Getting fit with Mr Uhthoff

This isn’t a new year’s resolution, but I have decided to get fit.

This incorporates a couple of in-built problems, the most obvious being the MS, of course, but the second being the fact that I don’t do personal trainers (I have to admit to being quite rude to the only one I have ever had) and I don’t do gyms.

Therefore I have been taking to the roads for the occasional run in the hours of darkness.

Regular readers will know that I had a spate of evening runs last year up on the nearby moors, but this time it’s serious.

Why? Because it’s winter and I can push myself a bit further each time without overheating and I’m slightly less ill than I was last year, so the repercussions of Uhthoff’s phenomenon aren’t as great. Also, because it’s dark I can run incognito (it takes a while before I get over my self-consciousness).

I have been out three times in just over a week and I have lost two pounds in weight. I want to lose about a stone overall. Plus, as you can see in my post “Giving in” I need to build up my stamina.

I am trying to build up to five mile runs with a few hills thrown in, so far I have progressed as far as a two and a half miler on the flat with a sprint for the last 100 metres or so.

I am comparing this year’s training to the last time I did some serious regular running three years ago. The 2007 fitness regime took place a year and a bit before I was officially diagnosed, so I have only realised in retrospect that the experiences I had then were due to MS.

Back in 2007 I experienced a numb leg and a rubbery burning smell afterwards which I whimsically attributed to having burnt-out some electrics in my head as I was running (not realising how close to the mark I was). I would also get oscillopsia on my longer runs.

The last fitness regime tailed off when my youngest was born. So far, as far as Uhthoff is concerned, I have been a little wobbly legged after each run, but this has diminished each time I have been out. I have also had ‘slow eyes’ for a while after I finish (so I am expecting some oscillopsia when the longer runs kick in). I still have the peculiar burning smell too.

I have been doing some reading up and now know the burning smell is phantosmia – an olfactory hallucination – and is quite common for people with epilepsy as part of the pre-fit aura or with people who have brain injuries in the part of the brain that interprets smell. I guess I must have demyelination here.

My ideal, is that one day (this year or next) I may (NB: may) do a 10k run in aid of one of the UK MS charities.

My current thinking is that I will be supporting the MS Trust for the support they showed me in terms of the excellent free information they sent to me when I was diagnosed.

With this in mind, I have been consulting the MS Trust’s superb online training information. It is well worth checking out even if you don’t have MS as they include clearly written information and training schedules for beginners as well as more experienced runners.

I’ll keep you posted on how I get on.

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Giving in

View of East Moor, Derbyshire - 8 January 2003

Yesterday I gave in.

I rang work to say that I couldn’t make it to the bus stop (one mile away up an icy hill) because of the weather.

In January 2003, I put my books to one side (I was doing a masters degree at the time), donned my walking boots and headed out of the front door to go for a twenty mile circular walk across the snowy moors.

I was pondering my future at the time, so I was in limbo as far as starting a family, or gaining proper post-graduate employment was concerned. My most immediate worries were house-hunting, coursework and finalising a dissertation topic.

My feet had instintively led me along a route I had planned on the map and imagined in my head numerous times as I had lain in bed at night.

I spent a happy day winding through local farms, along lanes that linked nowhere with nowhere, through copses, across the moors, past prehistoric barrows and back via a middle-of-nowhere pub.

I remember one particularly cool moment dangling my feet over a gritstone edge, watching the sun breaking on distant snow (see picture) while exchanging texts with a friend in her central London office.

I made it back as dusk was setting in, the fiery sun anchored to the horizon, mirroring my rosy-cheeks, satisfied and happy with the exercise-induced endorphins doing their thing.

I felt rather wistful watching the thaw setting in, dripping the branches and slushing the roads.

“That’ll be the last time I ever do that,” I muttered, quietly resolving to prove myself wrong.

Since then, a few milestones have been passed: I (post-)graduated, got married, found a job, bought a house, had two kids, lost my mother, extended my house, found a better job…

…got diagnosed with MS.

All this time, I have held onto the thought that one day, one distant crisp white snow day, I would do it all again. I would brush off my walking boots, wonder at the previous walk that had caked the mud into the soles, layer up, pull on the pack full of the day’s essentials (map, sandwiches, hip flask), and set off again across my beloved Derbyshire countryside.

