95%

Once more, my apologies that the blog posts have been a bit intermittent thus far this year. Apologies also that this year’s posts, such as they are, have been little more than the ‘Guillain–Barré Diaries.’ This trend will continue for today’s entry and then I’ll try to give it (and you) a rest.

I feel these posts may be useful to me in years to come if the gods spare me. Who knows, they may also be of some minor use to someone who will walk, or shuffle, the same path as me.

As the title suggests, I would now rate myself as 95% recovered. Not everyone may necessarily agree with my assessment. It has been a (mostly) unrelenting wave of personal positivity that has at least helped to carry me this far this quickly. So why stop now? In the spirit of ‘Fake It Til You Make It,’ I am at 95% and there I shall stay, at least until I hit 96%.

So what does that mean, in actual terms? In my slightly biased view, it means I can now present a front to the world which is convincingly well. I can present myself so that a person meeting me might say, “I thought you were sick,” which is quite satisfying. I can walk pretty darn well, so long as I focus a little on it. I can climb stairs until the cows come home… a time when it is often necessary to climb stairs. I can walk to work and work all day and walk home again. I can tie my shoelaces and button my shirt in a manner that no longer draws sympathetic attention. In a recent examination, the reflexes which were markedly absent are mostly back and the huge tuning fork, which previously brought zero results from many corners of my frame, now vibrates joyfully through my bones. In a dodgy moment on a road the other day, I picked up speed to get out of the way of a car that was bearing down on me and a passer-by remarked, “you’re running now!” and I replied, “only when some fucker tries to run me down.”

So, yes, I’m back. 95% worth.

So, what of that other 5%? What does that constitute?

Mostly, it’s the darned tingles. That’s what they’re called, it seems, although I personally think it’s too small a word. Until I learned the word ‘tingle’ I referred it the sensations as ‘buzzing’ or ‘pins and needles,’ neither of which was quite right. ‘Tingle’ is good but it does need that capital letter out front, to add at least a bit of oomph to it. For it is no small thing. As I sit and type, and 24/7, my hands and feet tingle constantly. Finger tips are highly sensitive to touch, creating an electric shock effect every time I touch the keyboard. This has been a constant since the early onset of the syndrome and it currently (currently, get it?) shows little sign of easing. That is okay. I know it will abate over the coming months as the Myelin Sheath that ‘insulates’ my nerves slowly rebuilds itself. Until then, I have grown accustomed to the tingle and can work around it and with it pretty well. I’m typing away good-oh at the moment and the tingle is the tingle. I hear that it fades away, rather like a light being very slowly turned down, until it is one day gone. Or not. Some people of my age group may be left with a residual tingle. I’ll live with that if that’s how it pans out. I’ll consider myself lucky.

I believe that there are things you can consider taking, to ease the tingling. But my understanding is that it is better for me to get as much sensory input as possible, rather than dulling anything down. For some people, their own personal tingling might simply be too much to bear and drugs will be required. Again, lucky me, I can get by with my level of tingle and so I do.

Without diving too deep in this bit, feelings are at 95% too. 95% of the time I feel so lucky that I was in a position to recover as quickly and as well as I have. Others have needed much, much longer. And, let's be clear, my good fortune here has not been due to strength or wisdom or good looks on my part. It has been 95% luck, pure and simple. If I’d been worse, as other people often are, I would still be in my chair. So, if you ever end up there, it’s not a competition. Just keep doing everything you can to get better, for that was the other 5% that got me here, and that’s all that you can do.

As for the other 5%, feelings wise. Well, I sometimes think about how I was on the 14^th of January and how I am now. Now I am a man who can walk well, so long as I focus. I can work hard, so long as I know I will be very tired afterward. I can type, so long as the tingle remains my friend. Because sometimes, late in the evening, it is not my very best friend. It’s more like a slightly irritating schoolmate, who turns up late to the reunion, and only wants to talk about how terrible you were at sports.

95% of the time, though, I walk out in my town and I see Spring coming to the trees on the Mall and I know I wasn’t expecting to see that this year. I revel in my new-found strength, in walking and in general resolve, and I look forward to all the good things to come, now that I know I can handle a little bit of the bad.

That last part sounds a bit like a creed…

Normal service will now resume in these-here parts.

The cat is up to all sorts… you need to be told.

K  x

In Search of the Swagger

You might do something for me. It’s not terribly hard.

The next time you go for a walk, even if it’s just one of those short ones from A to B, stop for a second and congratulate yourself on how brilliant you are. I mean, look at you. Nothing less than balletic is what I would say. A masterclass in balance and forward momentum.

As for me, (thanks for asking), I am now walking pretty well and covering quite a bit of Castlebar territory every day. I walk to the library and practice going up and down their stairs. I also walk around the Mall, which is something I promised myself I would do again, after the hurly burly was done.

One kind neighbour, who must have spotted me on my excursions, told Trish that I had got my ‘swagger’ back. That was kind and I appreciate it a lot. But the truth is, I haven’t quite retrieved my swagger yet. But I’m working on it. I walk quite well… mostly... but the walk retains a studied, 'relearned' quality and is not quite second nature yet. If I meet somebody who I know and I walk along with them for a while, the conversation causes my stride-concentration to wane and the quality of the walking wanes a bit with it. I can walk pretty darned good and for a good long time. I just have to concentrate on it a little bit. When I’m by myself, I often quietly berate myself. “Walk right, you fucker,” I hiss, “stop fucking around.”

Today (Saturday), I dropped in on Anthony in the butcher’s shop, who shook my hand and sold me some stewing steak. Then I ambled along the river to Tesco and got the makings of a severe chilli. ‘Amble’ is good. When I am concentrating well, I can carry off a convincing amble, I reckon.

