Sunday 16 September 2018

One Second Every Day: September - Week 1

  • Saturday 1st September - Chilled out day. Had my usual Saturday lay in. The best part about today was receiving some mail from one of my pen pals which included a handmade sewn zebra so any name suggestions get in touch or comment below! Mostly spent the day watching Netflix and napping and recharging my batteries as its the only real day I have to do that and oh does my body need it! The evening/night was difficult as my asthma was playing up and I was couching and wheezing and short of breath and I was getting panicky as I was home alone. One of my handy spoonie gadgets is my watch which I can set timers on, so I set a rolling timer to go off every 15 minutes to take my inhaler. Eventually I nodded off but I kept waking up breathless but it eased off in the early hours and then I was able to get some decent sleep.
  • Sunday 2nd September - Went to church in the morning. Rik came round for a few hours. I then sat out in the garden and typed up some letters until it got too chilly and I retreated indoors to the sun room which was nice and warm. I did plan on doing my nails with Shellac™ but time ran away with me, I also spent a while making little quote cards to put in letters. The sun room looked like a craft explosion but i felt really around o myself for tidying it away and putting it all away in my room - normally I leave craft stuff out knowing I'll be using it again the following day.
  • Monday 3rd September - Mundane day at group therapy. Really struggled with fatigue in the afternoon, so when I got home I made a few phone calls and had a nap. Got some more tidying done in y bedroom and the tidying mission is coming on really well.I've now emptied the big dumping box and now only have a little wicker basket to sort out and empty. Got a couple of mini letters written to people who I haven't been in touch with in a while, basically just saying hello and that I'm thinking of you. I also managed to shower and wash my hair which I gave myself praise for as its something I find really challenging. Dad and I then watched the third part of a drama we've been watching. Dad then blow dried my hair for me. I'm struggling to get off to sleep so I'm doing some blogging.
  • Tuesday 4th September - Felt a bit wobbly today emotionally but I've kept myself busy and distracted. It probably wasn't helped by the fact that I left my meds at home so I missed my morning zomorph tablet (slow release pain med) and my lunch meds. Thankfully I had my PRN meds bag on me so I was also to keep topped up with pain relief and I took my lunch meds when I got home. Dad asked me to make some name tags for the coat pegs of his new class so I had fun making each one unique with different fonts and pictures. I also wrote a dissertation on a letter to my friend Angharad (who made me the little zebra) and buy the time I'd finished that letter it was well past my bedtime.
  • Wednesday 5th September - Really struggling physically today with my shoulder's subluxing (slipping out of place; a bit like a minor dislocation) a heck of a lot - even just bushing my hair was a task. I was struggling physically and fatigue, probably the aftermath of yesterday. I had my Bluebird visit 12-2pm today and I got a quick shower and got dressed and then we went to Tesco's; because of my shoulders I couldn't push my own wheelchair and the shopping baskets designed to attach to wheelchairs came up to my face as it was to high so we precariously sat a basket on my knee. We got our shopping done and a few things got added to the basket, though I refrained from buying may more make-up this week! As I'm trying very hard to keep my bedroom nice, I, in a very adult fashion may I add, added to y basket some lavender non-toxic lavender multi-surface cleaner and some microfibre cleaning clothes, I also bought a new reed diffuser, (but that was on my list). So when I got home I took my meds and had some lunch and watched an episode of '999 What's Your Emergency' and then pacing myself cleared all the surfaced in my bedroom to make it look tidier (items got put in my wicker basket which I still need to get around to tiding, but it's much better than the giant box I had) and cleaned and dusted all the surfaces in my room from my TV and remote controls and CD player to my windowsills and my bedside table. I also cleaned my windows and cupboard doors and my mirror. Even though I paced myself I was exhausted and it really aggravated my shoulder but it felt good and hopefully with it smelling nice and being non-toxic it won't aggravate my asthma. It still do have a bit of mess in a corner of my room but I hope to get that done over the weekend. I crashed out for the rest of the day but it wa a good crash out as despite not feeling 100% I used my pacing skills and got jobs done.
  • Thursday 6th September - A difficult start to the day with 3 <5 minute seizures at group therapy but I managed to pick myself up, though I was in pain and still in spasm for a while. There wasn't a morning group so I was able to rest on the sofa, I felt a bit bad as other people where busy preparing dinner - we was having a buffet for dinner as it was someone's leaving day, but it was a) rather busy in that kitchenette and b) I wouldn't have been much help. In the afternoon I sat with my new care co-ordinator and we went through my care plan; one that I'd been waiting a year for since I started at he group therapy programme, but it was also nice to be involved in my care plan as in the past it was just done for me. (Though getting home I realised there was a few bits i wanted putting in but forgot to mention when we was doing it, so I'll have to write it down and see if it can be put on my care plan on Monday). When I got home I was shattered so when for a sleep and the got up and had something to eat and drink. Then Mandy's friend and daughter came round and I played a game of Rumikub with her and then I watched an episode go Bake Off and went to bed and I'd barely started my audiobook before I fell asleep - I'm trying to go back to listening to audiobooks at bedtime rather than having Netflix or the TV on.
  • Friday 7th September - Not felt well today. Had a lot of tummy ache. I've been doing a FODMAP food trial of pears and not sure if that's what's upset my stomach? It was a fairly quiet an low-key day which was nice. I had an afternoon nap but used my power nap app so I didn't over sleep. I still had an early night though as I was quite tired. I think it might be PEM from yesterday and the busy week I've had? My big accomplishment today after much emailing, online form filling and many telephone calls was managing to get my Gastric Emptying Study done at my local hospital rather than at UCLH which would have meant a very early start to the day plus low blood sugars which would equal many seizures on the way there and a 6 hour test so a long day there meaning most likely seizures on the way home too. I managed to get hold of the gastro Dr I saw and he said he would send a fax to my GP practice to request the study be done here and then the results to be sent to UCLH. He was very understanding of the distance I live away from UCLH so that felt a huge relief. My local hospital isn't to best so I have no idea of the writing list but it does take away the long distance. I don't mind travelling to London for appointments and short tests/treatment but for the Gastric Emptying Study doing it locally would be much better for me.
  • Saturday 8th September - Had a recharging day (and a long lay accidental lay in - my medication alarm didn't go off). Dad and Mandy are away which always fills me with anxiety so I glued myself to to sofa and had a Netflix day as a way of keeping myself calm and safe. At tea time one of my carers came and she made my tea and I now have fresh sheets on my bed. I felt a little sense of panic on this blanket I've been asked to make as I mis read the pattern and though I only needed 14 squares but instead I need at least 14x14 squares for the blanket so I better get crocheting like mad tomorrow. Thankfully no tonic-clonic seizures, just the usually daily myoclonics.
  • Sunday 9th September - My carer had an absolute nightmare at the pharmacy, so far this pharmacy has been okay compare to previous pharmacies, the situation was so bad according to my carer (she spent 1 ½ hrs in there and still came out with no meds, despite speaking with the pharmacist explaining that I needed one medication at 9am the following day them also not knowing where one of my medication which they had the prescription for was kept, so it was agreed that my carer would collect my tray the the missing tablets would be delivered tomorrow. So queue an email to customer services to make a complaint. The rest of the day was spent watching Bake Off and crocheting.

Gratitude list...
  • Pen pals and great sewers
  • Netflix and napping
  • Spoonie gadgets
  • Medication
  • Sitting outside for a bit
  • Carers
  • The energy to clean and tidy my bedroom
  • Chill out days
  • Getting my Gastric Emptying Study rearranged