to find out what I should do: a doctor there told me that it sounded like I was suffering from low pressure in my spinal cord - not surprising given all the fluid that was drained on Thursday, but a little worrying that it was still troubling me four days later. The advice he gave me was, frustratingly, more bedrest, with the caution that if I didn't feel a sharp improvement soon, then I was going to need to come back into the hospital to be put onto a drip and to possibly have the hole in my back surgically filled. He didn't think I should go to work at all this week. Doctor one thought 24 hours. Doctor two thought a couple of days. Doctor three thinks a week. I'm not keen on asking Doctor four what he thinks.....

So here I am, sat in bed with a sore back and a bit of a headache, knowing that if I get up and try to do anything, I will rapidly feel much worse, but not knowing if I'm going to need to go back to hospital in the next couple of days or not. Bed rest? How am I supposed to cope with that? There isn't even another Test Match on until Thursday, and I'm already chafing about the lack of exercise. I'd even rather be at work than this. It's all rather frustrating..... a frustration made all the worse by the knowledge that the results of this test are not going to change anything much at all.

Rubbish.

high voltage...

The Patient Investigation Unit at QMC is located in ward D8 on the fourth floor of the west block. To be honest, it's amazing that anyone finds it at all, not just because the hospital is such an enormous rabbit warren of a building, but also because - if their track record with me is anything to go by - they don't take very much trouble to inform anyone that they actually have an appointment. I received notice of my first appointment with the PIU via a phonecall from one of the nurses telling me that it was, in fact, the day before. Did I not receive the letter? Er...no. I checked the address they had for me. It was fine. OK. They then tried to set up another appointment, but I was at Glastonbury. By now they had me down as a non-attender (I'm not sure they believed me when I told them that I hadn't received the appointment in the post), so they rang me to inform me of the dates. Just as well, really, as I didn't get that appointment either. I checked the address again, but it still seemed to be correct. Third time lucky, and in spite of another missing letter, a phone call ensured that this time I was actually going to turn up.

I was scheduled to have an Evoked Potentials test and a Lumbar Puncture. The EP would take about two hours, apparently, and the LP about 20 minutes, although I would then be obliged to lie flat for at least an hour afterwards. OK, let's just get this over with, shall we?

The Evoked Potentials test was something of a mystery to me. I knew it was something to do with using electrical signals to try to measure the damage to my nervous system, but I had no idea how it actually worked. Essentially, they measure your head (mine's massive, apparently), scrub some conducting gel onto some carefully marked spots on your skull and attach some electrodes. They then do the same with the back of each knee. You are attached to some sort of monitoring device, and then a nurse holds another electrode to a spot just below the ankle bone and they switch on the power. Electrical pulses are then thumped through your body, hard enough to make your big toe twitch rhythmically and to make you feel pretty uncomfortable. The aim of the exercise, apparently, is to measure the speed of the transmission of each pulse to my knee and then onwards to the brain. They then repeat the whole exercise for the other leg. The measurements recorded on the machine will now be compared with the average for someone of my height, and they will try to determine how much damage has been done to my nervous system. It didn't hurt, exactly, but it was a very strange sensation indeed; just about on the edge of bearable. Still, it didn't last too long and was all over in less than an hour, producing some interesting looking graphs that mean absolutely nothing to me. I'm sure someone will know what they mean....

Where the EP was a bit of an unknown quantity, I had a pretty fair idea of what a Lumbar Puncture was: they take a whacking great big needle, shove it between the vertebrae of your lumbar spine and drain some cerebrospinal fluid for analysis. I'm not squeamish about these things, but I do know that there can occasionally be serious complications arising from a lumbar puncture, and the leaflet they gave me before we started gave me a momentary pause for thought: the needle can damage nerves, causing shooting pains; it can hit a blood vessel, causing bleeding leading to brainstem compression and perhaps death; there is a risk of infection and meningitis..... hmmm. Luckily, I had my back to the doctor as she inserted the apparently huge needle into my spine and so I didn't see anything. Thanks to local anesthetic, I didn't really feel anything either, apart from a bit of pushing. C. tells me that the giant needle they used actually had a tap attached to it, the sort you see on a beer barrel, and once it was firmly lodged into my spinal column, it was used to fill several bottles with my spinal fluid for analysis.

