1.45pm - 2.44pm
(quite tired and symptoms are flaring so it's taking me a while to the and I'm just typing in little chucks)
So far I've only had a cluster of myoclonic seizures and an absence seizure. I'm hoping I will have another tonic-conic seizure with a really strong aura as my one yesterday didn't have a strong aura and I want the EEG to see if there is the possibility that some of my seizures could be epileptic.
I expressed my worry to the neurophysiologist that's been coming and seeing me each morning that I was worried that not all my seizures will be captured on the EEG and them missing a possible epileptic seizure and it leading to a misdiagnosis i.e. all my seizures are non-epileptic. I think part of my thinking and I don't want this to be taken the wrong way, but with epilepsy there's medication and treatment and hope but with non-epileptic seizures there's just management and learning to live with them and at the way my FND and M.E. is at the moment I'm struggling to just get through the day some days and my seizures control my life. There's also the prejudice, especially at my local hospital and with my GP around non-epileptic seizure and functional conditions like FND and M.E. that is also worrying me.
Thankfully I'm seeing my consultant Professor Edwards next month so hopefully he can look at my video telemetry and EEG results and put together a care plan and hopefully try and educate my GP and local hospital and ambulance trust a bit better on how to care for me and also sort out this palaver with the referral he made for me to go to Leeds for neuro rehab where they specialise in M.E. and FND.
For now I just continue to wait for the seizures to come and keep myself occupied in the meantime.
The hospital have been okay-isa with my dietary needs; getting me oat milk for my drinks but I am getting a bit bored of quorn sandwiches and plain salad every dinner time and a jacket potato with plain salad every tea time.
The colloquial language barrier between the north and south also confuses things a bit at medication time as I say 'dinner time meds' and to them that's evening meal meds not midday meds.
I've way over packed on things like entertainment as I'm mostly making the most of my WiFi and my sticker-by-numbers book and I'm not getting through all the snacks i bought except the flavoured coffee sachets.
At lunchtime I had a little wit of a wobble/meltdown and needed my lorazepam to calm me down. I think I was just getting a bit overwhelmed and anxious about the test results and diagnosis and 'time traveling' as they call it in DBT. The other patients on the ward where really amazing. Two came to me and gave me their contact details to stay in touch and helped me to calm down and telling me it was good and okay to get upset.
I'm hoping when the nursing assistant is free the take a little walk up an down the corridor as so far all i've down is go from my bed to the bathroom and back and my legs have been in a bit of spasm and weakness and pins and needles so I hope a little walk and stretch of my legs will help.
(Written Friday 15th0
Around lunchtime (5pm) my myoclonic spasms started, they eased and I was able to have my tea. I then just rested and watched TV Around 7.30pm I started getting more violent spasms in my arm and the nursing assistant put blankets rolled up around my arm as my shoulder kept dislocating/subluxing. Thing then spiralled and I stared have full body spams and I wasn't;t able to verbally communicate. I was in agony and at one point I'd had enough of life and seizures apparently. My favourite nurse was one and was great comforting me and getting me comfortable getting me comfortable in bed. The on call Dr came (same one as before) but he didn't want to give me any medication for me seizures and spasms. By this point it was gone midnight. One my lovely nurse and a nursing assistant got me comfortable and settled in bed I just put on a film and nodded of eventually exhausted for all the hours spasming and my body going into full spam.