- Monday 23rd July - Difficult start to the day as it was my first day back at group therapy after my week off. It went okay; nothing special. I was shattered when I got back home so I just chilled out for the rest of the evening.
- Tuesday 24th July - Not the best of days. Feel like everything is weighing me down and I'm feeling quite low, and I know it's part my fault for letting people get to me and for personalising almost everything. I'd been in two minds about treating myself to some new Beats headphone and had been in great deliberation with myself but when my only pair of wireless earphones decided to stop working properly I decided to just go for it and buy them.
- Wednesday 25th July - Dad and Mandy went away and Mandy only told me this morning so I had to make a hurried call to see if I can get any carers to pop in and as usual Bluebird was amazing an arranged extra carers for me. Most of the day, because I was home alone I spent on the sofa where I was safe. I had the same carer in the morning and evening. I mostly just watched TV and listened to music and did some online puzzles like link-a-pic and word searches and colour sudoko to break up the monotony of watching TV.
- Thursday 26th July - Woke up not feeling 100% and a bit seizure-ish but I was determined not to let FND win so I carried on with my morning. I had a few bits to pick up from Tesco so when my carer came I insisted that we went. Wrong move. I went into a prolonged seizure in Tesco and eventually and ambulance was called and I was taken to A&E resus. There they gave me meds for my seizures, anti-sickness and pain relief and thankfully my carer stayed with me. When I felt better, (though still in pain) I asked if I could go home. When we got home my carer made me up a tumbler of juice, a coffee and something to eat and ensure I had my meds and phone on me and left me on the sofa to rest. I then had an early night as I was exhausted, plus I had to be up early in the morning ready to set off for my appointment in London.
- Friday 27th July - Early start to the day (up at 7,30am) to get myself up and ready as Patient Transport is picking my up them we're heading down to UCLH in London for a Gastroenterology appointment. Then at 9am I got a call from TASL to say they couldn't find a vehicle for my journey and they're going to have to call UCLH to cancel my appointment and say that it's entirely their fault. The situation was understandable as I'd be stuck without TASL but I still feel upset and as I've waited months for this appointement and I don't know when the next appointment will be. And I feel frustrated with TASL as I booked the journey weeks ago. I'm currently on the phone trying to get through to UCLH just in case TASL don't call them. In the back of my mind I feel as though God is telling me that I needed today to rest after yesterday and if I had of gone to my appointment today it would have lead to a major crash. Currently now been on the phone for 15 minutes and I'm now doubting whether it will ever be answered? So instead today will be another chill out recharge day as well as trying to get some bits and bobs sorted including my blog and One Second Every Day project and my distance learning course. So I managed to get through to someone at UCLH and they put me through to the sectary and I've managed to rebook my appointment for Saturday 4th August (hoping I won't struggle too much as have another appointment at UCLH on the 7th) but on the plus side I don't have to wait long. I watched a bit of Dirk Gently and had a little nap then in the afternoon I set up on the patio table and did some distance learning work and managed to do two sections of work which I feel quite please with myself about and I also got a couple of replies written to the mail I received today and when it got too cold outside I went inside and took my teatime meds and put one of the letters together then got myself something to eat and now I'm sat watching more Dirk Gently and I'm just going to rest for the rest of the evening as I'm shattered.
- Saturday 28th July - Fairly mundane day. Just had a lay-in and rested and watched TV mostly - a spoon severing day. My new headphones arrived which was nice and they where very easy to set up and I love the colour.
- Sunday 29th July - Went to church in the morning, then Spen picked me up after church and we went for a drive to a place called Appleby's where we had coffee (well, I had coffee; Spen had a pot of tea). The rest of the day was fairly boring and I just chilled out, saving my energy for going out tomorrow.
- Monday 30th - Had a lovely day today. Dad and I went to Gunby Hall (see blog post about it)a National Trust property and it was nice just to spend time just me and Dad. We go there and had out pack-up and then took an wonder round the gardens. We then sat and had coffee and cake before heading into the house where we wondered round for a while. When I got home I was shattered and so went to bed for a nap. I must have slept for about 5hrs (!) and woke up at 10pm, confused, thought I'd overslept thinking it was 10am but couldn't work out why it was getting dark outside. I then get something to eat as I needed to take my tablets and stayed up for a little while and started watching Bad Girls on Netflix before heading to bed where I nodded off fairly well despite my long nap.
- Tuesday 31st - Had quite a tired pain filled day. I was meant to be going to group therapy but when Dad got home from taking Mandy to work he found me in the hallway having a seizure. The seizure went on for almost and hour so today's plans got cancelled. When I came round Dad got me some pain relief and helped me to the sofa where I had a nap and I spent the rest of the day resting and watching TV.
Gratitude list...
- Family, friends and carers
- Helpful and caring A&E staff
- Days out
- My faith and church
- Free healthcare
- Letters from pen pals
