Sticking at it

I plucked up the courage to go down to my allotment the other day.

The first proper visit of the year is always a bit daunting. I can see the allotment as it’s just behind where I live, so I know that my plot has spent a number of days recently under a foot or so of water. It’s also on very heavy clay-based soil so I know from experience that it’s going to be very hard work digging it all over.

There’s also that hurdle of making passing conversation with the stuck-in-their-ways, Daily-Mail-reading, brexit-voting old men down there, most of whom are at least 20 years my senior (and I’m in my late 40s).

But I was in the mood for some fresh air and I thought I’d better check things over.

The first conversation went something like this, with someone I’ll call ‘Dick’ as he was leaving.

“Ay up Dave, You alright?”

“Not bad Dick, you OK?”

“Aye, not bad. You look a lot better than you did the other day though.”

“Why’s that then?”

“You were just leaving the GP surgery. You looked awful – you were walking with a stick!”

I’d been to pick up a repeat prescription for my restless legs (Rotigotine – been working wonders), and yes – I had walked there and back with a stick, so I guess I must have looked truly terrible… like Frankenstein’s monster or a daylight Nosferatu, no doubt.

Dick’s rather insensitive comment ranks alongside a former manager’s ‘little buggy’ comment and places them firmly on a hit list of people to target on the day I finally crack.

At least he doesn’t know I also piss through a straw, I guess.

I’ve been walking with a stick for a few weeks now, mainly at night after the rest of the family are in bed, just to help get my step-count up and I’ve only been using it for distances of about half a mile or more. The truth is, I need to exercise and I find it impossible to run these days, to the extent that I genuinely worry about traffic and the amount of time I have to cross a road.

I stay seated for a good deal of the day because I work in an office. Also, it’s hard to maintain an active lifestyle when your legs let you down after a couple of miles, so walking with a stick has become a necessity.

And I’m glad of it. Just this last week (apart from one bad day) I hit an average of 10,000 steps a day and the stick has certainly helped me get there.

I see it as the equivalent of holding onto the handrail while walking along the deck of a moving ship. It just provides that little bit of extra balance and reassurance and, perhaps more importantly, tells me I have no excuse not to go out for a walk round the block.

It also sends out a message: ‘I’m not quite as mobile as you, so please make allowances.’

It also says: ‘I’m disabled, so I’m unlikely to be an attacker or an assassin, but if you fancy your chances, I can wield this sturdy weapon, ninja-like to defend myself.’

So it’s very much a psychological support as well as a physical one.

I’ve also been seeing a neurophysiotherapist again (more of that later) and she thinks I’m doing the right thing by setting and hitting step-targets and recognises the stick as an essential tool to achieve them. I’m quite a brisk walker (for the first mile and a half, anyway) so it’s nice to get some fresh air and exercise every day before I hit the sack.

Of course, the combination of fresh air and exercise late in the evening also ensures that I’m pretty much comatose by the time my head hits the pillow – an added bonus for someone who has struggled with insomnia for a lot of their adult life.

So I checked out my allotment plot, retrieved my plastic chairs that had blown off in a winter gale, swept out my greenhouse, emptied some scraps into the compost and checked that my shed hadn’t been flooded (it hadn’t). And all of a sudden, things looked rosier and more managable. Yes, I’ll have to dig it all over, but I’ll take a day off with a flask of hot coffee and my headphones in and I’ll make a start.

I also had a good long chat with the bloke on the next plot to mine who I’m friendly with. He’d fixed my strimmer for me over winter, and I just felt generally more positive by the end of it. He told me that Dick – the gossip – had mentioned the stick, so I explained the situation and he seemed to understand.

I no longer care about how I look, but one reason I had rolled out the stick’s use after dark was that I was a bit self-conscious to start with, like I might be if I’d started wearing glasses perhaps. With the stick helping me build up some stamina and the physio working on my balance and core-strength, my main thoughts for this season are now about what I’m going to grow, rather than what I can manage to do.

Blitzkrieg post-script

Well, everything was a bit miserable at the end of my last post so apologies for that.

I’m a week or two further along the line now and I’ve been applying the patches to their designated places in the literature and experimenting with each zone.

I’ve found that the only place that works is my upper arms. I just have to find out how I can rotate the patches so I’m not sticking them in the same place every 14 days (space is limited), as all the literature says “do not stick the patch in the same place in a 14 day period,” without explaining why – will my arm fall off?

Anyway, it’s 7 days of patches just above the left elbow, followed by 7 days above the right. After that it’ll be 7 days just below each shoulder (on the non-hairy bits).

Sleep is blissful again, but I’ve found that I’m very weak in the legs when I wake up, and fairly weak during the day so I’m thinking about referring myself to the physio again.

Let’s get physio.

Here’s a video showing a typical minute in the life of my calf muscles.

Yesterday I added to my Panini sticker book of health professionals by seeing a neurophysiotherapist for the first time. It was mainly about leg pain and my twitchy calves, but also about my general clumsiness, fatigue and my general state of affairs.

My fasciculating legs are a remnant, along with my doublevision, of my last BIG relapse in 2008. While other symptoms have fallen by the wayside or make occasional quick unannounced visits like an unwelcome relative (I’m talking about you, vertigo), my painful legs have been a problem for the last decade. I’m not saying the twitches are painful in themselves, but there’s a correlation: the more painful my legs are, the twitchier they’ll be.

I reckon seeing a physio is one of the best healthcare experiences you can have, as it’s pretty hands-on. It’s just nice to hold someone’s hand, even if they are jerking your arm around. I had my balance, my range of movement, my reflexes, and what sensations I was (or wasn’t) feeling assessed. Most importantly, I got to talk everything out, relaying everything I’ve been through from day one, to someone who genuinely listened.

It also helped me get my head round things. I’ve been using the word ‘pain’ as a box ticking exercise; it’s a convenient way to describe an unpleasant sensation, but it’s not pain in a conventional sense. If it was the pain of a headache, burn, tooth or even a bad back, I could rationalise it, no matter how intolerable – my pain threshold is pretty high (ask my dentist).

This is the pain of extreme discomfort; the pain of an itch you can’t scratch or the ache of an amputee’s phantom limb. At its worst, it’s torture.

I was asked to describe the way my legs feel, and after thinking for a while, I said they feel charged; they have an electricity about them. I’m pretty sure if I listened carefully enough I’d hear the crackle of static or the hum of an overhead power-line. If they wake me up in the night, the charge builds up over a period of about 20 or 30 seconds before discharging in a spasm. Only one leg at a time will be a problem. If I gently touch the sole of my foot or my calf muscle when they’re at their most sensitive, they’ll recoil in a hyper-reflexive instant.

Again, I thank my lucky stars for MS nurses because it’s only this year when I mentioned my legs in one of my nurse appointments that anyone has taken them seriously. Even my neurologist has dismissed them in the past as a twitch that everyone gets (really?) just like a twitching eyelid.

At least now I can take baclofen a couple of hours before I go to sleep and combine these with stretches and exercises to ease my way into the land of nod. I also have a series of follow up appointments with the physio to look forward to.

Post script:

After writing the above, a mildly arthritic big toe joint has decided to flare up. This is causing me no end of agony from the attached leg alone. When I saw the physio, it was after a fairly comfortable morning of working from home, so typically, I couldn’t demonstrate the worst case scenario. Today’s a different matter, it’s like my whole leg from the knee down is on fire. My reflexes are kicking in every time my foot touches something, making it pretty hard to walk. I’ve taken my baclofen early, and I’m taking ordinary painkillers for the toe, so fingers crossed I’ll get some sleep, but I’m not holding out too much hope.