Monday 20th May
Had my Monday Bluebird visit. My carer's just been on holiday so we laughed at how pale my skin was compared to her tanned arm.
I got carried away on my laptop and forgot my meds review appointment at 3pm, though my care co did feel at fault for not reminding me, plus I'd forgotten to set my usual reminder alarms. Hopefully I won't be waiting too long for a new appointment.
Dad's away this week on a school residential trip.
This evening my step-mum and I wanted a film 'Invasion of the Body Snatchers'.
Tuesday 21st May
Mix-up with Bluebird - I was meant to have my usual ½ hr call but there was some sort of error with he rota so it's been moved to tomorrow.
This afternoon I had an acupuncture session at Orchard Barn.
The rest of the day was spent just resting on the sofa.
Wednesday 22nd May
Had a ½ hour call with Bluebird. My carer brought me an early birthday present which was an indoor flower plant in a flamingo shaped pot which I love. This brings my plant collection to 14!
I did my makeup and my friend called me for a quick chat.
It was then time to leave the house to get myself to the GP practise. I meant my advocate there as it's my new GP and I just wanted her support.
My new GP seems okay; better than my old GP. He was honest with me which I like and he wasn't dismissive and he seemed clued up and explained things well and he seemed friendly and supportive and he's going to keep in regular touch with me which my old GP never did and even though local support services don't exist which we both agreed upon and how I sort of fall between the gaps as I'm not end-of-life but I'm not temporarily ill and then there's noting for the illness that I have, but he's going to have a think and a search to see if there is anything for me.
After my advocate and I had a chat about what I want her to say on my behalf at the professionals only meeting the Complex Care Team is having about me. (Not really following person-centred care by not inviting me along.)
I'm now just resting watching TV and doing some colouring.
This evening my step-mum and I went to a friend of Dad and my step-mum's from church to watch a film as we didn't;t have a blue-ray player.
I'm now exhausted and ready for bed.
Thursday 23rd May
Had Bluebird this afternoon. First off was an ECG with the nurse at the GP practice and then home. I tried out a new facemark which I got in my Birchbox a few months back. We had a giggle at how I looked but my skin felt lovely. It was nice to have a little DIY facial.
I had a prolonged seizure and my carer ended up having to call out the paramedics. I managed to avoid a trip to hospital. My Uncle came over and sat with me for a few hours and then he left me to sleep on the sofa.
My body is still in a lot of pain, especially my hip. I hurt my hip at the weekend during a fall (queue another paramedic crew) and the seizures just flared that up.
Dad's been away this week on a school residential holiday (he's a teacher) he called me at bedtime and it was nice to talk to him and be honest with how I'm feeling and how I'm struggling.
To be honest my mood has been really low this evening and I ended up calling the crisis team. I'm just hoping my mind can switch off so I can get some sleep.
Friday 24th May
My hip is still painful today. So far I've spent a bit of time on my laptop and done some college work and I washed my face and used some of my things out of my Birchbox's. I'm trying to get into the habit of asking my face each day.
I've also spoken to my care co-ordinator and my advocate as there was a 'professionals only' meeting about me today wit the Complex Care Team (bit miffed I wasn't invited).
I'm now just taking a break from college work to do some mail.
Just about to head to bed. I've spent today going between college work and letter writing as well as resting. I've hardly watched any TV, and I saved some energy to tidy my room (though I still have a pile of laundry to put away). It feeling a productive day despite the pain, but to be honest it's been a good distraction.
Saturday 25th May
Not much of an interesting day. Flop got cleaned out and he had a good munch on the grass. I'm really into audiobooks at the moment and it's nice to plug my headphones in and close my eyes and zone out. I also wrote some PostCrossing postcards.
My step-mum was working this evening so it was just Dad and I so we watched a film, well, we got halfway through and hen at 9pm we started to get tired so I got myself up to bed.
Sunday 26th May
Having a bad M.E. day though not sure what's brought it on.
To get some darkness I went and laid on my bed and had a deep rest. I put my headphones and an eye mask on and listed to a book for quite some time. I then thought after several hours that I'd try and make my way downstairs and onto the sofa, but 5 minutes into my programme Dad and my step-mum wanted the TV. I tried laying on the sunroom floor (I could't handle being upright for too long) plus it was too bright so I went to lay on the sofa (well, it's a sofa bed and its been converted into a sort of second lounge come laundry room) in the back bedroom. I was going to watch Chicago Med but when I put the TV on the first Harry Potter film was one so I dozed and watched that.
I've spent the rest of the evening watching TV apart from eating. I came to bed and listened to a new audiobook. I keep meaning to find some new podcasts.
- Monday: photograph of my pale arm next to my carer's tanned arm
- Tuesday: opening up a section of my alarmed pill box
- Wednesday: view of my GP practise waiting area. A large atrium area.
- Thursday: Colouring in a postcard picture of a cats with a dark brown pen.
- Friday: Spooning coffee into a pink cup
- Saturday: View of the garden from where I was sat and Flop on the lawn munching grass.
- Sunday: Turning on my headphones and lights coming on.