Monday 16th September
Had my carer this afternoon and it was much needed. I had a lovely shower and hair wash and went all out with a hair mask, body scrub, face mask etc. It made me feel so much better not just physically but mentally too.I then had a quick break to eat my lunch before my physio arrived. Unfortunately during my physio session I had a seizure but my physio felt with is great and after she helped me to the sofa. She offered to stay with me but I said I was okay and I just wanted to sleep and I had my CareLink if I needed help.
That's one of the good things about home physio as if I'd been at the hospital I would have been taken round to A&E and pointlessly spent hours in there.
Tuesday 17th September
Had my assessment with my social worker today and it went really well so fingers crossed I will be getting some hours for care and going to some social groups. I don't want to get my hopes up but my advocate was sure I'd get it so it's just a case of waiting now. If I do get care I can start looking at getting my own little flat or bungalow ☺️
After the meeting my mum showed me how to use the embossing/die cutting machine she's given to me which is quite exciting for my letter writing.
Unfortunately I had a seizure (looking back after the meeting I should have gone and had a sleep, plus with the time of the meeting it messed up my routine with regards to medication and eating).
As my mum has never dealt with a seizure before she didn't know what to do, plus I'd banged my head, so she pressed my CareLink who sent an ambulance. Because the paramedics had to give me diazepam I had to go to A&E. Mum met me there and stayed with me.
I'm home now but feeling sore as my head hurts and my left hip joint it twisted but the Dr said that because of my hypermobility it should sort itself out.
I can't fault the paramedics. They gave me the meds I needed which meant I wasn't waiting for hours in A&E for them and as when we got to A&E because they where so busy 2 female paramedics (who where different to the crew that came to me) got me onto a clean sheet and into a clean continence pad and cleaned me up and put me into a hospital gown.
I'm not tucked up in bed, I've had some jelly and ice-cream and I'm hoping my pain relief settles soon so I can get some sleep.
Wednesday 18th September
I'm glad my appointment was cancelled today. Still in a bit of pain so today I've just taken it easy.
I spent some time making die cut shapes with my new machine and browsing on Amazon.
Thursday 19th September
Struggled to get up this morning but managed it and just chilled in my pj's before getting dressed. Just as I was about to do my makeup my carer came. Because over the summer I'd changed my visits and this week I'd gone back to my normal visits I've been thrown with the change in routine this week and at points I've found it hard to settle back in.
Thankfully I wasn't mid makeup so I just put on some moisturiser and ensured I had everything in my handbag and put my shoes on whist my carer put my wheelchair in the car.
I have rarely left the house in months except for medical appointments so I thought today I'd go for a drive out to Louth. Eventually we found somewhere to park and we went and had a coffee. One of the good things about having my wheelchair is that we don't have to find parking right outside the shops, unfortunately Louth's pavement's are a bit haphazard when you're in a wheelchair. After we'd finished our drinks we went to WHSmiths as we don't have one locally and I bought a few bits. It was then time to head home.
I was tired but I had just enough time to eat a snack bar and then I went and had my appointment with my autism support worker. Today we put together a 'hospital passport' - this is a little document that I can give to hospital staff to communicate my needs, such as how I communicate, what my care needs are such a low stimuli environment and what I do when I'm in pain and best to support me.
Home and to a much needed nap. It was just Dad and I so we watched a TV programme together and then I had an early night but I struggled to get off to sleep for a while due to pain.
Friday 20th September
I look forward to Friday's as I don't normally have appointments as I need to wait in for the pharmacy so its the start to having a few days off.
I spent a while looking on Amazon and I've bought some die cutting and embossing supplies of my own.
I'm a bit behind with letters as I just haven't had the energy to reply so I sent messages to all my pen pals I need to write to and they where all really understanding.
Saturday 21st September
Today I had a nice lay in and I swapped between watching TV and letter writing as well as napping. Still in a bit of pain today and hoping I sleep better tonight.
Sunday 22nd September
Wasn't feeling great this morning. Woke up just feel 'blergh'. Still decided to go to my mum's and Fred (her husband's) house.
Even though I still wasn't feeling great and and my POTS was playing up and I had a fall (I passed out) I had a really nice afternoon.
We had dinner (main meal) and then mum and I sat (well I had to lay due to feeling dizzy) and we had a browse for craft stuff.
Mum and I then retreated to the craft room (heaven in a room!), well, half craft room and have music production room for Fred. Mum showed me how to make two types of cards. We spent ages crafting and it helped take my mind off things.
As I'd stayed so late we had tea together (evening meal). I was getting tired so we finished off what we was working on and then we headed home.
Even though I still wasn't feeling great and and my POTS was playing up and I had a fall (I passed out) I had a really nice afternoon.
We had dinner (main meal) and then mum and I sat (well I had to lay due to feeling dizzy) and we had a browse for craft stuff.
Mum and I then retreated to the craft room (heaven in a room!), well, half craft room and have music production room for Fred. Mum showed me how to make two types of cards. We spent ages crafting and it helped take my mind off things.
As I'd stayed so late we had tea together (evening meal). I was getting tired so we finished off what we was working on and then we headed home.
Video Description
- Monday: Pouring coke into a glass and it frothing and fizzing up
- Tuesday: My pillow vibrator and beeping alarm clock going off
- Wednesday: Time lapse video of me dropping a dissolvable tablet into a cup
- Thursday: Sticking down a return address sticker on a holographic envelope
- Friday: Adding a sprinkle of herb mix into Flop's bowl
- Saturday: Zipping open a clear plastic pouch
- Sunday: My hands applying glue to a piece of paper
