Day's Events,  Medical Update,  Travel

January: home to the heat

I guess this is my monthly update and my chance to give an update on my condition, considering I’ve been silent for the whole month. You can’t blame me for needing time to adjust from 1°C in Prague to Adelaide being perhaps the hottest city in the planet this week at 47°C in the CBD!

For those friends already looking to visit me I’ve had to explain that I’m bedridden still. I’m not able go out and catch up over dinners or lunches. People have to sit at my bedside while I’m stuck mostly horizontal in one of few ‘relief’ positions that don’t trigger pain.

The fact is I’ve returned home more disabled that I was when I left, and that means setting up the house with new equipment. As prepared as we tried to be with the flight, a few things were more difficult than they needed to be, too, not least of which being Emirates leaving my wheelchair and the big box of my mobility equipment behind in Dubai.

No, really, they did!

The first flight ran late so the connection was short and obviously they ran out of time when transferring things – but surely there should be a way to prioritise medical equipment? Apparently not.

The guy who told us that 4 of the 6 luggage pieces didn’t make it at first really didn’t catch the significance of that. We kind of stared at him blankly – me, in pain, in the terribly uncomfortable chairs they put you in, no handles to push yourself and with staff assigned to push you whether you want them or not – and he went “Oh!” and went off to organise loan of a chair from Adelaide airport. I assume they expected me to crawl home. I was grumpy as hell but it’s hard to express anger when you’re being pushed around and unable to direct yourself. Hard to assert yourself without agency.

That interaction was balanced by two separate people recognising me and approaching me, which is surreal. Especially following a long flight where I’d taken heavy pain killers and had little sleep. The whole trip was a blur. Particularly when I had to psych myself up to sit painfully upright for take off and landing. There’s just no getting around needing to be up for that, as much as we asked if I could recline.

The drive home was another blur, starting to feel that fuzzy dizziness that jet-lag brings, my ears needing to pop and my stomach growling.

Anyway I’ve told this story of my flight and return because of how abruptly that dreamlike state was broken when we arrived home. Because, you see, I needed the things in that box that didn’t make it. It was the realisation that I can’t use the toilet which hit me hard, and suddenly the build up mix of sad and angry overflowed.

The average toilet seat is just too low! If I tried I would fall into it and not be able to get up. It would hurt. It was so strange to realise that of course most private toilets don’t have hand-holds and bars, and that I’d come to take for granted the public and hotel toilets I’d been using, which often even when not disability access had them. Of course home toilets don’t have those things.

I have become dependent on the over-the-toilet seat frame we bought, which was then waiting for us in Dubai. Not being able to use the toilet in my own house upset me more than I could have predicted. I guess for what it represented – I was back home with everything so familiar to me, yet it had become strange to me in being unusable, in not working for this new me. It was the realisation that it was going to take a lot of work and a lot of set up to make my home comfortable. That getting ‘back to normal’ was a long way away. Things are going to be different now.

I don’t want to make this a long-ass essay, but there’s more updates to give!

I’ve been booked to be admitted to the Royal Adelaide hospital next week. When your doctors ask you, “Are you willing to be an inpatient to get the services you need and be eligible for more?” the answer is, of course, a begrudging “If I have to…”.

Nobody likes being in hospital, but the trouble is I’ll be waiting weeks for referrals, and admission will mean avoiding the painful, exhausting and time consuming work that is travelling to and from appointments. I just can’t sit upright and there needs to be accommodation of my ‘relief’ position when I arrive at my destination or I just can’t go – sitting in waiting rooms is agony, and most places aren’t prepared to deal with someone with my issues.

So we’re sort of gaming the system, to get immediate access to doctors, who can come to me instead. We shouldn’t have to do that, but what’s the alternative? We ideally need transport like we had in Prague, something with a gurney that doesn’t involve me illegally lying down in the car. We need a reclined chair in appointments, and there’s no getting around how vast the new RAH is, and the distance and wait times involved. Ideally, I should be eligible for Rehab In The Home – but I’m not because you need to be recently inpatient.

I hate being in hospital. I want to have the privacy of my own bedroom in a comfortable bed….but if it gets me a pain specialist ASAP… I’ll do whatever I have to do.

Maybe I’m not getting worse, but I’m not getting significantly better either, not in ways that are going to improve my independence. I need guidance and experts. Maybe I’m standing for longer, walking further… but the next step of improvement is going to be a leap: lowering pain relief medication, learning what physiotherapy to do, SITTING UP without pain, which is the greatest barrier to plenty of things.

Isn’t it just so ironic, to be too cripple to get to rehab… to be in too much pain to make it to the pain specialist.

Isn’t that a block of text! Thank you if you’ve read this far through my venting!

Apparently I needed it!


  • Richard and Annette

    You have keft us peechless. And in tears. It’s an angry wine dark sea you are crossing. Your courage is moving. As Winston Churchill said … courage is the foremost human quality, it makes all other things possible.
    Shine on.

  • Clare & Richard

    Oh my word girl just when you think it couldn’t get any harder for you x x x Emirates excelled themselves!

    I just need to point out the number of disabled toilets that have grab rails on the wrong side when your left arm doesn’t work I’m feeling your pain x x x x