Yesterday was my first trip to A&E of the year. I didn't even make it a week and unfortunately I know it will be the first of many this year.
I was at my friends house having a lovely time chatting and watching to TV. Then my myoclonic seizures started (involuntary jerking spasms in my right arm) and my seizure aura started up. The next thing I was aware of was vaguely being lifted onto a chair, the cold air of being outdoors and then being taken into the back of an ambulance. I was still pretty out of it but I could hear that they had put on the blue lights and sirens which always worries me as I know things aren't good when we go whizzing down the roads. I was the taken straight into resus, again, another worry that I'm not my usual post seizure unwell. I was seen to by a nurse who did the usual check my obs, take blood, put fluids up and apparently my blood pressure was low. I was scared but still out of it a bit, then I felt my friends hand in mind which reassured me a lot.
Once I was stable I was moved to a high observation cubicle. My friend stayed with me which I am so very grateful for. Se kept me company as I fought through the pain. For me with my joint hypermobility seizure equal dislocated joints and subsequent pain and nausea as a result.
Unfortunately I don't get the best care in A&E. I think this is partly because the don't specialise in my illnesses and they don't have the time to sit and listen to me to understand what my needs are and to formulate and appropriate care plan as a result of my complexities. They don't understand how much pain I am in after a status seizure episode as most people don't dislocate joints during a seizure; that I can't sit myself up without assistance or can get myself easily to the bathroom etc.
Finally the Dr came and he spent barely 5 minutes with me. He unnecessarily listened to my chest, poked my shoulder a bit, negotiated meds (though when the nurse brought them to me he had gone back on his word which utterly annoyed me as I knew what he had prescribed me wasn't enough to touch the pain I was in) so I then waited to see another Dr who reluctantly gave me some oramorph seems I had non at home due to a computer error with my Drs surgery and with that prescription came the irritating pep talk about how young I am and how I need to get myself doing something so my life isn't filled with illness and how there's jobs I can do even with daily seizures and how he overcame his adversities.
Hopefully though I will be getting an A&E and ambulance care plan. The ambulance care plan so the paramedics can patch me up with the necessary meds like diazapam, pain relief and anti sickness (my usual post-seizure meds) and hopefully avoid the mandatory trip to A&E that has to be followed after administering these meds to avoid A&E which I don't really need and so I can recover and rest at home which is much better for me than sat in A&E in pain for hours. And an A&E care plan to get some consistency and understanding of my illnesses and needs and each time I end up there I get different options, different treatment, different medications, different care, different everything. Thankfully my care agency has a nurse who is doing some brilliant advocacy work for me so I have her on my side trying to improve tings for me.
Thankfully I'm home now, though rather bruised from all my needle sites and a ballooned hand thanks to a failed cannulation (the joys of faulty collagen).
Lets just hope I get this A&E and ambulance care plan put together ASAP and my next visit to A&E will a) be better and b) won't be in the near future.
