Life with MS – analogies

There seem to be analogies every which way you turn when you discuss MS with other (oh heck!) “sufferers”.

The most popular one must be the MS MonSter (see what I did with the letters?). The one that sits on your chest in the morning and stops you getting up, demands a piggyback if you travel anywhere, pokes you in the eyes, trips you up, ties extra knots in your shoelaces etc.

My very first post on this blog mentioned this fella. There is even an MS Society (UK) publication called “Shrinking the Monster” – the downloadable pdf of which I would link to if I could be bothered with their irksome, user-unfriendly website. It is actually, quite a useful and beautifully conceived document outlining various coping strategies for house-training the beast. (I’ll search it out and add to the links menu soon – I promise).

Another analogy I have mentioned before is the MS terrorist group, lying in wait within the central nervous system, ready to set off their explosives or kidnap your senses, sometimes causing permanent damage (like they did with my doublevision, the bastards).

Not a million miles away from that analogy is the immune system as Gestapo which I have heard bandied around a few times, though I can’t help thinking that the keystone cops is more accurate. It’s there to do a job, but ends up creating more havoc in it’s wake.

The graphic artist Johnny Hicklenton, who ironically I have mixed feelings about, likens his MS to being in a bad relationship. One day it’s all joie-de-vivre and happy happy, the next it won’t let him walk down the road to the shops, without causing him extreme pain.

My current thinking is from a perspective of someone in remission. MS to me right now, at this moment, is like living on a volcano. It has been a while since the last eruption, and my garden is starting to grow back (despite the solidified lava flow that I can see from the kitchen window). Things are generally good, but the odd rumble underfoot reminds me it’s only a matter of time.

ffffffaaaaaaaatiiiiiiiiiiiiguuuuuuueeeeeeeee…… er.. [ctrl-alt-del] Damn!.. Didn’t work.

I have been reading a recent issue of ms matters (quarterly MS Society magazine). It had invited readers as part of MS Week, what they thought was the most common misconceptions around the disease – usual stuff – wheelchairs; appearing to look well etc.

One of the more common misconceptions centred around fatigue, how it is generally percieved as being a bit tired or even plain laziness.

The only way I can describe full-on MS fatigue is, imagine you are working on a computer and you want to install a new program or you are downloading several megabytes of information and you PC crashes. Everything freezes, the egg-timer doesn’t look like it is ever going to be anything other than that indefinitely.

Having MS fatigue is just like that – a sudden brain-crash. Nothing works. I have been jolted ‘awake’ from such moments when I have realised that I have just spent a period of time (seconds? minutes?) where I have been thinking zilch, nada, nothing at all – a completely empty thought process. I just didn’t seem to have the energy to think. While that’s quite a scary thing to realise, it’s even scarier to feel your mind sliding back into that position again only seconds later. It’s like my brain has been determined to shut itself down, but without the luxury of a ctrl-alt-del.

Of course, that’s the mental side of it. Physically, it’s like being in a four-legged race with both legs strapped to sumo wrestlers.

Right – now I’m off on my holidays. Going to do battle with hot weather.

How deep is remission?

Someone once said to me “MS is a companion, but not a friend.”

These words ring true. I have been in remission for a while now, but I still haven’t shaken most of the symptoms. The dizziness and fatigue have been pushed into the background but they grumble along, just to let me know they are still lurking away.

The tingling fingers and leg pain are still there as well, but there will be a gap of five minutes or so every now and then when my hands feel “normal”, and the crushing and squeezing in my feet and calves won’t start until later in the evening.

The double-vision is ever-present and consistent though, so it is this that I use, just to pinch myself that this is really happening to me. Let’s just look left for a second, I tell myself… yes, two plant-pots instead of one.

Being told you have MS is so surreal that when symptoms are on a back burner and I feel good about myself, I feel the need for a reality check.

You may ask why. Why not just enjoy the moment? I think the answer is that if all my symptoms disappeared completely, I would forever be paranoid that there was a big attack just around the corner, waiting to take me by surprise. Checking that everything is still going wrong in it’s usual way, ensures that I get some constancy and I have something that I have the illusion of keeping in check.

