After about an hour of me having on/out for tonic-clonic seizures with full body myoclonic seizure activity in-between (this is how my status seizures present) the staff decided to call for an ambulance. Whilst we was waiting for the ambulance to arrive I started to come round a little though I was still very confused and in a heck of a lot of pain and was a bit sick. As soon as the ambulance crew arrived I started from the outset that I would not be going to A&E due to how poorly I am "cared" for there.
My blood sugars was a little high for me - double what they normally are and my blood pressure was a bit low and my temperature was up and trying to decide what to do. In the end the paramedics agreed to let me have some Entonox to ease the pain on my dislocated shoulder and subluxed hip. Entonox isn't a magic cure, it helps the pain but it wares off the minute you stop taking it, but for me it can also ease my spasming as although my tonic-clonic seizures was waring off I was still in full body myoclonic seizures but conscious and it did help for a little while but there was no real care plan other than A&E or leave me and present at A&E later if things continue (which would be unlikely as severe as things could have gotten).
Entonox was all the crew could really do and they wasn't a paramedic crew either so they was limited on what they could do other than take me to A&E which I was adamant was not going to happen. I took some of my own oramorph which I carry on me for occasions like this and stayed on the Entonox until it kicked in and the crew filled in the necessary paperwork. Ideally I know I should have gone to A&E but I'm not putting myself through the hell that I usually receive when I'm there. So the crew left and I managed to get home and went strait to bed and curled up and watched some Chicago Med as a distraction and I kept topped up with pain relief.
It's really upsetting how I know A&E will treat me because my main illnesses are 'functional' and at times clinicians don't even believe me to be ill at or or that I'm feigning and refuse to treat me because I have a 'functional' condition.
More education and awareness is needed to understand FND and to see how serious the illness is; that in reality FND can be as severe as MS and Parkinson's*. For me my FND symptoms including my seizures are relentless and very restrictive and at times severe.
Today I've still been in quite a bit of pain but I couldn't have a lay in because I had to be up for my new wheelchair delivery (I've got a more lightweight one now that should be easier to push more independently)FND symptoms are poorly understood and can be debilitating. -Dr. Jon Stone
References:
* FND Hope
Today I am grateful for:
- The care of the staff at the TC
- The paramedics looking after me and listening to me
