Gadgets: elastic laces

It’s clear, by the contents of my washing line, that I’m spending a significant proportion of my life in pyjamas these days. I’d like to say I’m always up and dressed by 11am, but the truth is, on Tuesday and today, I’ve spent the entire day either asleep in bed, or awake in bed. The effort required to get dressed seems hardly worth it when I haven’t the stamina to leave my room, except when there’s cake involved. But on days when I’m awake and raring to go, the trickiest thing in the mornings is physically getting ready to leave the house. I’ve already written about the effect of hand pain on my piano playing, and it’s the fine motor skills that seem to disappear first thing in the morning.

Velociraptor hands

Velociraptor hands are a cross between:

  • that tingly puffy feeling a bit like chilblains when you put your hands on the radiator on a snowy day
  • that shocked, numb pain that you get if you’ve just smacked a wall, but also the bruisy feeling you’d get later
  • holding a golf ball in the palm of your hand while trying to pick up other things with your fingers
  • being a velociraptor – all enthusiasm but no flexibility in your fingers, so your hands just look a bit stupid and underevolved

Sometimes, a sprained feeling in my wrist also means I can’t support myself on handrails, so the long wobble downstairs to my Cheerios turns into an elbowy crab impression. Later on in the day, when I’m tired, my hands will shake and I’ll struggle to hold a piece of paper. (More on that next week – I’ve another gadget being delivered to the office.) By far the most infuriating morning symptom is being a velociraptor.

All in all, this makes getting dressed a nightmare. And when, inelegantly, you’ve crabbed downstairs; attempted cereally clumsy flailing in the kitchen; purposefully overbalanced against the wall, not the door of the shower; and sat to clean your teeth; the last hurdle of getting dressed quickly with velociraptor hands can be the difference between making it to the train before needing a rest, and needing a nap before going out at all thus bypassing the morning. On bad days, buttons, heels, zips and laces are all out of the question. But standards are standards, and I’m not quite ready for the beige velcro yet.

Elastic laces

This week’s fun gadget is the elastic shoelace. There are a few options available – coiled ones, thin laces with blobs on, and regular straight ones. Given my shoes are black, the laces aimed at kids (fluorescent and short)(the laces, not the kids), and boots (eyelet size much larger) wouldn’t work, plus I couldn’t find anywhere local to buy them. But after this weekend’s 5k run (watching my lovely sister), we headed to Teddington, where there’s a Sweatshop selling elastic laces. £5 for two pairs, when regular string ones are about £2 a pair.

As an aside, they also sell loads of coordinated lycra, if you’re someone who can do exercise and likes offending peoples’ eyes less than those in uncoordinated lycra, but more than those in real clothes. (That was not a pointed remark in any way. But honestly, mauve, fluoro yellow, and stripy blue and white? Almost as bad as tailored shorts… Culprits, you know who you are.)

How they work:

Just like normal laces, except there’s a mechanism at the top a bit like you have on a cagool, which you squeeze then tug gently to release the laces. If squeezing something that size is too difficult, it’s possible to put the shoes on without undoing the laces (you just have to hold the tongue in place), and very easy to kick them off, like slip-ons. I’d imagine as they wear in, the elastic will give a bit, so it’ll be yet easier. Unlike normal laces, elastic laces make your shoes grip your feet a bit more actively, so they feel less slippy when I’m wearing them too. They look ‘normal’ – noticeably different if you’re looking at them, but you’d have to be an extrovert computer scientist for that.

Why they’re brilliant:

It avoids the awkward conversation, which I have had:

Did you know, your laces are undone?
“Yes, I’d noticed, thank you.”
And?
“….”

How do you say that, while you know your laces need fastening, it’s too much energy to crouch down to them, and when you get there, you won’t be able to do them up anyway? I’ve not asked anyone to tie my shoelaces for me since I was, I don’t know, three or four? And then was usually family members, not colleagues…

Review: A complete energy, time, and dignity saver. 

PS If my Oxford commas annoy you, just say – I’m going through a phase of using them to see how it makes me feel.

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“So you can’t do stairs at the moment?” – responding well to disability

My CFS/ME has got to the stage of being noticeable, at least some of the time, and obvious to people that know me well. Some people, usually when I’m using a lift, walking slowly, or generally not being coordinated, will ask what’s wrong. Others don’t ask, which is more weird, especially if they ask if you’re better the next time they see you. So I’m at the point of telling family and friends, before it gets awkward. 

