Today has been a day.
A long, good, exhausting, overwhelming day.
Up super early for all the Formula One stuff. No naps.
Obviously, its a Saturday, so that means its day out with Billy. Since I had the hospital at 3pm, we just headed into Dundee. Lots of wandering about, Billy bought some good shit. Pain, exhaustion, weakness, the whole lot hit me by 1pm. Its not so easy to hide it now.
By the time I got to the hospital, it was obvious I was absolutely fucked. Sitting in the waiting room, trying to keep the feeling in my arm, concentrating on the whole steady breathing thing, trying not to let everyone see that I couldn't stop shaking. I hate being in public like that, but hey, perfect timing really.
The neurologist summoned me, introduced himself, really lovely guy. He starts with the hard question and asks my age, I had to think about that way too much. Then he asks about history, I pull out the notes, he asks if can take it and I can see what I remember - next level cruelty, haha. He did praise my notes and level of detail.
Then goes the physical examination, he had already seen me walking and knew how dodgy that was. He starts with the very close up look into my eyes thing, ewwww. All sorts of things, limb movement and all that jazz. Lots of laughter when he got out the hammer for the reflexes and I exclaimed "oh no, your going to hit me with a hammer", at this point he had definitely twigged that I have a warped sense of humour. Then out comes the pin to stab me with, he did seem a bit concerned that I didn't feel him stabbing my right hand and arm at all. Few more checks and he goes "right, put your shoes on, I know whats wrong with you, I'll just get some paperwork sorted out for you".
Mind obviously starts racing, more slow breathing to keep calm.
He starts by saying "I want you to know, this is not caused by anything you have done or that has happened to you, its not your arthritis, your mental health or your fibro". At that point I just burst into tears (for which I apologised, because its me). Clear as day, he states that it is 100% Functional Neurological Disorder (as suspected). Limbs are my biggest issue, so we focus on the functional limb weakness. Lots of talk about brains being like supercomputers, saying they are special (and pointing out that I am not special - talk about bursting my happy delusion 😉) and that my brain is basically having a software malfunction, he doesn't know why this happens. He reminds me that movement disorders and neurology are his speciality (I know, I researched him before the appointment, not that I told him that). We talk more about it, what to do going forward, what to do if things get worse.
Wrapping up the appointment, he tells me that everything we have discussed will be in the letter he sends to me, and to the GP. He points out that people won't believe it, he says he sees it all the time, other professionals not believing it but he emphasises that this is real, his speciality and he will make sure my GP knows this.
He pointed out that I AM NOT GOING MAD! Oh, and he told me to stitch lots when I mentioned that that helps me so much, so it is medically approved for me to be obsessed with cross stitch, hurrah!
I thanked him for believing me, for the diagnosis, for the sense of relief.
I know this was what was suspected, but I truly believed I would be coming out of that appointment with a "we can't find anything wrong with you, off you pop". The sense of relief is strong, the overwhelm is real and I am bloody knackered, but way too hyped to rest just now.
To every single person who has supported me over the last year, as I fought with my body and my brain with all this scary shit going on, I bloody love you. You lot are marvellous!
