There has been a lot of focus on how my MS is progressing lately. My Neuro made some noises about Secondary Progressive and is switching my treatment accordingly, while my nurse has been making more referrals for me to be seen by more professionals. My latest one took just days to come through – a referral to the Re-enablement Centre to assess me for a swanky new wheelchair to suit my swanky new needs.
When I was given my first wheelchair a little over 2 years ago – pre-nasty relapse – I was over the moon and filled with optimism for my newfound independence. It didn’t take long, however, to realise the limitations of a fairly heavy self-propelled wheelchair. While it has been invaluable on days out with my family it has been close to useless when I’ve been on my own, especially when it comes to heaving it in and out of the car.
At the centre I was greeted by a friendly lady, PPE’d up to the hilt, who wheeled me into the assessment room. I’d only been in the room a matter of seconds before she jumped up to find a suitable ‘active user’ wheelchair for me to try out. When she finally brought one in we both sat and contemplated it for a few moments. It looked more compact than mine. It looked smarter than mine. But it still looked a little on the clunky side.
I transferred over with the help of the assessor, who was being extra cautious in case I should fall flat on my face. I performed a few doughnuts in the room before heading for the great outdoors, my assistant walking close behind me to avoid the ‘chair tipping over backwards. As any seasoned wheelchair user will know, wheeling outside is a world away from wheeling inside. The camber of the pavements, the hills, the slopes, the kerbs and the uneven surfaces all conspire to make self-propelling a logistical and physical nightmare. And so it was, as I heaved and pushed and grunted my way along the car park, that I realised that this wheelchair was as close to being useless as my original one.
Back in the assessment room we sat once more in silence pondering what to do next. Then, looking at me with a solemn seriousness, my assessor said, “This is going to be painful for you to hear, but what you really need is an electric wheelchair for when you’re out and about”. I looked at her, hoping that my face mask would hide my bafflement, and said, “Wouldn’t that be even harder for me to get in and out of the car?” To which she replied that I would need an adapted car so that I could either propel it up a ramp to the boot or use it as a replacement for the driver’s seat.
I don’t think I’m in any sort of denial when I say that I really, truly am not at that level of disability, and hope never to be, and I said as much. This left us with one more option – I could take the value of the ‘active user’ wheelchair on offer and put the money towards a rather more sophisticated and life-enhancing super duper wheelchair of my choosing. This is my official plan, which, I have to say, would not be possible were it not for the generosity of some incredibly supportive family and friends. As always, I am bowled over by the love.