It's a reasonably routine procedure, so they tell me, something that is carried out many times a day in this unit, but that doesn't make it straightforward. According to C, my doctor's face was a picture of focus and concentration as she worked on me. Good - when we're talking about a big needle being put into my spinal cord, frankly I'm to hear it! I can't say that the whole procedure was exactly comfortable, but neither was it especially uncomfortable, and the worst thing about it was the thought of that needle shoved into my back. Apparently, so the doctor told me, I was one of the least complicated LP's she'd done. Least complicated: an interesting turn of phrase, I thought. Apparently it's good that I am slim and have a flexible spine, as this makes it much easier to find the right spot and to slide the needle between vertebrae without too much trouble. Hooray for me - if you have to have a lumbar puncture, it's probably as well to be at the simpler end of the scale and to make it as easy as possible for your doctor, eh? A quick blood sample, and all that remained was to lie flat on my back for an hour and to drink plenty of fluid to try to ward off the apparently killer headache you can get as a result of the lowering of your CSF pressure. Easier said than done when you desperately need a pee, but I managed.

So, some 4 hours after we first arrived at the hospital, it was all over and I was free to go. The anesthetic was wearing off as I walked to the car, so I started to hobble around like an old man as the pain began to radiate from my back around my pelvic girdle, but no sign of a headache. Not yet, anyway. Lots of caffeine helps, apparently, so I've been chugging tea and coffee ever since. It's sore, but manageable.

On my way out of the hospital, I sneaked a peak at my notes. I think I now have an idea of why I'm not getting any post from them: although they keep reading my correct address back to me whenever I ask them about it, the address they have on the front of my notes is an address I haven't lived at for more than five years. Oh well, as long as they're good at the really important stuff involving really big needles and my spinal cord, eh?

Results are due in about three weeks time. I'm not expecting any great revelations as they've already told me I have MS, so what more do I really need to know?

Interesting times. Circumstances are turning me into quite the stoic.

where the dew drops cry and the cats meow.....

Diagnostic genius Dr Gregory House is able to diagnose multiple sclerosis in about ten seconds flat and have the patient on interferon about five minutes later. Job done.

Sadly, he's fictional.

My neurologist - steadfastly non-fictional - is a world-renowned expert on the subject, and it still took him more than 4 years before he felt able to even tentatively suggest that I should be diagnosed with MS. He was very, very careful to avoid saying that I actually had MS, but made it clear that he felt that I should be diagnosed with MS so that I would qualify under NICE guidelines for the treatment he felt I would benefit from.

To a certain extent, I can understand his reticence: MS is a disease with a thousand faces, it affects everyone differently and can be notoriously difficult to definitively diagnose. It's a heavy label to land on someone unless you are as sure as you can be. On the other hand, this lack of clarity can be very frustrating: when I began injecting myself, I received a letter from my neurologist to show at an airport to explain why I needed to take needles and syringes through customs. The letter explains that I have a "neurological illness". Perhaps it's patient confidentiality, but why so coy? I suppose it's something of a moot point, given that I've started a treatment that will hopefully stop my condition - whatever you want to call it - from getting any worse..... but I want to know. Apart from anything else, if I do have MS, then I have a legal obligation to report my condition to the DVLA so that they can revoke my driving licence and issue me with a temporary one every year. Not only that, but MS qualifies me to claim on my critical illness insurance. The money would not be consolation or compensation by any means, but it would be better than a poke in the eye with a sharp stick. But do I have MS or don't I? I'm not sure I know or if it even matters.

All of the diagnostic tests I've had so far seem to be just a little haphazard: the main test seems to mainly involve walking across a room heel-to-toe, touching my nose and watching the tip of a pen as it's moved slowly from left to right....apparently, that's enough for a skilled neurologist to decide the level of my disability. Even the blood tests and the MRI scans seem to leave lots of room for doubt. Is that a lesion on my brain, or is it a smudge on the negative? Who can say?