Telling friends you are seriously ill

For me, this is quite a difficult thing to do. Saying “I’m in debilitating pain, it’ll last for at least a year, and there’s not a lot doctors can do about it” to people who care about me, is always going to be sad, however you phrase it. I noticed this article in the LA Times, which helped, in a way, but as I’ve said before, I’m not dying, and it’s not as dramatic as that. But please do support my closest supporters if you can. 

I’ve been writing down how people respond to my news, because it’s helpful, when I’m anxious about getting a negative reaction, to recall all the positive ones. There are three standard ways people have responded:

1. “I know someone with that.”

The most common instant response.Well yes. I’m sure you do. In fact you know two people, and one of them is me. Yes, in time, I’d probably like to meet them, just as I’d like to meet any of your friends you think I’d get on with. But please don’t assume that now we’re in the “same disability” box, we’ll have anything much else in common, when we didn’t have enough in common for you to have introduced us before.
It’s tricky to know where to go from that statement, because I have no idea how mild or how severe their symptoms are, or in fact, with this illness, what their symptoms are.  So while your perception of my illness as the same as theirs is probably closer to the truth than having no preconceived idea, you have, in fact, stopped asking me what is wrong, and started telling me what is wrong with someone else I’ve never met.
However, the response “I know someone with that, and they’ve found it really helpful to do x,y and z” is definitely a good one – without that, I’d never have thought of blogging about it, and lost a good introvert’s outlet for my unravelling thoughts. Equally, “I know a mutual friend of ours, who had that, and recovered before you met them” is equally gladly received – if I know them already, it’s much more natural to have empathetic coffee together. 

2. “Oh dear, poor you.”

Sympathy isn’t bad in itself, and it helps to have people who are trying to understand the implications of my illness. However, I’m not “being brave”, or anything courageous like that. Being brave is choosing to do something that’s difficult. I have no choice about it, and if given the choice, wouldn’t choose to be unwell. What I would like to choose, however, is to be able to continue to do those things that my disability hasn’t taken away, that I did before I got ill.
The sympathetic friends, who are so anxious to care for me, will try to make sure I’m not overdoing things so much that they proceed to assume that I can’t do things, without asking first,  and that’s disabling. It remains my choice how I use my time and my energy, and that’s easiest to do when all the options are open.
But the sympathetic friends who ask me how we can adapt our previous social plans to fit in with my illness, by visiting me instead of expecting me to have the stamina to visit, and by calming me down when I get excitable that they have visited, have moved from “poor you” to “poor us, how will we cope with the impact this is having on our shared life together”. They’re shouldering some of the burden of my illness by going out of their way to allow us to manage some of what we enjoyed before. 

3. ‘Minimising’

I don’t know whether these people don’t know what chronic fatigue syndrome is, or if they’re just shy about talking about it. But I know that the adjustments people have to make in order to accommodate me well are considerable, both at work, and socially. Things like saying “you’re not visibly disabled”, or “yes, that’s fine, whatever you need” without really engaging with the underlying problem, don’t open the door to further conversations, when I need help. I’m the same person, I just need you to notice the way my life has changed, and the way that’ll impact you. I won’t always ask you to fetch me a chair, but I may stand longer than is comfortable because it takes more energy to lift it myself.

None of them are awful, but they aren’t perfect either. As I’m not “visibly disabled” (as one person put it), or rather, I look ‘normal’ at first glance, I’m well aware that these conversations come without much warning, and people can’t help their instant response if they’ve not previously considered it. I do always precede it with “I have some serious news”, or similar, and wait for them to put on a ‘serious news’ face before continuing. But why haven’t they considered it? Has it never come up before? 

What to say: a textbook response

This week I had one textbook awesome response, (when someone spotted me taking a stupidly short lift) which I’d like to share:

  • “So you can’t do stairs at the moment?” – literally, “I have observed something about you that has changed, please explain”.
  • “I don’t know much about that, could you tell me how it affects you?” – even if you know someone with CFS/ME, or something similar, you open up the chance for me to talk about my symptoms, and explain what I understand of it.
  • “If there’s anything I can do, or if you’d like to talk anytime, as a friend, please let me know.” – nothing prescriptive, just being open to help if you can. (This shouldn’t be  out of kilter with our previous friendship – if we’ve always been open to talking about anything, it’s not going to be a massive leap to extend that to my current situation.)

