- Sunday 1st July - In a bit of pain today with my hyper-lordosis but made it to church this morning with help from pain relief and my TENS machine. Had a bit of a creative afternoon painting some postcards experimenting with my new watercolours and Brusho crystal paints. It didn't quite go as I planned, by hey, that's art and I just need to keep practising. I also managed to wash my hair so now feeling pretty exhausted so just watching some TV and doing a few blog things and I think I'll head up to bed when Antiques Roadshow has finished.
- Monday 2nd July - Bit of a dull day. Dad and Mandy decided that we'd go up to London tonight rather that get up early tomorrow for my appointment tomorrow in London so when Dad got home we quickly got something to eat we packed out bags booked the hotel last minute and set off down the motorway. We stayed in north London and arrived that the hotel around 11.15pm.
- Tuesday 3rd July - Didn't sleep great; I found it hard to get off and and kept waking up at silly hours so I put the TV on to fill the silence. It was quite a good job I didn't sleep great as I realised that I forgot to turned my portable alarm on! I had a quick shower improvising sitting on the floor of the shower as it wasn't an accessible bathroom and got ready. My appointment wasn't until 12.30 so we didn't have to be up mega early, but early enough to negotiate London traffic to get to SW London and it was quite a nice scenic drive looking at the buildings and people. It was a year ago tomorrow that I first saw Professor Edwards and he was once again amazing. (I'll go a better blog post about the appointment.) It was a hard appointment but I just need to hold onto hope. After the appointment we headed to the cafeteria and got something to eat then set off home. I'm now home in bed, exhausted and ready for sleep.
- Wednesday 4th July - Had a bit of a bit of a lay in this morning as I've moved my carers call to a bit later in the morning. Instead of going in the car to the post office I decided to take a walk. It was exhausting and I'm pain but i'm trying to be around of myself. The walk may be short to some but to me it pushes me to my limit and I had to lean on my carer on the walk back and we assessed on the way how I can make the journey in my wheelchair. I posted a bunch of PostCrossing postcards and a few pen pal letters
- Thursday 5th July - Felt a bit low today. I received two PostCrossing postcards today including a sparkly Moominmama postcard from Finland with a pretty carousel stamp. I had a fall in the evening as my legs decided to go in spasm. I hung out on the floor for at least an hour in spasm and Dad put some cushions around me and gave me some pain relief (this is where we could really do with the rescue meds Professor Edwards wants my GP to prescribe) and then with Dad's help we managed to shuffle and get onto to sofa. I was still in spasm but I watched some stuff on my laptop as a distraction. The spasms still continued but I managed a bit wobbly and with help from Dad to get up to bed.
- Friday 6th July - Had a bit of a lay in this morning and have been a bit brain fogged and my myoclonic seizures and spasms are still playing up and I've struggled to concentrate on much. I also got my transport booked to take me to Sheffield on the 18th for my EDS genetics appointment. With my birthday Amazon voucher I bought another sticker by number book 'Neon Nature' and that proved a much better distraction and also a huge sense of accomplishment when I finished it which felt nice. I also got a few more letters finished. The other day when I had my mega letter writing session it felt a loss that I had no letter to write which I enjoy doing but a few letters from my pen pals came in the post yesterday so I got letter writing again this afternoon and along with the sticker by numbers picture I felt a lot more productive than just watching TV all day.
- Saturday 7th July - Not much going on today. Little victories like getting out of bed and getting myself dressed. I like this time of year as I can sit in the nice warm sunroom and watch things on my laptop with a nice cup of coffee/tea. The weekends are always quiet and I lite to make the most of them and to recharge my batteries.
- Sunday 8th July - Made it to church this morning. The afternoon was spent resting and I got a section of my distance learning course done.
This weeks gratitude list includes:
- My faith and church family
- Mail that makes me smile (writing and sending)
- Pain relief
- My creative mind
- My Dad and Step-mum who are willing to go down to London for me
- Professor Edwards and being able to see other specialists and my nurse Debbie
- Patient transport
- Being able to concentrate (something so small and simple but a big deal when you have a chronic illness)
- Little victories
- The invention and discovery of tea and coffee
- Free distance learning courses
- Weekends