Then of course, there are the times when I forget to take my tablets for a few days and it feels like I’m holding a cactus anyway.

This weekend was a mad one: jobs to do, daughters to amuse etc. On top of all this the weather was warm and muggy and I came down with a head cold which screwed me up for long stretches of the day. There were a couple of times when I simply couldn’t stand up. And as I type this, I am battling with drooping eyelids and a brain determined to shut itself down.

I guess there is no easy way to guage where remission begins and relapse ends as everything is there still – making it’s presence felt. The terrorist cell that operates in my central nervous system is currently doing a woollens wash, with their balaclavas probably just starting the spin cycle.

The next move they make could be tomorrow or it could be in twenty years time.

Whenever it happens, I like to think that I will be ready psychologically.

My MS History – Part Three

I was now on the books of a consultant neurologist.

With my stomach tying itself in knots, I re-capped my symptoms with one of his grim-faced registrars. I spent 45 minutes undergoing the usual tests. I did my trick of not being able to walk heel to toe. I watched a pen travel in front of my face from left to right and back again. I had the soles of my feet tickled, and the tops pricked with a pin. My reflexes were tapped with a hammer. I had to read an eye chart, walk a distance in a straight line, remember a phrase, say what day of the week it was, resist having my arms lifted and pushed against… all sorts of tests to ascertain what was wrong with me and how serious it was.

Only when I returned to her office, did I voice my fears.

I was fixed with a stern look: “It’s not a brain tumour. Don’t worry.”

Instant relief… Phew!

Apparently there were a number of reflections on the CT scan which might, just might, possibly be inflammation caused by MS… Maybe… and if it was MS, which it might not be, to remember that a lot of people with MS lead long fulfilling blah.. blah.. blah..

MS!

Is that all!

I can deal with MS!

Hang on though, who do I know with MS?…

“Ermm… my old neighbour had MS, and she was a bit crazy, like talking to a little girl. No short term memory at all. Kept repeating herself…”

“blah blah… advances in treatment… every case is different… blah blah…”

It’s not a tumour then – I can deal with MS.

The upshot of the meeting was that further tests needed to be done before anything could be confirmed, starting with an MRI scan.

A couple of weeks later, I found myself in the MRI suite of the hospital, with all metallic objects removed and a new pair of cheap trakkie bottoms on (with the metal eyelets cut out of them) that I haven’t worn since. A number of pieces of paper were blu-tacked to the wall warning local ex-steel workers of the damage that might be done to them with a large electro-magnet and the accumulation of metallic dust in their systems.

The very amiable MRI bloke asked me if I wanted some music while being scanned: “Rolling Stones or Beach Boys?”

“Er, Beach Boys please.”

So there I was awaiting polarisation with headphones some padding and a metal cage wrapping my head so close it made contact with my nose.

“OK – this first scan will take two minutes, don’t worry about the noise, if you are uncomfortable or anxious at all press the buzzer”

Noise?

>>Poc Poc Poc… ZZZUM! ZZZUM! ZZZUM! ZZZUM! ZZZHING! ZZZHING! ZZZHING! ZZZHING! VAMM! VAMM! VAMM! VAMM! …good vibrations… she’s giving me excitations… GRRANG! GRRANG! GRRANG! ZZING! ZZING! ZZING! CLUNNG! CLUNNG! CLUNNG! CLUNNG!<<

Lying perfectly still, afraid to swallow in case it mucked up the scans, I spent an hour in a noisy white tube, a little claustrophobic, but OK because I could press a buzzer and I could occasionally exchange banter with the radiologist. All this, while the intricate inner workings of my head revealed themselves on a computer screen just beyond the window of the adjacent room.

My MS History – Part Two

It was a brain tumour – it had to be. How else could it be explained? The GP said no heavy lifting, so maybe there was an outside chance of it being an enlarged blood vessel, ready to haemorrhage at any second.

Everyone has something they are frightened of. Something so unimaginably horrific they never want to confront the possibility of it ever happening. For me, it has always been the unlikely scenario of being trapped in an enclosed space deep underground, or the, equally unlikely until now, horror of an inoperable brain tumour, growing insidiously and without mercy deep within the white matter. I had lost my mother to cancer just two years previously, so I was well aware of how quickly it could escalate.

