“It’s a miracle!”

I don’t want to tempt fate and I don’t want to count chickens before they’ve hatched or any of that but…

…It seems I can walk again.

Now, this doesn’t mean I’ve been to see some Jim Jones style preacher, and it also doesn’t mean I’ve quaffed some magical elixir derived from a temple in a South American rainforest either.

What I mean is, I can now walk a bit further than I could.

I often go out for a walk before breakfast on weekdays (weekends are for ‘lie-ins’ *). Until last week, I’d tell anyone who asked, that I wasn’t able to walk more than a mile or so before my legs would turn into some sort of high-density jelly; my feet dragging on the ground; getting tangled with my walking stick etc.

Over the last week, I’ve been able to walk (fanfare)… three miles!

Not quite as exciting as an Indiana Jones adventure, but massively exciting for me. I live on the edge of town, so I can now access some countryside, and I’m also achieving my rather modest daily step target of 6,000 steps by 8am.

I’m currently leaving the house at six, wrapped up warm as the sky becomes lighter. I’ll find a footpath across some fields behind my daughters’ secondary school and head off on some farm tracks, the early morning air filled with the sound of woodpigeons and blackbirds, and the gentle rumble of traffic in a town waking up just a few fields away.

It takes me an hour and a half to do three miles, which isn’t that fast compared to the way I used to be, but I’ve been following my physio’s advice by planning a route that takes in as many rest stops as I can find. These rest stops include benches, low walls and grassy hummocks to plonk myself down on, and fence posts to lean against.

I’ll get back home, just as the local dog-walkers are emerging from their front doors. I’ll make a nice pot of tea and pop a couple of slices of toast on while the rest of the house is waking up.

Crucially, I have enough strength and energy to stand and walk within the safe confines of my kitchen whereas before I’d still be lying in a quivering heap on the floor of my porch, struggling to prise the shoes off my feet.

I’m not one hundred per cent certain where this sudden capability has come from. I’ve been worried about my mobility getting worse, and I suspected Secondary Progressive MS might be on the cards, but I had a full brain and spinal MRI the other week and I haven’t heard back from my neurologist yet.

I’ve decided this must be a good sign.

I’m hoping this is just the remission after a relapse. One of those stealth relapses you don’t notice have happened until it’s too late. There will also be an element of my neuro-physio’s advice echoing round my head as I walk.

I’ve always been into walking as my favourite physical activity. Even when I lived in the East End of London I used to knock up a good eight miles some days, while working for Hackney Council, striding between offices and along the canal towpath that used to skirt where I worked.

So I’m not mincing my words when I say that not being able to get out for a good walk has been really distressing over the last couple of years. I’m tentatively hoping I can reassemble the broken shards of this relapse – if that’s what it was – and build on what I can do now. I find I’m now spending slow moments in my working day, planning small extensions to my current route on Google Maps.

You don’t really appreciate what you’ve lost until you lose it, so while the rest of the country is getting their jabs and anticipating the end of the COVID lockdown (I’ve had mine, by the way), I’m struggling to feel anything about it. Instead, I have something precious and delicate; something that could be snapped away from me in an instant; something that seems to be showing some signs of life again, and that’s all I can focus on right now.

* weekends = 7am

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.

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.