Welcome back to another instalment of Mobility Monday!
A bit of a health update in with this one too.
We had a break of hospital appointments over the Christmas and New Year period and gosh was it needed. As a family of 4 with chronic illness things can occasionally get very overwhelming. Honestly, I was getting to that point of breakdown before Christmas with everything piling up with our collective health and my NHS wheelchair constantly breaking down. It’s a dark place to be in when there’s no realistic light at the end of the tunnel, just appointment after appointment after appointment until inevitable decline (and that’s when the real serious stuff kicks in). The way I cope with looking ahead into a future where both my sons will need dialysis/transplant and a myriad of immuno-suppressant drugs for the rest of their lives is to basically not do it. I just don’t think about it. What will be will be and we’ll deal with it for both of them when the time comes but sometimes, just sometimes, when you’re ill and things are going wrong and breaking and everyone is stressed and you’re up in big London hospitals multiple times a week it’s easy to feel this suffocating blanket of doom slowly being pulled over you. A lack of control. The unknown. So many questions and so much stress.
As you can imagine, getting my wheelchair situation sorted with the help of so many wonderful family, friends and strangers support alongside the fantastic team at Lith-Tech really helped me see more clearly in a time where I was struggling to find the positives.
Our first trip back to Evelina London Children’s Hospital started soon after the new year, with a double appointment of physiotherapy and occupational therapy for Sullivan. The Smart Chair 1XL was a joy to simply pop into the back of our car and head off straight away. We usually have to set out very early due to immense London traffic, so being able to easily load a wheelchair into the car rather than having to deconstruct a heavy, unforgiving wheelchair is super convenient.
Parking at Evelina London is extremely limited. There are under 10 parking spaces and each is lined down both sides with parking for cyclists and pebbled growing areas for trees. Every time we travel we are either lucky enough to grab one of these tight spaces or we have to use the drop off point at the entrance. Both can be pretty tricky in regard to space to manoeuvre and time to get unloaded (due to the small spaces, emergency vehicles and other patients needing to park/drop off). Doing this trip with the S-C 1XL was a breeze! At the moment, our Motability car is big enough that we don’t even need to fold the wheelchair down, so it takes less than 30 seconds to get it out and ready for me to transfer to. However even when folded, it is still so quick and effortless.
The wheelchair handled the significantly steep slope access into the older St. Thomas’ side of the hospital with ease. Navigation into and out of the very small lifts and corridors filled with seating, toys and stretched legs was trouble-free. Both of Sullivan’s appointments went well, although extremely fatiguing for all of us. When you have an hour between appointments to sit in an uncomfortably hot and echoey waiting room surrounded by children, noisy toys and constant movement, listening for your child’s name to be called on the off chance they are running early whilst trying not to fall asleep in this weird cocoon of bustling hospital life… it makes you knackered! Well, it does for me anyway. I felt like I could almost physically watch my inner batteries draining away like a swirling pool of water down a plughole. Fortunately, the batteries on the S-C 1XL are superb and so long-lasting compared to my NHS wheelchair. I hadn’t charged it since New Year and it was still full on the light gauge. No fatigue from my ‘chair at all, just from me!
We’ve had a few appointments since and are back again tomorrow for a double Nephrology appointment for both Sullivan and Thom. Then the prep for Sullivan’s tests starts ahead of his admission for a big dental operation coming in the next few months. I’m terrified of this bit as he has such a huge medical/blood/needle/examination phobia but as he has to have so many procedures and tests moving forwards into his kidney disease progression throughout his childhood, Evelina hospital have given us a neurology team to work with who are being great at bringing everyone together to work with Sullivan’s anxieties, rather than just holding him down and forcing him to undergo procedures. I’m so grateful they all believe when extended and regular testing is going to be done throughout the child’s life, you can’t just force the child and hope for the best. It will make each appointment worse and worse.
Through all of this, what I can rely on is the fact that I can get to these appointments now. I can take a cab if needed or have someone drop me off in their car, if something is wrong with mine. I can rely on my wheelchair having superb long-lasting battery during an extended stay in hospital. My mobility when I’m in my new wheelchair is one less thing I have to worry about in this sometimes hugely anxiety-riddled situation and for that, I’m so grateful.
Next week I’ll be chatting about ordering my new shiny Motability car. It’s orange!