The bottom line, I suppose, is that the experts have decided that I have a neurological condition that requires treatment and I have started that treatment. The label you choose to put on that condition is really neither here nor there. Still, that said, when I talked this through with my neurologists, they sighed deeply and decided that I should have some more tests. Specifically, they decided that I should have an evoked potentials test and a lumbar puncture. I don't think they really expect these tests to conclusively tell them anything they don't already know... but they are expecting my insurance company to ask them if they have done them.

So, this Thursday, I will spend my day in hospital having electric currents passed through my body to measure the impedance in my nervous system for a couple of hours, and then I will have a large needle inserted into my spinal cord and have some spinal fluid extracted for analysis. I will then try to lie still for a couple of hours to try and ward off a killer headache. Both tests are expected to reveal nothing conclusive, but will be a tick in the box for the insurance company reviewing my case.

It sounds like a fun day, no?

House would have got me sorted in the blink of an eye. It would probably be something to do with some exotic mould growing behind the skirting board in the cupboard under the stairs or something.

Not for the first time, it appears that life is nothing at all like they show on TV.

spoonman....

The "Spoon Theory" is an attempt at an analogy to try explain to people how it feels to have an illness that might be invisible. It was first created by a lady called Christine Miserandino who was frustrated by people who couldn't understand why some days she needed a walking stick and struggled to do the simplest of things, but on other days seemed absolutely fine. You can read all about the theory here, but in a nutshell, the idea (first aired in a diner, when cutlery was plentifully at hand to illustrate the point) is that when you have an illness like Lupus (or like MS), you start the day with a number of "spoons". Every single thing that you do in that day, from the moment you get up to the moment you climb back into bed, every single thing has a cost in spoons. Once your spoons are gone, that's it... everything else is going to be very, very difficult. You can sometimes borrow from tomorrow's allocation of spoons, but if you do that then you'll pay the price the next day when you have fewer spoons to work with.

I've been lucky so far: I seem to have enough spoons on most days to still have the energy to go running and swimming and to play football, let alone to do all the other things we all take for granted, like getting up, going to work, cooking dinner and all of the rest of it. Yesterday for instance, I had a full diary of meetings, played a lacklustre hour of football and then went on a 30 minute run. Some days are different, though.

This morning I had to be up at a little after 5am to get myself down to Stevenage for a day of store visits. An early start, 5 hours in the car and a day spent standing up seems to have exacted a heavy toll on my spoon count. I was always going to be home in plenty of time to go for my normal Friday evening swim, but long before I pulled up in front of the house, it was clear I was going nowhere: the simple effort of keeping my hands on the steering wheel was making the muscles in my shoulders tremble. My spoons were all spent and swimming was quite simply out of the question. Even sitting on the sofa seemed to be incredibly draining and an early night seems very, very appealing.

I know I've got MS and that I now have to inject myself every week to try and slow down the progression of my condition, but I don't really feel sick. Not on most days, anyway. Today..... I'm not so sure.

the old familiar sting.....

Right. It's Tuesday night. Until last week, this was a perfectly normal night of the week. Now though, it's the night when I have to administer my weekly dose of Avonex: the medication that I inject into my thigh muscles in an attempt to slow down the progression of my MS.

It sounds pretty hardcore, I know....but I'm just an ordinary bloke There are thousands of people who have been doing this without fuss for a whole lot longer than my eight days. I'm nothing special and it's nothing that every single one of you wouldn't do yourselves if you had to. As Friedrich Nietzsche said, "that which does not kill us makes us stronger" (or was that Hetfield/Ulrich/Hammett/Trujillo?).

With that in mind, how about we set about a little bit of demystification?



Here's what you need:

-> a bottle of water, ibuprofen and paracetamol: injecting inteferon beta 1a into your body in an attempt to modify the behaviour of your immune system comes with side-effects. Most commonly, these take the form of headaches and flu-like symptoms in the hours immediately following your injection. Some people find these intolerable, and it is usually recommended that you pump yourself full of a cocktail of ibuprofen and paracetamol, inject yourself in the evening and then go to bed to try and sleep through it. It's also thought that drinking lots of water during the day can help minimise the side-effects. Well... it can't hurt, right?