I think I’ve come to terms with the fact that I’m not all-better yet. I’m doing pretty great, that’s for sure, but, for example, while preparing my severe chilli, I found I couldn’t get the tin opener to work nor make the ring pulls on other tins bow to my will. (Don't judge me harshly on all those tins, there's lots of fresh stuff in my seevere chilli too, just kidney beans and tomatoes for the tins.) Time, and patience, that’s what’s needed. And a gently pushing on the door of the things I cannot yet do very well. An everyday ‘not settling’ for where I am at, while not pressing too far forward either. 

It’s a balancing act… a bit like the walking.

Another aspect of this ‘getting better’ lark is how some of the details of my respective stays in hospital and rehab seem to be gently fading away. I want to hold on to them, as much as I can, because they help me appreciate how fucking amazing my life is. On the other hand, I don’t think I can write all those things out, as that’s too much work and also many of the things that happened involve other people whose privacy I wouldn't want to mess with.

So, what I’m going to do is I’m going to allow myself a few keywords here. They may serve as an ‘aide memoir’ to me when I look back on this post in years to come (which is something I do). Each word tells a story, to me at least, and I don’t want to forget any of them.

So…

The Fist Fight. The Man Who Died, The Lady Who Came to Bed, The Man with the Three AM Toast (I’ll never forget that), The Tiktok Man, The Traditional Music Session, Brent, The ‘Write Down That He Is Afraid to Walk’ Man, Prune Juice, The Unassisted Walker, Delia, The Tuning Fork, Stan Laurel Reflexes, Cleetus’ High Fives, ‘Vincent’, If It’s Good Enough for The Baby, It’s Good Enough for Me, Naoise, Madeira Cake, The Expanding Room, The American Invasion of ‘Medical B’, Shane’s Playlist, MC’s AI Documentary, Peaceful Piano – American Songbook, ‘Tiptoes’, ‘Heels’, ‘You’re Hardly Using It At All… Put It Down,’ Porridge, How Uncomfortable a Wheelchair Gets, Alternating on Crutches, How The End of the Cycling Programme Looked Like a Crematorium, The Teeny Tiny Immunoglobin Bottle’…

Enough for now. Each of these things tells me a story. Maybe I'll recall them when I reread this.

For now, though, it’s time to go out in search of that swagger again.

Walk right, you little shit! 

GB

I remember seeing a joke in a comic when I was a boy. One character asked another, “If an ‘L’ sticker on the back of a car means ‘Learner,’ what does ‘GB’ stand for?” 

The answer was ‘Getting Better.’ Not very funny, not very memorable. Except it is, because for some reason I remember it.

Anyway, that’s the context for the title of this week’s post. Getting Better.

I’m getting better.

Those of you who read my previous post will know that I have landed myself with a thing called ‘Guillain-Barré Syndrome.’ (Note that GB can also refer to that… just in case you think I just throw these things together.) When I posted that last blog, two weeks ago, my GB (Guillain-Barré) was just on the verge of GB (Getting quite a bit Better). So I thought I’d better do a little update, for myself as much as for you, gentle reader.

A little over six weeks on from being admitted to hospital, I am pleased to report that I am back home again and walking, unaided, on my own two feet. I figured you’d be pleased to hear this… as I am.

I'll always say I was very lucky, because I was, but I pushed for it too. The medical advice was that it would take many months to get back to walking again and then the best part of a year to (hopefully) recover fully. In the six weeks it took me to get back to this stage, I have progressed through a sizeable list of moving devices and walking aids. These included, but were not restricted to, a wheelchair, sara stedy, standing support walking frame, gutter walker frame, regular walker frame, two crutches, two sticks, one stick and, um, no stick at all. That latter event happened quite recently. After a weekend of quietly practising with one stick, I was encouraged by my Physio to ‘just walk’ and, after a disbelieving few initial steps, that’s just what I did. And I’ve been continuing to do it ever since.

I think, somewhere in my head, I had equated the act of walking unaided with my being fully repaired. That is patently not the case. Although I can manage most things, albeit slowly and for a limited period of time, the 24/7 ‘electrical buzzing’ in my hands and feet is a constant reminder that the myelin sheath covering my nerve fibres is still largely stripped off and will need time to regenerate. In the meantime, I'm like a second rate Marvel Superhero. Let’s call me 'Minor but Constant Electrical Shock Man'. My Achilles Heel is that I can only inflict it on myself.

Although it was very far from glamorous, the strong feeling is that the most glamorous part of my repair/recovery is now over. My return to being fully ambulatory had elements of a Rocky training montage about it. I worked as hard as I could, pushed, was regimented, made faces, and finished with a gratuitous flourish. Then, wonder of wonders, I walked away. 

Now as I fumble with my shirt buttons and try to walk discreetly, the impressive part is clearly over. My mission now is to be patient, do what I need to do, and let the healing continue.

This patience part will not be my forte. But I mustn’t forget that hospitals were not my forte either. Nor were immobility or total dependency. But I learned, first how do them and then how to get past them. I will learn how to do this patience thing too.

One of the challenges may be for me not to forget how bad it got for a little while there. I have a tendency to deflect and create diversions around negative things. I belittle them to deal with them. But I sense that a key part of this patience thing may be the holding on to the memories of those scary early parts of this thing. The cool feel of the hospital floor tiles on my cheek. The scrunching discomfort and bleakness of the hoist.

I could easily trivialise what happened, particularly given my lucky speed of recovery to date.

But this was not a trivial thing.

Is not a trivial thing.

Patience? Let’s do it.