I could try and engineer a Christian-tastic alliterative three-point phrase out of that, but I’m not going to. Let me know if you have any suggestions.  

The ministry of funny walks: #1

The fluctuating nature of cfs/me means that everyday, a different part of me hurts in a different way. It might be sore, or refuse to bend, or not take any weight, or wobble sporadically. This means adapting my walking pattern to get anywhere. It’s an innovative new style every day. You might want to today’s Gait of Choice, for the fashionable girl-about-house.

Situation:

Today’s funny walk involves going up stairs at home. Our stairs at home are steep, with a carpet, so they’re clean and have good grip. I wouldn’t recommend this on the tube, in rush hour.

Preparation:

The key to this funny walk is to develop really wobbly legs, so you have to take the weight off them. Also, tire yourself out for a few days, so your joints all hurt so you can’t bend your legs or grip with your hands. It’s very important that the pain is equally distributed in every limb, and you’ve particular pain in your lower back, which twinges occasionally when you’re upright, to add excitement. Ow.

How the walk works:

Put anything you’re carrying in your mouth ideally, or at the side of one of the steps. Numbering the steps from the ground upwards, half fall forwards and put your right hand on step 3, left hand on step 2, and lift your left foot onto step 1. Your hands should be in the centre of the stairs, and your legs pushed out right to the edge, so you don’t have to bend your knees to lift them.

From this stage, shift your weight forward by kicking with your right leg, so your shoulders are over your right arm and your left leg is a bit bent, like frogs’ legs. Your arms are still central, so it shouldn’t involve rocking sideways. Depending on wrist pain, it might be helpful to point your fingers out sideways, and cross your wrists a bit to keep yourself centred. This new weight distribution frees up the left arm and right leg to go up two steps each. And repeat – rock forwards, take the weight on your front arm, shift opposite limbs up two steps.

By the end you feel like doing that party trick where people stick their knees out and rock upside down on their hands, like a cross between a monkey and a handstand. Or not. Because your face is so near the floor on this one, you can always fall onto it at the top if getting up is too much like hard work. Rest until your forehead gets carpet marks, the thing held in your mouth gets annoying, or somebody else wants to go downstairs.

Now, where was I? This phone bill looks a bit chewed…

Superpowers 1

So far, I’ve only experienced the more alarming physical symptoms of my illness, particularly the muscle shakes, as a negative experience. Certainly there have been unfortunate consequences – on Good Friday I played the piano at church with some decidedly dodgy harmonisation, simply because my hands were stiff and not up to stretching to the right keys. In particular, my right hand was awful – I was left with a range of about a fifth, rather than my usual octave-and-one – and the combination of muscle twitching and stiffness meant the signals from brain to hands were missing the intended keys. When normally, I just think which notes I want and my fingers go there, I was having to watch where my hands had landed, and adjust accordingly.

My first superpower has, surprisingly, come in my piano playing. Hymns etc are usually written out to have a simple single-line part in the left hand, with the harmonies coming from the right. Playing like this means certain chords, in particular sustained 4ths, or anything where your thumb and first finger sit on adjacent notes, is comfortable, so songwriters use them a lot. Harmonically, it’s dull, but easy to play.

Since my right hand has started shaking and being weak, without lots of variation in the relative strength of each finger, I’ve switched the dominance of my hands so the right hand simply carries the tune, with all the harmonies supported by the left. (My left wrist is painful, but my fingers still go where I tell them to, so it’s fine). Now I’ve acknowledged that this is happening, my playing’s much more reliable, but I’ve had to change the way I harmonise, in order to fit around the shape of my left hand – acrobatics would ensue if I wanted the right hand shapes to fit the wrong way up. So last time I practicesd, I ditched the unimaginative harmonies of mordern Christian songwriting, and made up my own.

The result has been incredible. I’m using 2nd chords more, 6ths, different inversions – a whole new creativity has come from seeing the song the other way up, and using the previously-hidden strengths of left-handed playing, which had been dwarfed by the superior dexterity (sorry) of my right hand. It’ll take a while to settle into – I’ve been right-hand dominant for 18 years of piano practice – but in time, my hope is that it’ll bring a different interpretation to what can be quite worn and tired hymns.

Time I put in some practice.