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. 

In hope of wheels

Because I was late today (because it took me three attempts to back down the driveway), my OT met me at the door of the hospital with a wheelchair. I don’t think that’s part and parcel of the Enable Wheelchair and Seating Outreach clinic, but it was a nice touch.

Enable NZ are contracted by the Ministry of Health to assess for and purchase disability equipment. These folk are going to put together an application (to MoH) for approval for me to trial two wheelchairs; one of which is powered, and one I’ll propel with my feet (shuffle shuffle). If my application is approved, Enable will source the chairs, which will take two or three months. If the chairs are a success, they’ll put in an application for funding to buy them. If that’s approved, I’ll have chair(s) by early next year.

Today was great. I came away feeling like someone with the right knowledge and authority is going to try, on my behalf, to get me what I need. Bonza. What’s frustrating is that it took ten months, and a lot of effort on my part, to get to this point. I know mine is a common story, and that others with far more urgent needs than mine have suffered worse, but I thought I’d share the circles I had to tread to make it this far.

1. Despite my symptoms and family history pointing towards FSH, it took three attempts (and three months) to persuade my GP that I should be referred to a neurologist.

2. Another month, (and $500) later, I had a clinical diagnosis, but no advice on how to manage my condition. When I asked about adaptive equipment, the neurologist said that my GP should organise an occupational therapist.

3. Back to the GP: she was unclear on the purpose of seeing an OT. But referred me to one when I insisted on it.

4. After spending two months on the waiting list, then seeing an OT three times over another month, she told me I was unlikely to meet the criteria for wheelchair funding. Could my Dad (who is involved with furniture design) or the Muscular Dystrophy Association help?

5. The MDA advised that my OT should apply for funding through Enable NZ. When I asked my OT to refer me to Enable, she said I need to be assessed by a different OT first. But I’d need to be patient, because that would take a few months.

6. Minor tantrum via email.

7. Another month, another OT, another assessment.  I was finally referred to the wheelchair clinic. A month away.

It’s incredible that it’s taken this much time and energy just to get the start of the application process. And I still don’t know whether I’ll get funding – apparently I fall through somewhere in the gaps between the eligibility criteria. Sometimes it feels as though I’m not a valid invalid because my legs still work, because my invisibility cloak hides the fact that each step is still a struggle. But today I met two people who knew better, and, without question, accepted that a wheelchair could very possibly be the key for me to access more of life again. And for that I am truly grateful.