So things have been a bit quite on my blog lately. Since visiting The Deep I've not been well with PEM (Post Exertion Malaise) and some sort of virus as I've had a nasty cough and temperature and felt what spoonie's call "normal person sick".
Then today on my way back home in Patient Transport I went into a prolonged seizure and ended up in my least favourite place - A&E and received the usual lack of "care".
There are two sorts of illnesses according to the lead consultant - organic and functional; as my two main illnesses (which to him like my GP aren't "actual" illness) FND and M.E. are functional illness three is no treatment so it's just a case of "putting up with them" as the consultant put it. He seemed vary un-understaning and unwilling to help me in ay way which just upsets and funstrats me. Especially when nurses have the attitude that I'm feigning or just playing up. All i can really do is try my hardest to avoid A&E and email my neurologist again and copy in my care agency's nurse to keep her in the loop in the hope that we get some sort of care plan put together. I'm also going t chase up PALS (Patients Advise and Liaison Service) as I haven't heard anything back from my last complaint about my previous "care" in A&E.
What I really don't understand is last year I used to get some good care in A&E at times and get medications to bring me out of my seizures and now that's all ceased to nothing bar a oral diazepam tablet put into my semi-conscious mouth and maybe some oral paracetamol for the pain.
I also got some not-so-good news today about my video telemetry test which is going to be even further away than originally thought due to long waiting lists and shortages of staff and beds so rather than it possibly happening April/May time its looking like June at the very earliest, possibly even longer (I've been eating since last July for his test). We're really needing this test to happen to rule out/in epilepsy as a contributor to my seizures and also so a proper care plan can be put in place. I'm also still waiting for funding to be approved for my neuro/functional medicine rehab placement in Leeds so I have it on my to-do list to find out the contact to see where we are with that as once that's been approved I can go on the waiting list for a bed.
Tomorrow will be a day off resting and trying to locate my glasses which went missing somewhere in the ambulance yesterday and they're my best glasses as they're my Cath Kidston grey tinted lenses ones that I use when I'm struggling with light sensitivity and I curently only own one pair of grey tinted lenses, but I'm at the opticians on Wednesday so I'm going to get a second pair as I've found the tint really helpful and they don't look as bad in public compared to my purple Irlens lenses.
Right, I'm going to finish there as I'm getting tired and nodding off as I type.
