- Monday 10th December - Got up and did my usual morning routine. My carer then came and there was a slight mix-up with the thing of my hair appointment so we went to the Post Office to post my Christmas presents; we then went to Tesco for a coffee and to pick up some more antihistamines and the we headed to the hairdressers. It's the Graduate Salon at the local college where students get experience. I had a condition hair mask treatment and then she curled and braided me hair. I then can home pretty tired. The rest of the day was spent stitching squares to the blanket which I'm making good progress with.
- Tuesday 11th December - Up a bit earlier than usual as I had the Wellbeing Team coming round at 11am. When they left I put on some make-up and made a video for my YouTube channel talking about some of the aids and adaptations I use. I then did some crocheting and at 3.30pm I had another home visit from my support workers from L&H Homes. I was tired after they left but I needed to crack on with my crochet but I took a break and some time out to rest. I added the closed captions to my YouTube video. Went to bed later than usual so I was in 'zombie with a head full of cotton wool' mode by the time I was in bed.
- Wednesday 12th December - Didn't write this on the day so my memory of the day is a little vague. I didn't have Bluebird today so I had a nice lay in and my day probably existed of pacing, resting and crocheting.
- Thursday 13th December - Up early to get to London. Patient transport was meant to pick me up at 9 but they was late; then we got stuck in standstill traffic on the M1 due to an accident that closed 3 out of 4 lanes so the crew member sat in the back with me called control to call the Pain Management Centre to say we was stuck in traffic and to give an updated ETA and got a call back to say that was all fine. Got to London only to be told we couldn't be seen and they'd have to rebook me in which will now be the end of February. The crew called control and what must have happened was that they must have told the clinic how long we would be held up in traffic for as how late we'd be and not out ETA. Migraine brewing we got back in the ambulance and I took some pain relief and migraine meds. On the way home I had a series of seizures, thankfully I travel on a stretcher for long journeys so that made life easier and I was well look after. Despite issues with TASL themselves I've never had a bad member of staff; they've always been amazing, helpful, caring and supportive. The crew member sat in the back with me got me propped up on my side and got me comfortable as my body had gone in floppy mode; gave me my meds and turned the lights off so it was nice and dark and I mostly slept the rest of the way home bar the pitstop at Peterborough services where they nipped in to buy me a diet coke (a new found chronic illness essential). Home I got something to eat and settled in bed with my laptop for a bit. I feel frustrated that I now have to wait until February to get this COPE Pain Management Program started which delays my hypermobility physio program.
- Friday 14th December - Had a lay in to rest and recharge from yesterday's pointless adventure. Spent most of today getting on with my crochet as my aim is to get the squares made and sewn on by the end of the week so I can get the border on and sent of to it's new home to be wrapped up for Christmas. Around 2.30pm I summed up the energy to get a bath and get dressed. Brain fog has been quite bad today so it's been a bit of a blur.
- Saturday 15th December - Struggled get up this morning but I needed to be up as Vicky my hairdresser was coming round this morning at 11.30am to dye my hair. Spent most of the day getting the last few squares made for my blanket and then this evening Mandy, Dad and I watched a film and I sat on the floor (rather uncomfortably) and got a lot of square stitching done before telling myself that I'd done enough and I deserve a rest.
- Sunday 16th December - Set my alarm for 8.30am to go to church and it went off and all was well, next thing my medication alarm box was going off telling me to take my 10am meds - oops! So no church today. But maybe my body was telling me I needed the sleep as I'm still struggling to get off to sleep. Dad decorated the house for Christmas - I normally do the tree but my body wasn't with it today so I sat and got on with my crochet as best I could instead. (I forgot to update the rest of today so can't remember what else happened)
Gratitude list...
- Rosie my carer this week
- Getting out the house
- The Wellbeing Team
- TASL (Patient Transport)
- My Dad
