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.

 

 

Musical chairs

A few people have asked me recently how I’m getting on with finding a wheelchair. The short answer is, terribly. I’ve been avoiding  giving the long answer, because just talking about it makes me want to scream. But here goes.

Initially, things actually looked quite encouraging. Enable NZ happened to have a power-chair in store with the functions we figured I might need. I was able to try that, and a manual chair, within a couple of months. The manual chair is new and light and has a fancy honeycomb cushion. The power-chair goes up and down and back and forth and fast and slow and is very nifty. My technician estimates it’s probably worth about $18,000, which is pretty generous for public funding. But neither are worth much to me.

At the moment, when I use either of the chairs for a decent length of time, my pain levels shoot up. Not only is the pain more intense, but it spreads further into my head and neck, and it lasts for longer. I don’t know exactly why, but something about the positioning and support (or lack thereof) just doesn’t work for my body.  I’ve explained this to my OT and physio on numerous occasions, but they always just make me feel like I’m being fussy. Like I’m asking for chorizo instead of mushrooms with my big breakfast. They don’t seem to understand that if the chairs cause additional pain, they don’t meet my needs, and they’re not worth using.

The DHB did order a new backrest and headrest for me to try, but when these weren’t successful, they weren’t willing to keep looking for other, more suitable products. When I make suggestions from my own research, the answer is always “that won’t work”; but no-one seems interested in finding a solution that will. There has been very little analysis of my posture or musculature, and zero thought about what might exist beyond this one power-chair, which has proved over and over to be unhelpful.

Having a wheelchair that supports me adequately would open a whole range of opportunities for me. It would mean that I could commit to social events and voluntary or paid work, because I’d know that I could sit for a while in any location. I’m sick of turning down offers and leaving early and desperately looking for walls to lean my head against. I’ve been in the system for eighteen months, and it feels like I’ve spent most of that time in the too-hard basket. The hospital should be trying harder and thinking much much smarter to find a solution.

Why can’t we be as good at serving complex health needs as we are at serving brunch?

In praise of the 11 o’clock ladies

I have a lot of gripes about the deficits of the public-health system, but I do have to thank them for introducing me to hydrotherapy. Last year, a physiotherapist from Hutt Hospital put me on a six-week treatment course in their ancient physio pool. She taught me a gentle exercise routine for my upper body, and showed me how to use flotation devices to support myself to move about in the pool. When my six weeks were up, I graduated to an unsupervised group which used the pool for half an hour at eleven-thirty each Tuesday and Thursday.

When I showed up for my first unstructured session, I found that I was the only person getting into the water, though there were a gaggle of women in their 60s and 70s heading for the changing room. It turned out that my “group” consisted of me, and occasionally a very round woman in her 70s who was recovering from a hip replacement but couldn’t remember which hip it had been. For company I had Ellen, the twenty-something physio assistant. She was pregnant and spent her Saturday nights at the Cossie Club in Upper Hutt, listening to her boyfriend’s covers band.

I learned that the eleven o’clock ladies were a group from Arthritis NZ who had been coming to the pool together for years. I listened to them as I shared their changing room or waited for their stragglers to make their way out of the pool, politely cursing the cold. Over the weeks I came to recognise them individually by their swimsuits, their different pained walks and their cheerful – or grizzling – interactions with Ellen. Often I would arrive early, and Ellen would let me join the last few women in the water as they finished up their exercises. They welcomed me enthusiastically, complemented my swimwear, and missed no opportunity to tell me about their grandchildren. At some point Francine (seventy-ish, purple togs, gold jewellery, cleavage) invited me to join them for morning tea at the hospital cafe, where they would meet after each session in the pool.

Because I was spending a lot of time by myself at that point, coffee with the eleven o’clock ladies became a much-needed ritual. I would always arrive after them, and they would interrupt their conversation to fuss about making a space at the table for me and my walker. The chat never strayed far from grandchildren and domestic life, but they weren’t your usual group of Lower Hutt grandmas. I enjoyed watching their stories unfold like characters in a novel, each coffee-date chapter in elaborating a little more on their past and current lives.

Grace, stoic and selfless, lived with the daily trial of Lupus, but never complained about her own symptoms, even when it was obvious she was suffering badly. Maria, shy and pale, wore the thickest glasses I’ve ever seen. Helen lived in a council flat in Epuni, and was surprisingly candid about the abuse in her past. Linda, an Australian property manager, enthusiastically warned against renting to Samoans. Annie, younger and slimmer than the others, had moved to Lower Hutt from China for her husband’s business interests. Shanthi’s kids had left home, and she was filling the gap with a community arts project.

They were all so different, but they were strong allies, and very generous with each other. I often noticed them swapping sewing patterns or excess beetroot, and we all received baked goods at Christmas. They welcomed me into their club and were delighted that I was half their age. They asked every week how my driving was going and always noticed if my mobility was worse than usual. They knew all about pain and weren’t afraid to talk about it, but always made me smile. The 11 o’clock ladies were an unlikely support group for a twenty-eight year old coming to terms with Muscular Dystrophy, but I couldn’t have asked for better. 

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.