-> some Avonex, a syringe, and a reasonably big needle: I chose to have bioset Avonex, the powdered form of the drug. I chose it for the simple reason that it doesn't need to be kept in the fridge and thus gives me the maximum flexibility. It does, of course, mean that the drug needs to be mixed up before it can be injected. Not an especially big deal, but you do need to make sure that it all dissolves okay and you're not shooting some lumpy powder into your thigh. The needle itself needs to be long enough to deliver the drug directly into the muscle.

-> A sharps box: to hygienically dispose of the used syringe and needle. You can't just chuck it in the bin, can you? This gets collected and incinerated by the same firm that delivers my syringes and stuff.



...oh, and you need at least one of these too.

You don't use sterilising swabs or anything - apparently they toughen up the skin - but you should probably go and have a shower before going any further. The 4.23 mile run I did before starting this evening is probably optional though.



So, you clip the vial with the powder in it onto the syringe. Then you inject the solution in the syringe into the vial and mix it up a little until it's all dissolved.



...then you draw the solution back into the syringe, remove the vial, put on the needle, take care to remove as much air from the syringe as possible.....and we're ready to go. Straighten your leg out to relax the muscle, use one hand to hold the skin tight - about a hand's length down from your hip - and then, with a few inches run-up to make sure you get through the skin..... push the needle into the muscle.



...like so.

It's a sharp needle, so it sinks in surprisingly easily and is completely painless. Push down the plunger with a slow, steady movement. Then we're done. All that remains is to carefully pull out the needle and chuck the whole lot in the sharps bin.

Done. That's it.

Nothing to it. And now you know.

No. Big. Deal.

Knowledge is power, people.....

after the flood all the colours came out....

Although I completely missed it, it was World MS Day on Wednesday last week.

Here's what they wanted to achieve:

"The first World MS Day will unite individuals, groups and organisations in the global MS movement. It will provide them with an opportunity to participate in events and activities that will raise awareness of MS as a global issue and raise funds to support the work of the movement including MS research".

Appropriately enough, given that it was the day when he scored a wonderful goal in the Champions League Final, Lionel Messi had this to say:

"Whenever I go out to the field, whenever I kick the ball and whenever I run to catch it, every step and every effort I make will be a tribute to the people who live with a much more difficult challenge, to fight every day against MS".

They've made a fantastic, thoughtful video too:



Of course, this is all very close to home for me, and that video actually brought a tear to my eye. I injected myself with my first dose of Avonex on Tuesday, and it's really brought home for me how much my life has changed and how quickly. I'm relatively unaffected at the moment, but this is a progressive condition, and the best that I can hope for is that things don't get any worse. Unless medical science turfs something up, I'm never going to get any better.

So, given the lack of other alternatives, perhaps we'd best get on with giving medical science a helping hand, eh? With that in mind, C. and I are going to be running the Robin Hood Half Marathon in Nottingham in September to raise money for the MS Society - it's not just for me, of course, but it's for everyone who is - and for everyone who will be - affected by this unpleasant condition. It's not just about the money, either - it's about awareness. MS is one of those conditions that people have heard of and probably have preconceptions about. But MS is a disease that has a thousand faces, and no one person will experience it in the same way as any other. The only way to challenge those preconceptions is by educating people about the disease; by telling them what it is and how it affects me. I can only speak for myself, of course, and of m own experience, but I have MS, and I've decided that it's not going to be a secret. I'm perhaps not going to wear a badge advertising the fact, but neither am I going to keep this as my dirty little secret. My syringes, sharps box and things were all delivered to work last week, and when anyone asked me what was in the big box, I just told them. When I felt a bit ropey on the morning after my injection and people asked why, I told them. Why lie? I'm not challenging anyone's preconceptions if I keep this all to myself. I refuse to be ashamed, and I'm not going to pretend that I feel rough because I had a good night out in the pub just because it's easier for everyone - including me - than the truth.

Our natty orange running vests have arrived from the MS Society now and training is well under way. As soon as we get a Just Giving page up and running, I'm going to be ceaselessly touting for sponsorship from now until the race is run. Just so you know, like.

shoot it up....

Things I have learned today:

-> That no matter how many times you practice injecting into a sponge, there's still something distinctly unsettling about holding a syringe with a 5cm long needle over your own thigh (and that even the thought of a 5cm long needle freaks lots of people out...)

