- Monday 17th December - Woke up-okay-ish but it took me a while to get out of bed and downstairs and into 'day mode'. I spent a while in my pj's working on my crochet blanket. Today I've managed to get the first cream border and the black border done; I now just have the final cream border to do and then the check each square for loose threads and the weave in the end threads. I had a fall today (not sure what caused it - faint/seizure/leg numbness/knee dislocation) and couldn't;t get up so the Rapid Response team came round and then my support workers from L&H Homes came round briefly. They're going to look into getting me an advocate and also the idea of getting a befriender. I'm now exhausted so I'm going to head off to bed.
- Tuesday 18th December - I stayed in my pj's until about 2.30pm and I've just spent the day crocheting and it now completed - yay!!! Now all I need to do is weave in the loose ends and search and any imperfections so I've laid the blanket out on the living room floor (and the blanket is bigger than me!) and tomorrow I'm going to search square-by-square. This evening Dad and Mandy went to a concert so that when I finished my crochet and I decided to take a break. I was going to watch a film that I recorded but it didn't; record the whole film so I watched '50 Greated Harry Potter Moments' instead and then an episode of 'Time Team' and an episode of 'Extreme Cake Makers' before heading to bed. I'm going to wait up until Dad and Mandy are home as they won't be home super late and I'm not keen on sleeping on my own in the house at nighttime if I can avoid it so I've done some tidying in my room as I want to get it a nice place to be in especially as I'm spending more time in bed which ironically means more mess in my bedroom as I'm in there more and don't have the energy to put things away as after using things I'm too tired after so I just get mini piles of stuff but I've cleared one pile, the end of my bed and my bedside table and now I'm exhausted and ready to settle down with some episodes of 'Bones' until Dad and Mandy got home.
- Wednesday 19th December - I woke up with a really bad headache/migraine so I woke up sorted my meds out and took some PRN meds and then went and got some breakfast and then I came back upstairs to bed. I put on an audiobook but I fell asleep and it sounded a good story so I'll have find out where I was at before I nodded off. I'm back awake again and the sumatriptan (migraine prevention med), cyclizine (anti sickness) and pain relief have helped so I'm going to do some letter writing as I've got a huge stack piled up as all my energy has been going into this blanket and I'm also going to get dressed as Dennis from Bluebird is coming around at 2pm. As well as starting on replying to some letters my plan is also to do the final finishings on my blanket.
- Thursday 20th December - Got up and ready. Had an appointment with Dr Sally followed by a massage. I refilled up on my supplements and the lady who did my massage recommended I try to hot lava shells massage as there's more heat in them than the stones which might help me more. Dad picked me up and we went home. I was in quite a bit of pain this evening so I just rested and distracted myself with my crochet.
- Friday 21st December - Went to the hospital to see my friend Nichola to give her her Christmas present and have a coffee. I only meant to stay a short while but we ended up talking for ages. Nichola loved the mug I painted for her and she got me a super cosy blanket scarf and some gloves. When I got home I was shattered so I had a nap. I spent the rest of the evening touching up my blanket.
- Saturday 22nd December - Woke up a bit earlier than usual but the morning was still slow going. This afternoon I spent a few hours at Alex and Pete's house from church as it was our groups Christmas get-together. I was contemplating giving it a miss as I was tired as I hardly slept last night and didn't manage to get off until the early hours but I took some precautionary diazepam with I very very very rarely do but I was feeling a bit off-ish and I didn't want to have a seizure so I thought I take some just in case and I'd already prepared my veg sticks and dips to take with me and I haven't been to church for a while and when I am at church it's hard to have a chat so it was nice to see everyone though it was very sensory overload. I was shattered when I got home so I went for a nap for a couple of hours. One of the crew members taking me tomorrow called so I feel reassured that I'm not going to be let down at the last minute by TASL. They're picking me up at 7am so I've set my alarm for 5am and I've set 2 back-up alarms to ensure I wake up! I've made my pack-up, packed what I can, got things on charge and now I'm going to get off to bed and hope I have a better night than last night but at least I can sleep on the stretcher in the morning.
- Sunday 23rd December - Early start to the day; set my alarm for 5am ready for patient transport to pick me up at 7am. Didn't get much sleep on the way there. This was a new clinic with a new Dr today but the lady I saw was lovely and she praised me for doing so well and still smiling despite all life and my disabilities/chronic illnesses have thrown at me. Slept most of the way home and thankfully I had no major seizures like the last few times I've travelled to London. It was a different company today that took me; one that TASL contract out. I was home an absolutely shattered so I just got something to eat, chilled out and had an early night. Richard also came round this evening to pick up the blanket which he really liked so hopefully on Christmas Day Kate will love it too!
Gratitude List:
- Friends
- Patient transport
- Being under the care of UCLH and having lovely Drs there
- Being well enough to see Nichola and go to the church group Christmas get-together
- Getting my blanket finished (though now I feel lost with what t do with all my time!)
- My care agency
