The appointment itself was the usual wishy-washy care I've come to accept from local the local pain clinic which is contracted out to a private company, but its an NHS provided service. We just filled out a bunch of pain score questionnaires today. The problem I find with the pain clinic is that they're not targeted enough and they're too broad spectrum they just deal with paint don't quite seem to get chronic pain which is where I find the questionnaires a pretty pointless exercise.plus appointments are only half-hour slots so you don't don't really get the chance to get down into the nitty-gritty parts of dealing with your pain as by the time you've arrived and settled in and filled them in on things you hardly get started on the pain management teaching skills.
I've asked my rheumatologist Dr Kazkaz if she can recommend a pain management clinic that I can attend until I'm well enough for the programme at Stanmore and I'm going to ask my neurologist professor Edward the same. I just feel that there's something better out there more suited of me and my needs and speciality.
Anyway, thankfully I was only waiting about 45 minutes for TASL to take me home which is a record for them. Maybe my complaint to them helped, or maybe it was my explanation on the phone that I have prolific seizures and suffer from incontinance that promted them to get me home ASAP? Anyway, it beats the 4 hour wait I've had in the past. Another positive is that one of my favourite crew members R was also there to take me home. Back to why I TASL is so essential for me - on the way home I felt my seizures coming on; my aura started any so did my myoclonic seizures. I managed to asked them to pull over and my favourite R who was driving hoped out and got me off the seat and onto the stretcher. I have a double crew - one person to drive and another to sit with me in the back incase anything should happen. Once I was on the stretcher my seizures worsened and I had a few Tonic-Clonic seizures. Both crew members stayed with me; trying to keep me conscious and bring me round. R had hold of my hand and kept getting me to squeeze it to check I was still with him. He knew from my tales of A&E and from previous treks with him to A&E how much I loath the place. After a while the decision was made that R would stay with me on the stretcher and the other crew member would drive home. I just prayed that that we wouldn't;t divert to A&E, especially after last time. When we got back to my house I was still having seizures and we spent a while just in the back of the ambulance trying to work out what to do. Thankfully Mandy my step-mum was home. We decide that I should take some of my oral diazepam and then we had the issue of how to get me off the stretcher and into the house. R decided to scoop me up and carry me in, why they didn't opt for using the stretcher is anyone's guess. But we got inside okay (and this wasn't;t the first time R has had to scoop me up and carry me). Even in the house the crew stayed with me for a while; still trying to keep me conscious. After a while my seizures started to ease off so Mandy said that she could take over and keep and eye on me. I was exhausted by this point as it'd been about half an hour of seizure activity so I just laid on the sofa; Mandy and put my heat pad on me and put some blankets over me and I put and audiobook on and read a couple of letters that the postman had delivered that day.
Sadly R is leavign TASL for another job so I won't be seeing him anymore which I feel sad about, but he said that he'd miss some of him regular patients like me (despite the trouble I cause him!).
Today I am filled with gratitude for:
- My TASL crew, esp R for looking after me and going about and beyond their role and staying with me for longer than just the job in hand
- Letters from my pen friends
- Medication which helps ease my seizures, pain and other symptoms
- Having family who look after me and help me out from Mandy dealing with my seizures to Dad washing my hair for me this evening
- Being able to contact my specialists in London
- Having a home where I can rest, recharge and relax