Monday 28th January
Went out to run a few errands with my carer at 12pm. Then at 3.30pm I had a quick appointment with orthotics to get my new knee brace fitted.Whilst waiting for patient transport to take me home I started having a seizure with no warning. Thankfully I buckle myself into my wheelchair (and I was in my wheelchair) so I didn't go anywhere.
Came round in A&E. Thankfully this time I got really good care, the nurse looking after me was lovely. He followed my care plan and got a cannula in me and some diazepam which calmed my seizures down but I was still twitching and also some cyclizine as I was being sick. He also got me comfortable and propped and bolstered me up with blankets as my shoulder kept popping. I also had some bloods taken and some of my results were a bit off (phosphate, lactate, blood glucose and potassium) so I had a bag of IV fluids with these in to bring my levels back in to the normal range. I had my obs checked. I mostly slept in A&E. The IV fluids did the trick. The Dr came and saw me again and said that to admit me it would be a 10+ hour wait for a bed and with my low immunity she didn't;t want to risk catching an infection and even though my seizures have been worse I'd probably get better care at home and I have the meds I need at home too so I was discharged. I was having speech difficulties again so my nurse was trying to call Dad and Mandy for me (be just got voicemail) but then TASL (patient transport) called to say they was taking me home.
Whilst we was waiting for TASL I was overdue with my 6pm meds and because I was still spasming my nurse helped me to take my meds. I warned him about my dodgy veins when he when to take my cannula out and true to my word it was a bit of a bleeder!
It probably broke all of the moving and handling policy rules but to get me off the hospital trolly and into my wheelchair my nurse scooped me up and put me into my wheelchair!
When I got home it was just in time for tea then off to bed with Dad now checking in on me.
Tuesday 29th January
Busy day! This morning I had my support workers from the Wellbeing Service come and do a discharge visit as I've had my 8 sessions with them. I get on really well with them and I showed them my crochet blanket and Cat had a cuddle with Flop.I then had a bit of a break and a rest and then at 2pm someone from the Red Cross came to see me for a chat.
It's nice that services like the Wellbeing Team and the Red Cross exist as as well as practical support it offers emotional and social support which is great as the medical teams deal with the physical side of your health but your emotional and social wellbeing care gets forgotten about.
I referred myself to the Wellbeing Team and I was referred to the Red Cross (it's only time limited but my support worker from L&H is looking into a befriender for me as a more long-term solution).
In the evening I had another few tonic-clonic seizures and myoclonic seizures and once again I had speech difficulties. I was too tired to go to bed so I slept on the sofa until bedtime and the Dad helped me up to my bedroom.
Wednesday 30th January
Finally got to speak with someone at Revitalise Sandpipers (they offer repost holidays for people with disabilities). She tried calling me yesterday but it was always when I was in my appointments. I was worried because of my seizures that I wouldn't be able to go but they where absolutely fine with everything so now I just need to work out a few logistics and call them up and book my holiday with them!My carer cam this afternoon and we had quite a productive time and then we went off to the GP practise for to have some bloods taken.
Since coming home I've just watched TV and written some letters.
Thursday 31st January
At 12pm I had my appointment with Dr Sally at Orchard Barn. I seem to be getting in a routine with my supplements and finding what's helping me at the moment. After my appointment I had a hot shells massage which was nice and relaxing but also helped with my pain.I got home and quickly got something to eat and brushed my teeth and headed to meet Dad and Mandy at the Dentists. It was a fairly quick appointment I'm still having issues with pain in my jaw because of my muscle spasms bust also because of my hypermobility. My teeth where perfect and didn't even need a clean. It was a goodbye to my dentist as he's retiring and he's been the only dentist I've ever had since I've had teeth.
When I got home I just rested and watched TV and typed a couple of letters.
I just chilled out and rested for the rest of the day.
Video description
Monday: View of my bed in A&E, (taken half asleep). You can see my flowery rucksack and my flowery doc martens boots and jeans and my wheelchair and a male nurse walking past.Tuesday: Wearing a burgundy hoody and Flop my guinea pig in my arms with me stroking him
Wednesday: Photograph of my GP practice's waiting area which is a light and airy place with turquoise and blue chairs, stone flooring, a big window at the back and two big sky light windows.
Thursday: My one cup (self pouring kettle) dispensing water in a mug with a dinosaur shaped tea infuser