OK, so tumour or blood vessel…. something to think about as I lugged the heavy suitcases and baby paraphernalia into the car for our Cornish holiday. People were being positive, telling me it might be a trapped nerve, but how could it be a trapped nerve if it was affecting both my eyesight and my hands and feet? What if the vertigo (which had come and gone over the last few years) was something to do with it, as well?

I blew the dust off the Family Health Encyclopaedia… Hmmm… Brain… Disorders of the brain… Brain tumour…

Possible symptoms…
Headaches – I had a headache yesterday, so check!…
Doublevision – Check!…
Sensory impairment – Check!…
Balance problems – Check!…
Memory problems – yeah, I’ve been a bit forgetful lately, so check!

Let’s cut to the chase…

Life expectancy, six months!…

Shit!

I asked my wife to make sure that she took plenty of photographs of me and the kids over the coming week. She rightly replied with the advice to get a grip and until we knew what it was it could be anything.

As an eternal optimist, I wasn’t completely convinced that this was my last ever holiday with my family, but the possibility did weigh heavily on my mind. Despite this, it didn’t ruin the week. Not completely, anyway.

Every morning I checked to see if the doublevision was still there and it was. I pressed my fingers together to see if they felt pins-and-needly still and they did. I watched my calf muscles roll around and twitch under their own steam, and in the early hours of the morning, I noticed every twitch and felt every bump, mole and pimple on my scalp wondering if they signified anything. But the fact I had other stuff to think about and plan for and had places to go took precedent and occupied my mind somewhat.

There was nothing I wanted more than to be able to ignore everything and for it all to go away.

When I came home and found a letter from the hospital, booking me in for a CT Scan the previous week, everything came crashing back. A sleepless night followed and continuing the line of reasoning that I needed to keep busy to stave everything off – I headed to work…

A colleague asked if I’d had a good holiday.

I burst into tears.

On the end of the phone, the hospital asked if I could come in for the scan that very morning. When the NHS moves fast, you know it’s serious. I made the 20 mile trip from work, getting changed and picking up my wife on the way.

Up in the CT Scanner (“Like sticking your head in a washing machine”) I screwed up my eyes, trying not to think about the rays entering my skull and unlocking the horrors within. I also wanted to avoid the picture of cherry blossom on the ceiling of the scan room, strategically placed to calm the nerves.

Afterwards, I phoned my regular GP and he took the time to reassure me that it could indeed be anything, not just the worst-case scenario, and I could have something to help me sleep if I needed it.

I was now on the books of a consultant neurologist.

With my stomach tying itself in knots, I re-capped my symptoms with one of his grim-faced registrars. I spent 45 minutes undergoing the usual tests. I did my trick of not being able to walk heel to toe. I watched a pen travel in front of my face from left to right and back again. I had the soles of my feet tickled, and the tops pricked with a pin. My reflexes were tapped with a hammer. I had to read an eye chart, walk a distance in a straight line, remember a phrase, say what day of the week it was, resist having my arms lifted and pushed against… all sorts of tests to ascertain what was wrong with me and how serious it was.

Only when I returned to her office, did I voice my fears.

I was fixed with a stern look: “It’s not a brain tumour. Don’t worry.”

Instant relief… Phew!

Apparently there were a number of reflections on the CT scan which might, just might, possibly be inflammation caused by MS… Maybe… and if it was MS, which it might not be, to remember that a lot of people with MS lead long fulfilling blah.. blah.. blah..

MS!

Is that all!

I can deal with MS!

Hang on though, who do I know with MS?…

“Ermm… my old neighbour had MS, and she was a bit crazy, like talking to a little girl. No short term memory at all. Kept repeating herself…”

“blah blah… advances in treatment… every case is different… blah blah…”

It’s not a tumour then – I can deal with MS.

The upshot of the meeting was that further tests needed to be done before anything could be confirmed, starting with an MRI scan.

A couple of weeks later, I found myself in the MRI suite of the hospital, with all metallic objects removed and a new pair of cheap trakkie bottoms on (with the metal eyelets cut out of them) that I haven’t worn since. A number of pieces of paper were blu-tacked to the wall warning local ex-steel workers of the damage that might be done to them with a large electro-magnet and the accumulation of metallic dust in their systems.

