Sunday 2 June 2019

One Second Every Day - May: Week 5

Monday 27th May

Pretty mundane day. Just tried to rest to recover from yesterday. This evening my Auntie and Uncle came to stop over from the night as they've been down south so they're staying the night to break up the journey. It's nice seeing family.

Tuesday 28th May

At lunch time Dad and I finished off the film we started to watch the other night.
I then got myself ready to leave the house as I had an acupuncture session. I still get anxious about my seizures but Mel tries to relax me as possible and it is quite relaxing and I am noting that it is helping in some ways, like last week my shoulders where so tight and this week they've really eased off.
I came home an I was exhausted so I had a lay down for an hour and then Dad and I had our tea and I just watched TV for the rest of the evening then went to bed.

Wednesday 29th May

I managed to have a little bath and then I had a rest. I've done my makeup today as I haven't put on any for a while and it always makes me feel brighter.
My advocate called me to remind me that she was coming at 2pm.
She came and we had a chat. I feel so lucky yo have her supporting me as before she came along I felt so voiceless an now I have someone backing me up and getting my care moving rather than just stagnantly not going anywhere and trying to find ways of supporting me until I get my bed for neuro rehab in Leeds.
This evening my step-sister came round for tea then I had a rest and we went to the cinema to see 'The Secret Life of Pets 2' which was really good, plus it was nice to get out of the house.

Thursday 30th May

Enjoying having a day of nothing.
Pain woke me up early so I made myself a coffee and sat up in bed with my laptop.
I'm trying to get in a routine of washing my face every day. I've also put some makeup on again even though I'm going nowhere but it makes me feel brighter. 
I spent some time putting my birthday wish list together and watching TV and laptop stuff as well as trying to sort of holiday insurance which is complicated as I'm waiting to go to neuro rehab Leeds so I need to call the secretary for the ward tomorrow to see if there is a possible chance that I might get a bed when my holiday is booked for in November.

Friday 31st May

Did some more sorting of holiday insurance. As I'm waiting for treatment in Leeds many insurance companies won't cover me for cancellation should I get a bed around the time of my holiday in Leeds but I phoned Leeds, I still have a way to go on the waiting list (they only have 4 local beds and 4 beds for the rest of the UK) so it looks like I'll be waiting a while which is frustrating as I'm so desperate for their support and getting some sort of treatment and management of my symptoms. But, should I get a bed around the start time of my holiday (end of November) they can delay it until after my holiday and being at the bottom of the waiting list. Still at least I'm not on the waiting list and I have the funding. I just feel frustrated that my GP didn't do the referral sooner (it took him 14 months to get round to doing it and I'd probably still been waiting if I hadn't;t of gotten and advocate). So, I can go for the cheaper holiday insurance and save over £120, I just risk not getting my money back if I have to cancel my holiday if I go to Leeds sooner then November time.
Had an appointment with orthotics this afternoon. The person I see is really clued up on hypermobility disorders which is rare for where I live. My knee brace isn't quite doing the job so he's going to send it off for modification. If that doesn't work I'll need a bulkier brace so we'll see if the modifications help. My current brace also isn't really doing much for my patella dislocation so he's changed one of the velcro fastenings to see if that makes any difference or not and to drop it off with a not to see if that's helped or not and also to drop it off so it can be modified. He'd seen another patient earlier that day who's having the same issues as me so we're both going to have the same modifications to try and prevent hyperextension (bending backwards) of the knee. If not then I'll need a different know of knee brace. Only issue with the bulkier one is if I need one for each knee they might catch on each other. Currently i just wear a brace on my right knee but my left is starting to play up.
I'm also getting better insoles for my feet. When he assessed my feet (thankfully I've lost a lot of sensation in them so I can now tolerate them being touched!) he noted that there was significant weakness and power in my feet. So new insoles and if they don't help he'll make me some custom ones.
Home after a bit of an issue with patient transport. They blamed me when I felt it was an admin error and the lady had a bit of a moan at me which didn't;t help my mood and I've already not been feeling 100% so I sent off an email to their 'Patient Experience Team'.

Video description

  • Monday: Taking my medication tray out of a pharmacy paper bag
  • Tuesday: Rinsing a medicine cup under a running tap
  • Wednesday: Photo of cinema tickets for 'Secret Life o Pets 2'
  • Thursday: Scrambling up some egg in a glass jug with a fork
  • Friday: Clicking a task completed on my laptop's 'to do' list