I have been writing, I’ve just chosen, for various reasons, not to share them. Some were raw emotions from UKCVFamily losing a member, which is hard hitting every single time. Others were a bit too personal and the rest was gibberish of some sort.
However, I’m sharing this one! Yesterday was a big day out with Laura, Kalie and Dan to have lunch in Bristol to celebrate Kalie’s birthday early. Within hours of the day being arrange I received an email confirming my request for a reprogramming session on my implant had been granted but was the same day.
These amazing friends of mine immediately suggested they come with me rather than us driving separately, even though this would mean a longer day for them. And boy, oh boy am I glad to have had my lucky charms there!
Having support meant I could use my chair, which was fab as yesterday I was on energy rations, rather than staggering and stumbling through the hospital. I had a thorough session with the tech who did lots of tweaking to my device and then he called my surgeon in at the end.
He noted the chair being new, but that I was looking much better than when we’d last met. I confirmed both were correct but that my legs weren’t improving along with the energy levels and the head pains. We discussed and he asserted I needed tests, which I’d assured him I really had been trying for a long time to get. He suggested my neurologist, so I told him what a disaster that avenue was. He stated that I just needed a diagnosis, to which I cheered “finally someone that’s speaking my language!” We chatted more and I made clear that I’m ok if this is the best I ever am, I just want a diagnosis so I can prevent further deterioration, including with the incontinence which we had an awkward discussion over. He asked how the “waterworks” were and I simply stated they were “wet”. *face palms* But we both agreed that together it was all “a problem” that could have implications on my implant if I do have nerve damage as a result of the vaccine.
The discussion ended with him asking if I’d had a nerve conduction study, I told him that’s what I was chasing for. To which he simply replied “that’s fine, we’ll get you into the neurophysiology unit here for assessments and testing to find out what’s going on, plus more scans if necessary. Are you ok with that plan?” “Um, shit, that would be amazing. Thank you!” He said it like it was so problem, not even the slightest bit of bother. So why oh why has it been so hard for anyone else to actually fucking help in the last few years?!
I think the shock factor of the chair played its part – a true visualisation that things really are getting worse and I’m not milking it because I’m perfectly happy to state where I’m making improvements too. And of course my three lucky charms who patiently waited the whole HOUR of my appointment. For reference these usually take around 20 minutes.
And then it was off to lunch, once we’d armed ourselves with sweet and chocolatey drinks from Costa at the exit. Again I stuck with the chair – I usually can’t do anything but my reprogramming session, so taking the physical out of the equation made yesterday much more manageable and I’m lucky that those around me make me feel perfectly normal in my chair, as if I’m just walking beside them like I normally would.
We had a lovely ‘walk’ from the car park to Za Za Bazaar, in the lovely sunshine and through the water fountains, stopping to get a quick photo of me in my motor to show you all. The chair actually came in handy for the restaurant with the up and downs to the buffets, because I wasn’t just going to eat one dish. I aimed to mostly be sensible avoiding obvious MCAS triggers, but I was also armed with antihistamines and there to have a good time.
The food was bloody divine and I know for certain I’ll be dragging everyone back for my birthday. But most of all I just had the most wonderful day, full of love and laughter with my incredible friends. We really did laugh a lot, we end up talking about the most random topics and it flows so easily in their company.
I don’t know how I got so lucky in life to have the friends that I do. They don’t mind my unreliability with my health, or with Riley not able to be left alone currently, they don’t make me feel disabled or different. It’s so normal, I feel so normal and that’s the greatest gift they could ever give me. Yesterday was a bloody amazing day from start to finish and I’m already looking forward to planning the next one!
