Monday 17th June
It's my birthday! 26 today. It brings mixed feelings as you want to be happy because it's a happy day, but equally it's difficult as it's another year gone by which has been dominated by chronic illness and disability and another year where I've felt stuck struggling to access services to give me more independence, another year where I've not been able to work/volunteer or study etc.
Once I was awake I sat in bed and opened my parents from my pen friends.
I had my favourite carer 11am-1pm and it was nice to see her.
Then my friend popped round for a cuppa and a chat.
I was exhausted but I had to get ready for my taxi picking me up to take me to my appointment.
I had an appointment with the Adult Autism Service and I've been officially diagnosed with Autism, but I was kind of expecting it but it does feel positive and hopefully I can transfer my support to them but they're going to have a meeting to discuss my case and for a plan of action but I have asked to be assigned a key worker.
Home and exhausted! I chilled out for a bit then Dad, my step-mum and I sat and I opened my presents from them. I have enough crochet kit to keep me going until I'm 27!
We had tea and then my step-mum got out a Naomi friendly birthday cake which was lovely.
In the evening we played a few rounds of Scattergories.
My brother also left an amusing message for me on Dad's WhatsApp.
Tuesday 18th June
Woke feeling awful; not helped by forgetting to take my night meds (again!) I was in so much pain I knew I needed pain relief right away - normally I try alternatives first. My back felt like on big concrete muscle. Meds didn't full helped so I had to take something a bit stronger. I had an accidental sleep on the sofa, probably because I didn't sleep well due to the pain.
I was contemplating cancelling physio but I gave myself a time scale and at 12pm I got dressed and the stronger pain meds helped.
It was my first time having home physio and it went really well. She was understanding that I was having a bad pain day and we mostly talked and set some goals. It was a lot easier having physio at home; if I'd had to go to the hospital today I would have had to have cancelled which would have messed up transport etc up.
When the physio left I had a lay down and then I had Bluebird.
I was a little miffed as I wasn't informed of the change of time to the call and change of carer and the fact that I had a carer shadowing. I did email the office explaining that I would like to be informed of any changes and it can be quite unsettling for me especially because of my Autism.
Since Bluebird left I've just been laid feeling a bit zonked on the sofa watching TV and drinking tea.
Wednesday 19th June
Had an appointment at 12pm.
Been struggling emotionally today. Bit of a boring afternoon. Called my care co and had a mess around with the GP over one of my medications. If my tray comes Friday without that medication I'll just get my advocate to sort it as it should be my doctor's job; not mine.
Thursday 20th June
Had Bluebird. I wasn't informed of the changes which is happening a bit lately, but still, I had one carer who I know and like and I get on with and a new carer who's showing who braided my hair for me.
I had a few absence seizures such my muscles spasms and speech difficulties flared up.
As my carers came later than what was written on my rota I had to call Orchard Barn to say I was on my way but in the call my speech was still playing up so I asked them to be patient; it was because I had a seizure earlier. Because of that the lady who does my massage wasn't happy to go my massage even though I'd only had a few absence seizures which was disappointing as I find having massage so helpful for my pain. I still had my appointment with Dr Sally.
I got home and was feeling pretty exhausted and brain fogged. I did try to look for plant pots but my brain has been filled with treacle so I gave up. I've spent the evening just watching TV, though I've got an Etsy order to put together so I'm just doing that now before I fall asleep.
Was up early, again! Need to sort my sleep out seriously!
Had a colouring, TV watching, napping on he sofa jeans and a cosy cardi kinda day. Also been saving ideas for blog posts so behind the scenes my blog looks a chaotic mess.
Evening I had quite a long seizure and I came of the chair with a bang. Thankfully my glasses survived.
Feeling sore and tired now so going to get to bed.
Mundane day with not too much to it. Since my seizure yesterday I've had a sore head and a worse-than-usual headache, nausea and dizziness. I'm also still full of cold.
I managed to have a little bath and I put some make-up on to make myself feel brighter.
Friday 21st June
Was up early, again! Need to sort my sleep out seriously!
Had a colouring, TV watching, napping on he sofa jeans and a cosy cardi kinda day. Also been saving ideas for blog posts so behind the scenes my blog looks a chaotic mess.
Evening I had quite a long seizure and I came of the chair with a bang. Thankfully my glasses survived.
Feeling sore and tired now so going to get to bed.
Saturday 22nd June
Mundane day with not too much to it. Since my seizure yesterday I've had a sore head and a worse-than-usual headache, nausea and dizziness. I'm also still full of cold.
I managed to have a little bath and I put some make-up on to make myself feel brighter.
Sunday 23rd June
Managed to go to church today. Rather than go to City Church I've been wanting to go to the church Dad and my step-mum go to as if I become unwell there they are there to look after me.
After church we went to B&Q and I got a pot for one of my plants, a plant for my zebra pot and a mini orchid for the bathroom.
Video Description:
- Monday: Blowing out a candle on a cake
- Tuesday: Pressing a button on the TV remote
- Wednesday: Photograph of my laptop and the letter I'm typing a reply to
- Thursday: Photograph of a fishtail braid in my hair
- Friday: Fastening a button on my cardigan
- Saturday: Popping out a tablet
- Sunday: Video of the bottom of my tumbler and me drinking up the last mouthful
