- Monday 4th June - Bit of a dull day. Made some birthday cards as have a few birthday's coming up. The evening wasn't so great asI had an hour and half long seizure. Thankfully Dad and Mandy was at home and Dad stayed by my side the whole time and gave me assistance where I needed it. Once things had settled down, though I was still a bit twitchy I went and put my pj's on and Dad helped me upstairs and I got settled in bed and went to sleep as I was exhausted.
- Tuesday 5th June - I stayed at home today as I was in a lot of pain and exhausted from yesterday's seizure. I mostly rested and watched TV and I made Dad's Father's Day card. I also phoned St. George's Hospital's Neuro Services Manager as I was concerned as I have an appointment with Professor Edwards at the beginning of next month and I still hadn't received my appointment for my video telemetry test. This afternoon I got a phone call to say there had been a cancellation and could I come in next week for my video telemetry It's a 5 day admission so there was a bit of madness making phone calls cancelling next weeks appointments and getting extra medication ordered and I also to get an extension on my distance learning work. I feel all bit of a flutter as I've been wanting this video telemetry appointment since July last year and now I feel quite anxious at the though of being in hospital in London for a whole week and trying to get organised like making sure I have a profiling bed and they are aware of my care needs and assistance etc and starting to think about what to pack. I also called patient transport to make sure there was enough notice and when the admissions co-ordinator called me I explained I needed to know when I'll be admitted to book patient transport so I'm waiting for her to call me back tomorrow and I'm going to mention to her tomorrow my care needs so they're prepared for me. I think part of my anxiety is my sure poor care experiences of being admitted to my local hospital, but hopefully St. George's will be better equipped and there will be healthcare assistance on hand to help me where needed and it will be a specialist neurology ward too. Update, just got off the phone from the Neurology Services Manager and put across my care needs and wishes and he's going to speak to the manager of the ward and see what can be done. Just going to rest up for the rest of the day and hopefully get the final episode of Pompeii with Dad and Mandy that we was meant to watch last night if depending on if Dad and Mandy are going to their house group tonight if not, if they are we'll have to wait until tomorrow to watch it. I mighta so try and get some college work done if I have the brain power.
- Wednesday 6th June - Not a very interesting day. Overslept this morning and woke up to the doorbell with my carer arriving. Was quite tired when she left so spent the rest of the day resting and making the most of having no plans. In the afternoon I had a telephone appointment with the Pain Clinic to do a medication review but the nurse prescriber has passed my case onto one of her colleagues, a doctor who can deal with more complex cases so need to wait for an appointment for that. Aslos did more organising getting ready for next week.
- Thursday 7th June - Bit of a dull fatigued day. Finally got my letter from St. George's Hospital and called up the ward and ad got and admission time so book patient transport to get me down there. Did more packing; feeling quite anxious; hoping I'll remember to pack everything I need and had plenty of things to keep me occupied and clothing that will be suitable to get on and off which having electrodes stick to my head. My sticker-by-number book arrived and so did Season 2 of Chicago Med. I'm expecting my mandala dot-to-dot book to arrive tomorrow so that's a few things to keep the boredom at bay. Watched an episode of Desperate Housewives with Mandy; now its time for bed as have group therapy in the morning.
- Friday 8th June - Not a very exciting morning. In the afternoon I had an appointment at the salon for a massage and a facial. I find massage really helps me manage my pain and unknots my muscles and helps my stress levels which in tern helps with pain. My mandala dot-to-dot book arrived and its certainly going to keep my busy next week as there's over 10,000 dots to connect! (Must remember to take my magnifier!) Going to spend the rest of the afternoon watching TV and resting and maybe do some more packing. Feeling very anxious about next week, especially being in a bay as I'm worried it will make my symptoms worse, especially my M.E.
- Saturday 9th June - Lazy morning having a lay in. Aied to get up at a specific time, 11am, rather than waking up when my body is ready like normal but didn't end up getting out of bed until about 11.30/11.40am. I then did my usual morning (restful) routine of sorting my days meds out, watching TV getting breakfast etc. Mid-afternoon Mandy and I went to Tesco to pick up some things for next week - magazine, puzzle books, ear plugs, travel razor, snacks etc. I feel like I've way over packed but I want to ensure I have enough to keep me occupied and having enough clothing and other bits and bobs. In the evening we all sat down and watched 'The Theory of Everything', a film I've been wanting to watch for ages. It was very moving and really insightful into the easy life and work of Stephen Hawking. His resilience towards his illness also shone through, like how he dealt with it through humour, like we do at home with my illnesses and his sheer determination to carry on when his body was failing him. Towards the end of the evening my headache was turning into a migraine so when I went to bed I dosed up on Sumatriptan, pain relief and anti-sickness meds and got myself a wet flannel for my forehead. I was almost a breaking point with tears with the pain but eventually I managed to get off to sleep. Its now 5am on the Sunday morning, I've just woke up and my neuropathic pain flaring up so I thought I'd fill in yesterday's post as I couldn't due to my migraine.
- Sunday 10th June - Had a rest day today as have an early start in the morning. Called up the ward to check my bed is still free and called patient transport to get an ETA for my pick up. Had lay in and watched a bit of TV, also did some letter writing out in the garden and the birds where pretty sociable. Mandy also went through my suitcase with me so hopefully I'm all set for next week.
Tuesday, 12 June 2018
One Second Every Day: June - Week 2
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