Yesterday I couldn’t even get out of town.

Halfway up the local hill, the snow and ice got the better of me. Oscillopsia set in and my legs felt like lead.

Phoning into work felt like I had given up, like I had lost a key battle. For the rest of the day my legs and feet nagged at me in the cruellest way possible by feeling like they actually had walked twenty miles, but without the endorphins to show for it.

Still, I’m the optimistic type.

Part of me knows there are other factors involved – I had worn myself out after abandoning my car to the snow the day before. I had also walked, with a sledge in tow, the four and a bit miles – there and back – to pick up my kids (actually, I cheated and we caught a bus some of the way back).

I may have lost this battle, and I know that ultimately I will lose the war (how heavily or lightly remains to be seen), but there are other battles.

I am resolving again that when the kids are a bit older and I have the spare time, I’ll be taken with the urge and I will head out again across those hills.

I’m planning it now.

“Sorry, there’s nothing we can do”

There is a stand up routine by Sean Lock where he recounts being told off for swearing by belligerent airport staff. His exasperated reply finishes with “This is exactly the sort of occasion swearing was f***ing invented for!”

Excuse me a moment…

a$%e!…  &u$%&!!…  (%d%*!!! %^&*!!…   f&*^:~!!…  ~*()&*&^$%$”!!!!!!

There – out of my system…

No, wait, hang on…

%&^*£$^%$!!

There. Feel a bit better, now.

I went to see an orthoptist about my doublevision, nystagmus, intranuclear opthalmoplegia and oscillopsia the other day.

I spent about an hour undergoing various tests. I followed a torch with my eyes. I had various lenses passed in front of each of my eyes and I had to say when the image became double and single. I pointed at dots with a long stick (and missed). I looked at various patterns to find the hidden 3D shape and of course I read the all too familiar eye chart.

Things I didn’t know before: I also have doublevision looking up to the right and my left eye doesn’t pull in towards the nose as much as it should do.

I have been looking forward to my doublevision being ‘sorted’ for a year and a half. As I mentioned in my last post, this is the one constant symptom, the one that doesn’t fade away and then come crashing back. The symptom that is constantly breathing down my shoulder reminding me I have MS and it is the symptom that spurred me on into visiting the GP in the first place.

It is also (as I screw up one eye to look at you) a symptom that makes me feel dizzy, tires me out, drags me down and makes me look like a weirdo. I was convinced that the magical people in the eye department of my local hospital would be able to build me prism lensed spectacles to straighten things out for me. Not to wear all the time, you understand, just when I’m at work, or in a meeting, or driving my car, or walking along the street. I’m not asking for much really. Just some semblance of normality.

“Sorry, there’s nothing we can do…”

Apparently, they can’t (or won’t) correct doublevision unless it occurs in the primary position (straight ahead). Also, my eyesight is pretty good – I can read most of the bottom line on the eye chart and if I did have glasses, they would have to be plain glass and the prism lens would blur things a bit for me.

So there I was watching the orthoptist as he moved his head left and right to demonstrate how you look left and right.

Yes, I should be grateful for the fact that I can see, and yes, I should be grateful for the fact that I can see pretty well and yes, it could be a whole lot worse – a hell of a lot worse. I could have been maimed in an accident, I know. But days like this remind me that MS is a complete an utter uncurable bastard. Things will never be the same. I will never be able to look around with my eyes travelling the same speed again. I will never be able to look left and see a single image. I will never be able to look right and keep my eyes perfectly still. I will never be able to read a book without it tiring me out. Things will never be how they used to be.

So when someone tells you there is nothing they can do, that little ember of hope at the back of the hearth that you thought might be coaxed back to life with some newspaper and a bit of careful blowing, is snuffed out with a gallon of water.

And what makes it all so much worse is that I will probably look back on this day and think how lucky I was back then compared to how I am ‘now’.

Doublevision is one of those symptoms that can come and go in Relapsing Remitting MS, but I’m pretty sure that after a year and a half we’re not just talking about demyelination on the nerve controlling eye movement. I think there’s been some permanent damage.

I have an appointment with an opthalmologist in a couple of weeks and they want to look at the back of my eyes and document the “state of things” I guess. They will probably also want to patronise me by telling me stuff I already know about nerve damage and so on.

