All posts tagged writing

Going out on a limb

Last November, I set out to do two things: write 30 blog posts in 30 days, and complete an online course about the anatomy of the upper limbs. I didn’t really expect to be able to do both in a month. Mostly I was just looking for the motivation to practice using voice recognition and develop some kind of “work” routine. I was aiming for two hours each day, divided into manageable chunks. Blogging was the top priority (and more appealing), so I would spend most of my days drafting posts and playing catch up for days I’d missed. The online course fell by the wayside. As I neglected the lectures and quizzes about the pathologies of the arms and hands, I developed just that; a new pathology in my arms and hands.

Posture looks simple, when you see those pictures of crash-test-dummies sitting at their computers, diligently keeping their backs straight and tummies firm. Ideally, everything is supposed to be at right angles, but it’s really hard to achieve that when you are trying to prop up sagging shoulders and the weak neck with a big heavy head on it. It’s especially hard to achieve that when you are making-do with a couch and some bits of rubber foam because the government is too cheap to provide specialist seating.

These past couple of years, I’ve been so focused on trying to support my head and shoulders while I work, I haven’t really thought about the position of my arms and hands. I’ve been getting better at using voice recognition software, but using Dragon without a mouse is pretty difficult. Actually, it’s frustrating to the point of paralysis. So while I was blogging, I would use a wireless mouse, balancing it on my knee or the couch.

So here I am, blogging away, editing and over-editing, tap tap tapping with my fingers and my hands and my wrists and my arms in all the wrong positions. It only took a few weeks to develop a secondary injury. It started as a niggle and a tingle, but it quickly reached the point where mousing for 15 minutes would leave my wrists, hands and sometimes even my armpits in pain all day. I had to concede that 30 posts in 30 days wasn’t going to happen.

It’s a terrible cliche, but so often it feels like I take a step forward, then two steps backwards. I was actually making progress with “working”, and suddenly there’s this whole new problem to deal with. Not only does it hurt to use a mouse, but now it’s also hard to chop vegetables, use scissors and floss my teeth. Luckily, with the help of my OT, a hand therapist, and some anti-inflammatories, much of the pain has subsided. It still flares up frequently, and I need to be really careful about how much I use my hands, but it’s mostly manageable. I’m learning how to use my voice to replace mouse commands, and I have an adorable new mouse shaped like a penguin with a bowtie.

People often ask me whether my condition has advanced, or whether I’m getting worse. In lots of ways I am worse, because muscles my lower back, my arms and wrists, my head and neck have become strained and inflamed as I try and compensate for the weaknesses in my shoulders. Having said that, I am also better. I’m better at understanding where the pain comes from, and how it manifests in my brain. I’m better at managing it with drugs, pacing, and exercises. I’m better at adapting to the physical environment and using the equipment I do have. As much as it might have been useful to know more about the physiology of my upper body, learning all of this life stuff is really more important. So I’m not so sad I didn’t finish that course. And I reckon 13 blog post ain’t bad.

The Spoon Theory

The Spoon Theory, written by Christine Miserandino on her blog “But You Don’t Look Sick” is quite popular with the disability crowd. It’s essentially a story about living with lupus, and how she starts each day with a handful of spoons. Each time she does something taxing, she loses a spoon, and eventually they are all gone.

Some people don’t like the spoon theory at all, like this guy. I have my doubts, too. I probably would’ve chosen a different metaphor, because who starts or ends their day holding a bunch of spoons? Or any other cutlery, for that matter? I also don’t believe that so-called “healthy” people have an infinite amount of spoons. We’re all counting something: hours, dollars, patience… But the thing I like least is the sickening purple design. Ugh.

Despite my reservations, I think the story is a useful illustration of the limitations of fatigue and pain. I identify with it a lot, though my spoons are different from Miserandino’s. Mostly I don’t have much trouble getting up and dressed (other than choosing which dress to wear), but sometimes breakfast costs a spoon. Driving always burns through spoons. Computing is very spoon-intensive. Sometimes I’ll use up three spoons just having coffee, because the cafe chairs are crap and there aren’t any walls to lean against.

