When I boarded the care-train a little over three years ago, I had no idea what to expect. What would it be like to get help from fellow passengers? Would I learn to trust them and build a good bond with them? And most importantly: where was this train even going? Did I have a destination at all?
If you’ve read more of my stories, you’ll know by now that I’m quite the expert by experience. Meaning, I’ve already answered most of the above questions through my tales.
The bond with the nurses who regularly come to my home is strong. They know exactly which drawer my underwear is in, can effortlessly operate the stairlift while I struggle with it every day, and they can sense my emotions perfectly. But that goes both ways. We’ve laughed together, sung songs, and even held mini dance parties while getting me dressed. If there wasn’t a wall of professionalism between us, we’d probably cry together too, thanks to the ever-changing rules in community care.
Of course, it’s not always sunshine and rainbows. Sometimes there are miscommunications, frustrations, and things you’d rather flush down the loo. That’s just part of it. We’re all human, and the nurses have lots of clients to care for. They can’t remember everything, and in fact, it’s impossible to do everything exactly how you, as a client, would like it. Mostly because no one can be in two places at once (unless you’re a magician, but they don’t work in community care, as far as I know).
I’m not the only client who needs to take their medication at 7:45 in the morning, and every client has their own appointments to attend. This makes it tricky for the nurses. They have to prioritize without disappointing too many clients at once. Luckily, if you can keep that in mind as a client, you can – as far as privacy allows – discuss it and find other solutions together. That’s why I’m so incredibly happy with my station clock!
Alright, it’s clear that I’ve learned a lot during my train journey, and because of that, the ride is going pretty well. But there’s still one question I haven’t been able to answer: where are we going? Is there even a destination?
When I first got on board, I thought not. I was used to seeing my illness only get worse, and when a stowaway with two red stripes snuck into my carriage four years ago, I thought I’d be stuck on the care-train forever. That the stowaway would tie himself to my congenital illness for the rest of my life, without ever being caught and kicked out.
At the beginning of this year, the diabetes specialist told me that if the stowaway kept playing with my blood sugar, I would need to start different medication – medication I really didn’t want. So I changed my diet and found ways to move that suited my limited body. All part of an experiment to see if I could get that stowaway kicked out of the train after all. Step by step, I managed to take back parts of my care and shrink the stowaway’s world.
During an evaluation a few days ago, I finally got to share the good news with the nurses: the stowaway has been caught and kicked out! I’m able to handle my personal care again. However, that stowaway left a few dirty spots that can’t be cleaned up, like the damage to my body clock. So I had to ask if I could keep the station clock to make sure I continue taking my medication on time. There are also some slippery spots left on the floor, increasing my risk of falling, so I wanted to keep my personal alarm system too.
My requests were approved by the conductor. Car 4 will even remain open for me in case I need help again in the future. They’ll also need to maintain the station clock and alarm system if necessary.
Until further notice, I’m allowed to step off the train and enjoy the fresh air and freedom. Because, boy, did that stowaway stink to high heaven!
I’m incredibly grateful to the caregivers who have traveled with me on this train for the past three years. Thanks to their support and constant effort to find solutions, the stowaway has been kicked out, and I’ve reached a destination. Something I never expected. Even though I hope I’ll never need the nurses help again, they’ll always have a special place in my heart. They shared their train with me, and it’s been quite the journey.
CRS Life 