So, having taken the knock and bottling up all the crestfallen feelings I’m back to the bustle of the hospital lobby. Past the people in Costa coffee. Skirting the guy with the mop and the couple with the walking frames. Through the automatic doors, past the A & E entrance, then the maternity wing with a handful of expectant mothers in dressing gowns, fags in hands.

Back to the car…

Negotiating the one-way system through the car parks…

Waiting for the ambulance to go past…

out onto the main road…

Whack the stereo on full blast to take my mind off things as I head back to town…

The music starts: “There’s no escaping from / the man it seems that I’ve become…” *

…The grief.

* test your music trivia – identify the track and you may or (more likely) may not win a prize (not decided yet, but nothing big and nothing amazing).

One year on …

Today is the first anniversary of my diagnosis (see MS History – part two).

Health professional bodycount so far.

Starting with the first GP visit last year, the bodycount is as follows

• GPs 4
• Practice Nurses 2
• MS nurse 1
• Ward nurse 1
• Occupational Health nurse 1
• Phlebotomists 6 (estimate)
• Physiotherapists 1
• Neurologists 5
• Neuro-psychologists 2
• Radiologists 4

If you consider the medication as well, I have probably cost the NHS more money over the last year than some of it’s employees.

Symptom recap:

Current symptoms:

• mild optic neuritis (since Jan ’09)
• doublevision / nystagmus / intra-nuclear opthalmoplegia / oscillopsia
• fatigue
• tingling / pins and needles
• neuropathic pain in legs

Symtoms that have cleared up for now:

• L’Hermitte’s sign
• vertigo
• muscle weakness
• involuntary muscle movement

Of the current symptoms, the fatigue and optic neuritis aren’t quite as acute as they were at first onset, so I feel much better, relatively, than I did last year. I think it is important to stress that I still have bad days, though (I nearly fell asleep in a meeting yesterday). Things are also helped by friendlier medication.

a little bit further along that long road to fitness

Managed two miles tonight in my secret moorland training camp. Yay! target reached.

Contended with failing light, with mist/drizzle (mizzle?) and a sharp headwind on the flat and downhill sections, but luckily behind me for the uphill. Oh! and an undone shoelace for much of the second mile

I think the “bad” weather helped. I have never been a hot weather type, but the drizzle was ice cold and kept me cool all the way round, so none of the usual crap apart from a few jumpy visuals after – also right eye wouldn’t look right for a while. I only had shorts and a T-shirt – no poncey jogging bottoms for me – no way!

Been a fairly busy day all round. Feeling good now – buzzing. Won’t be able to sleep easily. Shame because it’s one in the morning already.

Hopefully three miles next time.

The long road to fitness

I went for a run this evening out on the moors. There’s a triangle of road that is exactly a mile round so it’s easy to assess how (un)fit I am.

I hit the MS wall at one mile. Uhthoff not far behind – my eyes starting to play tricks. I just couldn’t lift my feet at all.

Next time I go out, I will aim for two miles.

Two years ago, I was going out for two five mile runs every week, involving hill climbs, the lot. I also wondered why I couldn’t see properly as I was running or why my leg was going numb in the shower afterwards.

I feel surprisingly un-fatigued now and it’s quite late. Just sitting in my tingly cloud. Must try to go out again before my personal trainer comes on Thursday.

Life with MS – Part One – Symptoms

I don’t want to come over all “woe is me” because there are plenty of people out there on the internet trying to out-do each other with their bad symptoms and there are many others with MS who have it much worse than I do (my old neighbour who also has MS, doesn’t recognise me now when I see her).

I thought for the purposes of this blog that it might be useful to document some of the symptoms I have experienced both now and in the past to give readers some idea of what it is like to have MS. Please note: this list does not include the marvellous array of drug side-effects. More on those later.

Symptoms happening now:

Doublevision (since March 2008)
when I look left I see two of everything side by side. Simple as that. The more I look left, the bigger the displacement between images. Makes crossing the road and recognising people in the street difficult. Constantly closing one eye takes it’s toll too, in terms of fatigue and people thinking you are crazy.

Nystagmus (since summer 2008)
When I look right, I get nystagmus. My eyes flicker and won’t keep still. It gets worse if I’m tired or have done some exercise and I can sometimes get jumpy eyes looking straight ahead. It makes reading and watching telly very tiring and I don’t read as much these days.

