I just came to do a write up on today’s appointment with a neurologist, who specialises in functional neurology. Or dysfunctional.
Arguably this may have been the best appointment I’ve had in the last 5 years, aside from actually explaining why my body is misfiring all over, she’s actually doing referrals to help me manage it all more effectively.
Something happened which initially triggered the symptoms I have. Now I’m stuck in a cycle where the symptoms have become the triggers, like how when I’ve done more than I should have (sometimes just washing up), it then triggers internal vibrations and tremors. Or pain, inflammation and neuropathy.
She believes my main issues are chronic fatigue syndrome, dysautonomia and FND (Functional Neurological Disorder). These cover everything, including tremors, POTS, light sensitivity, cognitive dysfunction, temperature regulation issues, sensory issues. The list really does go on and the problem is that I’ve got a LOT of it. She pointed out how every key symptom of ME I have, then add in dysautonomia and FND issues and it’s the world’s shittiest cocktail.
She explained how the infrastructure in the NHS limits what help is available, despite how much she wants to help me. That being said, she’s doing a lot. First step is for me to do research using websites, apps and podcasts/audiobooks she’s sent me. These will give me a better understanding of how it all works together, the idea being that the more I understand how my body works, the better I can listen to my body and try to reduce triggers. She’s also getting me on the list for the FND Education course to help with this too.
The idea around “use it or lose it” is true, but it has to be using it while trying to avoid triggering more symptoms to kick off. So she’s referring me for neuro-physiotherapy to help build better connections between my brain and body, and maybe even see some improvement. But at least better management. This may also help bring my body to a place where I could consider a manual wheelchair in some situations, to bring in more movement. She’s happy with how/when I use my electric wheelchair, but she doesn’t think my body could currently cope with the exertion of using a manual chair.
She’s going to ask my GP to finally refer me to a chronic fatigue clinic. She can’t do this referral, given it would come from a service which technically covers ME/CFS it would likely be refused. So asking my GP to do it should give me a chance of getting into this service to get a management plan for the CFS.
She’s happy with the therapy I’ve done with Lee, and that I’m continuing with a new therapist (I still miss Lee!). So she isn’t going to do a MH referral for CBT, for which I’m grateful. If you’ve been here since the start, you’ll know CBT put me in a very dangerous place before I found Lee.
I also have an app for tracking energy and emotions, including identifying where in the body I feel this emotion. I do a lot of energy work, and clearing emotions, so I think this will help strengthen these practices a lot.
Needless to say, I’m fucking exhausted. It was in an old building at Southmead, where the car park is at the top of a hill. My car was parked higher than the roof of the building I was in. My legs are wrecked, I’m home with some tremors and internal vibrations and I’m totally empty. But I do think this appointment was worth it.
There’s only so much I can do myself to help manage symptoms, but being disabled with absolutely no support, physio or occupational therapy is hard work. It’s certainly not something I’m going to have the knowledge on how to properly manage or even fix. So to finally have someone who’s referring me for help with this feels like a huge success, along with understanding why it’s all happening in the first place.
And bonus points because she highlighted that it all started after my vaccine, including the Hemicrania and occipital neuralgia. I don’t raise this in appointments now, but she’d read my records and made the observation herself which was great.
Now I’m switching off; tomorrow I have to be in Southmead for reprogramming at 9:20 am, so I’m going to need all the rest I can get to be able to drive safely there and back!