Monday 25th FebruaryHad my carers 11-1pm. Got something to eat and then met my advocate at 2.30pm. We discussed meeting with the Practise Manager and I gave her an update on things and how i was feeling.
At 3pm I had a CPA/meds review with my MH care-co and Dr.
Went home via the pharmacy.
Rested for the rest of the day as I need as much energy for Thursday.
Tuesday 26th FebruaryGlad I went to the pharmacy yesterday and got them to deliver my meds today and woke up not feeling great and it just wouldn't have been possible to have gone in my ½ hr care call today. Instead my carer and I nipped to the post office (I would have left it to my carer but I need cash out) and then we sorted my meds out as my hands have been in too much spasm, also got something to eat and today's carer makes good coffee.
Not the best day seizure wise. Had one this morning and then another in the car with my carer.
Wednesday 27th FebruaryMy hairdresser came midday to trim my fringe and then my carer came. i was hoping to get my hair braided but instead my body opted to have a prolonged seizure and make acquaintance with a rapid response paramedic. Thankfully he listened to me and my care needs and wishes. Entonox helped calmed my spasms down and I was also pop my joints back in. The paramedic also gave me some of my own diazepam. I was still having bad myoclonic seizures but he didn't want to overload me with a top-up of IV diazepam. My carer stayed as log as she could and she was trying to arrange for another carer to come and take over when my friend Abi came to the door (in the chaos of everything I'd forgotten she was coming). Abi was happy to stay so my carer could leave. As there was very little A&E could/would actually do the paramedic and I decided home would be the best place for me and to call back if I start to get worse again.
Abi was great, she made me a sandwich and a coffee and she was patient with my speech difficulties and we chatted and it was a nice distraction.
In the evening I got my bag and packed lunch ready; put things on charge and downloaded some things to watch on my iPad and then had an early night.
Thursday 28th February
Up very early at 4am to give myself enough time to wake up and get ready, do final bag checks and put on some makeup. Luckily I did asTASL patient transport arrived early (around 5.20 instead of 6/6.15am) just as I was in the middle of doing my makeup so i got in a panicked rush as I'd planned to sit and have a coffee whilst I waited.
I was glad they was early rather than late. We arrived at appointment 1 of the day in plenty of time and then Dr Kazkaz was running over an hour late.
It was a short appointment. Not much to actively do except see the specialists that I'm seeing for the complications of my hypermobility connective tissue issues (gastro, urology, orthotics, physio etc). She was please that I was taking on all the right advice to manage my POTS and subluxtions/dislocations and she's going to reiterate to my GP that self-management for subluxtions/dislocations is what I should be doing and that there's no need to present to A&E every time (which would be ridiculous) to "prove" that my joints sublux/dislocate. For now it's a case of attend the COPE Pain Management Programme and then the hypermobility exercise program and wait to go to Leeds to get my FND and M.E. more stable to in the future I can hopefully to the inpatient rehab programme at Stanmore (as Stanmore isn't an acute hospital they're not equipped for my seizures even though Professor Edwards says it's not a problem) but hey, we have a plan.
The TASL crew then picked me up and we detoured to the canteen for coffee and I got some soup and then we drove to Cleveland Street. I had a rest on the stretcher and had my soup; I also had a migraine brewing - tiredness and travelling being two big triggers so I took some pain relief and anti-sickness as as well as feeling sick from the brewing migraine I'd eaten too much.
My brain decided to have a little seizure - probably brought on by tiredness and pain and my blood pressure lowered and my pulse increase so maybe it was an autonomic seizure? (I'm still trying to work these out) Thankfully we had enough time before the second appointment to have a lay down.
Second appointment was more a group info session looking as what pain is, how pain affects our lives, the pain cycle and information on the pain management programme so we can make an informed decision about whether to go ahead or not. I'm going to give it a shot; I've noting to lose apart from all the travelling. The next step is to have a 1:1 session to assess my suitability for the programme, ask questions and for them to decide if I'd go the program individually or as a group etc.
Home with a pitstop at Peterborough services for the loo and a cup of tea (I felt in a tea mood); the TASL crew also got a KFC and we sat for a bit and then my brain decided to have a few more seizures. The crew was great we went back to the ambulance and they helped get me comfortable as I'd going into rigid spasm and they helped me get some pain relief and held the cup for me and then they help my cup of tea so I could drink (paper straws vs plastic straws people (!); the straw ban annoyance and how it makes life difficult for people like myself who need decent plastic bendy straws for drinking out of necessity). I'm so glad I got a cup tea as tea makes everything better. Once I was settled we headed back home.
Travelling today I've found a new onset on Amazon Prime that I like called New Amsterdam which is a medical drama (not like I need more of that in my life!) which I'd defiantly recommend.
Home, sorted a few bits out and then straight to bed.