Intranuclear Opthalmoplegia (since March 2008)
Looking left to right or right to left my eyes travel at slightly different speeds so it takes time for the two images to match up when looking right. Things can look a bit trippy when glancing round all over the place.

Oscillopsia (since 2007 or earlier)
my vision jumps around all over the place if I am running or walking strenuously – a bit like running with a video camera.

Pins and needles (intermittent until March 2008 and constant since then)
I get tingling sensations in my fingertips constantly. Sometimes it subsides to a faint tingle. Once or twice I have had a window of half an hour or so when they have disappeared completely (the drugs working). Mostly I get the electric tingling sensation in my fingers only, but it can spread to my hands and even my forearms. I also get these sensations in my feet, particularly my right foot. My right leg feels fuzzy for most of the time and walking can be troublesome on a bad day. I have numb patches on my right foot. This all gets worse if hot or tired. Also according to a 2004 diary entry – I had a week where half my head had pins and needles.

Bladder problems (not sure since when)
I sometimes find it hard to go. I don’t always fully empty my bladder – I simply can’t – and I can need to go to the loo several times during the night giving me a disturbed night’s sleep.

Cognitive Problems (not sure since when)
I have difficulty with concentration and short term memory – a particular problem with routine tasks, such as making payments to the child-minder, credit cards etc. My mind can wander in the middle of conversations as well and I lose the thread of…. erm… …anyway I have an old pre-diagnosis diary entry where I thought my memory and concentration had improved since taking Omega 3 tablets, but I was probably documenting a remission period.

Pain (not sure since when)
Apart from the pins and needles, I get sharp shooting pains from my finger tips occasionally. The worst pain I get is a weird cramping sensation in my legs which feels like insects (ants in my imagination) moving around under the skin. This is unbelievably uncomfortable and when it happens I can’t keep still and I can’t relax. This happens almost daily and can start as early as mid-day.

Fatigue (since March 2008, but also during hot days in 2007)
Like someone has taken my battery out. I had this at work once and found my mind blank as if I was sleeping with my eyes open. It happens intermittently and when it does I might as well be made of concrete. I will just want to sleeeep.

Other symptoms:

Stiffness / Muscle spasm (Spring 2008)
I had a problem with this in the spring of 2008. I was an old man for three days – stiff as a board. I found it very difficult to move. It coincided with having hives – I think I had an allergy to some washing powder which brought this on. I also had involuntary movement of my calf muscles in March 2008 – in a relaxed state they were moving and twitching all over the place.

Optic neuritis (March/April 2004)
Flickering lights in my vision. Some pain in my eyes when looking round. Flashes of milky white light in my vision when looking round in the dark.

Headaches (July 2004)
I reported in my diary of the time that I had a headache that had lasted for four weeks. Of course, I could have had any number of MS induced headaches, but when one lasts for four weeks, it’s a dead cert.

L’hermitte’s sign (March 2008 to Autumn 2008)
Placing my chin on my chest created an electric shock sensation travelling down my back and into my thighs, or, on a good day, like someone pulling a tickly, twiggy branch up my back. I think drug therapy may have cleared this one up for now.

Vertigo (2004 to 2008)
An intermittent symptom – it comes and goes. I felt a mild wave of giddiness the other day when I was bending down for something, but at it’s worst vertigo can make the whole world spin and induce a feeling of seasickness. Even turning over in bed can make me lose my balance completely and I have to sit up to regain my bearings. In 2004 and 2007, this was one of the major symptoms I had to deal with and I spent a night of hell intermittently spinning and vomiting in 2007. I also used to walk into the walls along the long corridors at work. It’s very unpleasant – I would rather have doublevision over this any day.

Ultra-sensitivity (pre-2007 to 2008)
I have patches of skin that can be ultra-sensitive and uncomfortably ticklish.

So there you go. Quite a wide range of stuff, sensory and visual mainly.

I guess since diagnosis I am more aware of everything that is going on, so I may have missed out a whole heap of weirdness that has come and gone over the last few years. Now I am on beta interferon, the length of time between relapses should lengthen, but I should be able to recognise when one starts when new symptoms start appearing or old ones start re-appearing and I will document it here.