-> That my wife stabs the needle into the practice sponge with just a touch too much gusto for comfort.

-> That when offered a count of three before plunging it into my leg, it's best to just bite the bullet and to go for it before the count reaches "two".

-> That if you give yourself enough of a run-up, and if you take care to relax your thigh muscle, the needle actually goes in silently and painlessly, and almost before you know where you are, you're done.

-> That a jab given like this takes about 4-5 hours to take effect. T

-> That this is also how long it takes for the side-effects to kick in, and is why you would normally administer the injection last thing at night, before you go to bed, rather than first thing in the morning, before you go to work.

-> That a 5 hour wait, not knowing how hard (or otherwise) you are going to be hit by side-effects, is a killer.

-> That, so far, a heady cocktail of ibuprofen and paracetamol seems to have been enough to limit the side-effects to a dull, fuzzy, throbbing head. Manageable enough, anyway, that I'm still in the office at 7pm and not in bed with a wet towel over my head.

-> Not yet, anyway.

An interesting day. I feel like I've acquired a new skill, albeit one that I never really expected to pick up, and one that I wish I didn't need..... but it's all gone okay so far, and that's as much as I could ask for, really.

It's only this first jab that needs to be supervised, so from next week, I'll be doing it from home and it will really be business as usual. I'll have to have regular bloodtests to make sure everything is okay (especially my liver function, apparently), and I'll follow up every so often with the MS Nurses and with the neurologists, but this is now officially just a once-weekly occurence in my normal, every day existence. I'll never really know if this is doing me any good as the drug is only licensed to (maybe) slow down the progression of the disease. The very best I can hope for is that I don't get any worse than I am now, and although that could be a slightly depressing thought if I chose to dwell on it, I think that it's still a whole lot better than doing nothing.

the needle and the damage done....

My drugs were delivered to the office a little after lunch this afternoon. I'd missed the call to my mobile, so received a call from one of the nice ladies on reception and quickly hurried round to pick up my stash.

I had absolutely no idea what to expect, but what I got was a pretty large blue box and a bright yellow sharps bin. The lady on reception - who I've known for years - was really curious and asked what it was. When I told her it was drugs and that I was going to have to start injecting myself, she asked what for. So I told her. She expressed sympathy, and then asked if I was going to be taking deliveries like this daily or weekly. Monthly, I said. Quick as a flash, she offered to make sure it all got received all right every month and that if I wasn't around to pick it up, she'd make sure it was locked up in reception rather than disappear into the mail system. I was quite touched, actually. It turns out that this lady was off work a few years ago with a brain hemorrhage, has some titanium bands inside her skull, and was extremely empathetic to my needs. She asked about who my neurologist was and how often I saw them, and then we had the following conversation:

"Of course, you know what's really good... as well as that stuff?" She nodded at my big blue box.
I raised an eyebrow quizzically, knowing where this was going but wondering if she was really going to say it in the reception of the Head Office of a big blue chip company.
"Cannabis"
"Right"
There we go, she said it. Well, it's been proven to work, right? Perhaps not in the reception of the business though, right?

[yes, I have edited this bit....]

Well, I certainly never expected to be offered cannabis under those circumstances - for medicinal use or otherwise. But isn't she great? I've always made a point of saying hello to her by name as I walk through reception every morning, but I must admit that's not quite the kind of return I was expecting, anyway.

So what's in the box?



And it is a very big box.

Slightly disappointingly, once you get through all of the packaging and the ice packs (which actually aren't required for this stuff), then all it contains is four individual packs like this one.



That's four doses - one month's supply - of bioset Avonex (in powder form, in the vial on the top right), a syringe filled with a solution (bottom, to be mixed with the powder and then loaded back up into the syringe ready for injecting) and a big bloody needle (top left).



Well, perhaps not massive, but still plenty big enough.

I've now got an appointment with the MS Nurses for 9am on Tuesday morning, at which point I will be taught how to mix the drug up properly and will then give myself my very first injection. I won't be using the gadget that shoots the needle into the muscle, either... I'll be doing it all by hand.

This suddenly all feels very, very real.