- Monday 14th May - Bit of a dull day. Didn't get up to much. Just resting and writing a few post crossing postcards. In the evening Dad, Many and I watched a programme together and Mandy braided my hair for me. (I love my hair being braided and played with).
- Tuesday 15th May - Had a bit of a long wait at my appointment so downloaded some programmes from BBC iPlayer onto my iPad to watch. When I got home I had some lovely mail waiting of me so I got a reply written and did some more letters ready to be posted tomorrow.
- Wednesday 16th May - Had my carer come round and had a nice pampering shower and used lots of things collected from my Birchbox's including a nice orangey shower gel and a coffee ground orange oil body scrub and washed my hair and used a hair mask to make my hair all nice and shiny. We then had a bit of spring clean of my bedroom and changed my bedding. Chilled out for the rest of the day. Received some lovely mail and postcards from postCrossing including a postcard from Finland which contained a very awesome Little My (my favourite Moomin character) stamp - Royal Mail only do boring international stamps most of the time. Bed time was lovely with fresh bedding and clean pj's. I put on my zebra pj's with matching slippers and eye mask for EDS/HSD Awareness Month.
- Thursday 17th May - High fatigue day so chilled in bed watching more episodes of Chicago Med.
- Friday 18th May - Was meant to have woken up at 8am ready incase wheelchair services came at 8.30am, and guess what happened... I fell back to sleep and got woken by the doorbell just after 8.30am! The man adjusted the footplates to my specification and left me to it. I then chilled for the rest of the day waiting for the collection of my old wheelchair. Had an early night as was feeling quite tired and sat up in bed for a little bit playing games on my iPad listening the Stephen Fry read my Harry Potter and the Goblet of Fire until sleep came.
- Saturday 19th May - Had a long sleep in. Set my alarm for 10 am to give me around 12 hrs sleep (I've been aiming for around 10) but I fell back to sleep and didn't wake up unduly around 11.35am so I must have needed to sleep! I got up and had some brunch and watched TV and watched some of the Royal Wedding and when I felt more awake I got dressed. Dad then came back home and we got real to go out as there was a local vegan festival on that I wanted to check out so we headed out the house once we was ready. I had a look at a few of the stalls and there was live music playing. The venue was a newly discovered vegan cafe (that I'd defiantly go back to) Dad had a coffee and a slice of cake and I had an oat milk latte and a vegan ice-cream lolly. We then had a look at a few of the other stalls and I bought myself some eye glitter and some hair treatment. We then headed back home and I chilled out for the rest of the day. In the evening Dad and I sat and watched the highlights of the Royal Wedding and then I headed up to bed to try and catch my 10 hrs of sleep.
- Sunday 20th May - Got up and got myself ready to go out to church. Was a bit tired when I got back so chilled out on the sofa then decided to set myself up in the sunroom where it was lovely and sunny and catch up on a few letters as my inbox is stacking up a fair bit. After tea I had another rest on the sofa as I was feeling a bit brain fogged after all that letter writing. I did hope to get some distance learning work done but that went out the window. Once I'd had a rest an my tea had settled I put on the hair treatment that I bought yesterday and had a bath and then Dad washed my hair. I spent the rest of the evening curled up on the sofa of the sunroom watching TV before retiring to bed.
My gratitude list list for this week is:
- Mandy braiding my hair
- My pen pals and PostCrossing
- My carers
- Chicago Med
- My new weelchair
- Lay-ins
- Dad being free to take me out and spending time with him
- Church and my faith
- Dad washing my hair