I often feel like it hard to describe all these things. So I’m pro-spoon. But not like this guy.

Dragon

Hi how are you? It’s been a while.

I’ve been spending the last few months getting to know Dragon. Dragon and I were introduced by an excellent OT called Fran Smith. My equally excellent GP recommended Fran when I decided it wasn’t worth waiting for the DHB to deliver something useful (more grumbling on that note later).

Fran specialises in back-to-work assistance, and is very much focused on what her clients can do. So, for example, I can sit upright or partially reclined, in a comfortable chair, for a certain amount of time. Based on that, we have developed a “work” set up using my couch and various cushions. She also put me in touch with a clever optometrist from Tawa, who has designed an ungainly but effective device to hold a laptop or monitor in any position. It took us a while to figure out that typing was a no-go. Even with specialised keyboards, it seemed that it was too much to ask of my shoulders. Here’s where Dragon comes in.

Dragon is a piece of software which enables its user to input text through a microphone headset and look just like Christina Aguilera. It’s very clever. And very, very frustrating. When I first started using it, I felt like I was trying to use a computer in a different language. No matter how well I enunciated (N Nuncio Ted), every word seemed to play Chinese Whispers before it got to the page. My cursor seemed like a little kid trying to piss off its parents, doing the exact opposite of what I had requested. All the windows seemed haunted, popping up and disappearing at will. I wasn’t sure it was worth pursuing this relationship.

Six months later, Dragon and I are getting on all right. Mostly. We’ve come to a compromise: I use a mouse for pointing and clicking, and speak the rest. Dragon understands me a lot better now, and I’m learning to tolerate its stubborn nature. There are definitely times when it’s just easier to click out each letter with the on-screen keyboard. You gotta know how to pick your battles.

I hate it sometimes, but with Dragon I can finally see myself working again. I can actually imagine myself in an office, talking in monotone, repeating myself, spelling out words, annoying my colleagues. Contributing. Engaging. Being paid. For that, I’m willing to build all kinds of bridges.

Awkward introductions

My disability has an invisibility cloak. It’ll sneak right past you in the hallway and you’ll barely turn your head. It doesn’t introduce itself, and it doesn’t leave a calling card. So I either:

a) introduce it: “and this is my invisible friend Muscular Dystrophy…” or,

b) pretend it’s not there (people don’t need much convincing; I’m much better company than my disability).

I’m finding more and more that neither approach is ideal. If I do talk about it, I’ve got to figure out how to put it all into words, which is tricky when I’m not even sure exactly what my diagnosis is, how to treat it, or what my future might look like. Then there’s trying to describe what it’s like to live with it, without downplaying it/crying/killing the conversation. Followed by the awkward bit when people don’t know what to say – unless they happen to know someone who knew someone who cured their MS with catholic healing and it was amazing and I really really should try it.

On the other hand, if I don’t talk about it, you don’t get to see what’s really going on for me, and how much has changed since I stopped being able-bodied. I won’t be able to explain why I can’t come to your birthday party, or how it helps if you carry my bag for me. Also, since most of my time and energy goes to managing my disability these days, I don’t have much other conversational material (and can only recount so many episodes of Masterchef before you start counting the sugar packets).

So I thought I’d try writing a blog about living with a disability, where I can be self-indulgent if I want (it’s kind of mandatory, right?), and you can read what you like. Maybe my stories will help you understand a bit better, or help other people with disabilities, or maybe it will just help me out with a bit of cathartic ranting.

Why This Thing’s Got Legs? Well, you see, I’ve got great legs. They work perfectly, and probably will for quite a while. I’ve also still got a brain and a heart and courage and a yellow brick road to walk them down, even if I’m going slower than I’d like. And I figure I’ve gotta keep that in mind.

This thing's got legs