So I woke up feeling seizure-ish which continued but I just tried to carry on as normal and not let FND stop me. My carer came at 11.45am and I had a few things to pick up from Tesco so we got ready to leave the house. Despite not feeling 100% I was determined to just get on with my day. Unfortunately nearing our end of the Tesco shop my myoclonic seizures was getting worse and my carer was getting a bit concerned. I then just said "I need to get out of my wheelchair" so my carer swiftly got me on the floor and used my seat cushion to put my head on.
The seizures continued for about 25 minutes until my carer and the Tesco first aider decided it was time for an ambulance, especially as my tonic-clonic seizures where increasing nano getting more violent. Apparently Tesco was amazing. They blocked off the aisle and at each end of the aisle had someone stood their to ensure no-one was going to be nosey to give me my dignity and they grabbed towels to cushion me. My carer was also amazing in dealing with my seizures and later asked me if she did the right thing which I told her she couldn't;t have don't any better.
When the ambulance crew arrived they knew me from the past and dismissed my Professor's care plan and apparently didn't t treat me the best way and was a bit rude to my carer. They was only and EMT crew so couldn't give me the IV Diazepam my care plan states I needed to be given and when shown my care plan from my consultant barely looked at it. Apparently thought they know best and that I'd just 'snap out of it'. It seems daft that they'd send an EMT crew to someone in status seizures?! Later on in A&E though the EMT apologised to my carer as he realised that this episode was a bad one and didn't go about it the best way about it initially.
In A&E I was taken into resus and given IV Diazepam, cyclizine, and various pain relief meds. My carer arrived at A&E to stay with me with I was very thankful for and they was very busy in A&E so she did some care tasks and she filled me in with the missing gaps from when I'd been unconscious like how rude the EMT crew had been to me and her and how amazing Tesco had been and how the Tesco first aider also wasn't t happy with how the EMT crew treated me. I knew things must have been bad coming round in resus and thankfully the Dr looking after me actually followed my Professor's care plan and gave me the Diazepam I desperately needed. After the cyclizine and pain relief I was still in a bit of pain but desperate to get home where I'd be more comfortable and could rest and I always feel a burden on A&E when they're busy but my carer just kept reminding me that I needed to be there as I'd had a really bad seizure.
A&A was absolutely jam packed with people and patients and they was struggling for staff but in resus they got my meds to me eventually without a too long wait and the nurse was understanding of my pain especially how my hypermobility is affected during my seizures.
I absolutely hate having seizures in public as feel I feel so self-conscious and I get anxious leaving the house in case I do have a seizure or fall ill. Most of the time I'm at home due to my FND and M.E. and only really go out when I have someone with me that knows how to deal with my seizures so I am pretty limited but I try not to let it hold me back and try to keep life as normal as possible.
When we got home my carer made me something to eat and filled up my tumbler with juice and made me a coffee and ensured the fan was in the front room and I had my meds and phone on me.
I'm now resting, keeping topped up with pain relief and hoping I'll be up to going to London tomorrow for my gastroenterology appointment.
I also missed my delivery which I'm guessing was my new headphones which I'm pretty gutted about but I've rearranged it for Saturday and thankfully I didn't miss my pharmacy delivery. I also got some PostCrossing mail which included a lovely picture from one of the PostCrosser's daughter.
For now I'm just going to rest up and later get myself ready for tomorrow.
Thursday, 26 July 2018
Guest poem by published poet Emily in commemorationof the centenary year of the Suffragettes who finally succeeded in their mission to get...
I'm writing this post and I'm not quite sure where or how to start. As I type I am crying and filled with anger. Today I lost a fr...
14th May 2018 marks the start of mental health awareness week, a week dedicated to raising awareness of a very un-talked about, hidden awa...