The very amiable MRI bloke asked me if I wanted some music while being scanned: “Rolling Stones or Beach Boys?”

“Er, Beach Boys please.”

So there I was awaiting polarisation with headphones some padding and a metal cage wrapping my head so close it made contact with my nose.

“OK – this first scan will take two minutes, don’t worry about the noise, if you are uncomfortable or anxious at all press the buzzer”

Noise?

>>Poc Poc Poc… ZZZUM! ZZZUM! ZZZUM! ZZZUM! ZZZHING! ZZZHING! ZZZHING! ZZZHING! VAMM! VAMM! VAMM! VAMM! …good vibrations… she’s giving me excitations… GRRANG! GRRANG! GRRANG! ZZING! ZZING! ZZING! CLUNNG! CLUNNG! CLUNNG! CLUNNG!<<

Lying perfectly still, afraid to swallow in case it mucked up the scans, I spent an hour in a noisy white tube, a little claustrophobic, but OK because I could press a buzzer and I could occasionally exchange banter with the radiologist. All this, while the intricate inner workings of my head revealed themselves on a computer screen just beyond the window of the adjacent room.

My MS History – Part One

Once somebody tells you, you have MS, you start to put a jigsaw together. You wonder whether that strange tingling sensation you had in your right arm last year had something to do with it, or in my case the vertigo diagnosis from the previous year and the little numb patch between my big toe on my right foot and the others.

It all happened at roughly the same time, but seemingly by stealth as I can’t put an exact time or even a date on it. My old office at work used to look out onto the rolling Derbyshire scenery. In the distance there was a radio mast on top of one of the hills. I remember looking up at that radio mast and hilltop one morning to see two radio masts and hilltops, but weirdly, only when I looked left. Also, when I hammered away at my computer keyboard, I noticed that my fingers felt a bit tingly. ‘RSI?’ I wondered.

I had recently had delivery of a new computer and I had shifted my workspace around and moved my desk from one side of the office to the other. When this sort of thing happens, my employer automatically sends a health and safety person round to assess how you are sitting, whether the new screen you have is causing any eye problems (“Yeah, well I do have this problem with doublevision”), or whether your seat is suitable (“Funny you should say that, but I get this strange electrical tingling sensation down my back and into my thighs when I put my chin to my chest”). The doublevision I put down to eye strain as I had other unexplained problems with my eyes a few years before (this particular jigsaw piece hadn’t dropped into it’s slot at this point).

The health and safety guy, barely into his twenties, was non-plussed. “Maybe ask your GP,” was his suggestion.

“Yeah… maybe I will”

I recounted my recent problems to my brother shortly afterwards at the football. “If you were a TV, I’d take you back to the shop” was his comment. I could see his logic, and I needed to see my GP about something minor anyway – I needed a wart removing from my lip – I could always mention this weird stuff at the end as an aside.

I saw a locum GP. It turned out that the wart was the least of his concerns. He did various tests. I had my reflexes tested, I watched his finger move left to right, I stood on one leg, I touched my nose then his moving finger then my nose and so on. He booked me in for an emergency CT scan at the hospital in the city. I should get an appointment within the fortnight, he said.

He thought everything I was experiencing was connected somehow, but wouldn’t be drawn on what it might be apart from that it could be something pressing on my spinal cord.

“Basically, where my expertise ends, someone else’s begins…” were his words, “take it easy… don’t do anything strenuous… no heavy lifting… look after yourself… be selfish… let others take the strain for a while.”

A GP has never said anything like this to me before. My previous visits had always been met with a “don’t worry about it, it’ll go away” air about them.

I thought of the heavy suitcase that I had to load and lift into the car, ready for our family holiday in a couple of day’s time. “I’m going on holiday at the weekend.” I explained.

“Where are you going?”

“Cornwall.”

“That’s good. They have hospitals down there.”

“You’ve got me worried now,” I laughed . . . no flicker of a smile on his face.

As I left the surgery, I felt the weirdest sensation. Something other-worldly, like I had been given a serious secret assignment.

I had a door with what could be a monster lurking behind it. All I had to do was find the key.