- Monday 19th November - My carers turned up this morning rather than this afternoon without being notified thankfully I had dragged myself out of bed about half an hour before so I was awake. I just had a quiet day and got on with my crochet (not easy when your having myoclonic seizures!) and made a few phone calls on my to do list.
- Tuesday 20th November - Had a quiet morning and early afternoon then at 3pm I went to the salon in the village for a massage and facial. I was in a lot of pain in the evening and ended up calling the GP surgery as my pain has been getting worse over the past few weeks so hopefully my GP will call me tomorrow. As the evening wore on my pain got worse and worse to the point I was close to tears which is not like me at all. Litrarally everything hurt - my stomach, my muscles, my joints, my bones and my nerves. Everything. My integrative medicine Dr hd sent me some special herbal digestive tea and Mandy made me a hot water bottle and too some oramorph and I curled up on the sofa watching old episodes of Bake Off on Netflix. Eventually I was comfortable enough to head the bed but it too me a while to get comfortable and off to sleep.
- Wednesday 21st November - I had my Bluebird visit this morning. My carer turned up earlier than expected. I had a little seizure with my carer, it only lasted a few minutes so I took some pain relief and my inhaler and rested afterwards. I managed to get one box sorted and put away in my bedroom so it's slowly getting tidier. I had a quiet afternoon and Pinterest has also made it easier to organise things so I spent quite a bit of time organising my Pinterest; if only I could do that with my life! Then in the evening I went to church for Week 5 of the Bible study course. I'm really enjoying the course and its helping me to understand the bible better and it nice to ask questions and share ideas with other Christians.
- Thursday 22nd November - I really struggled to get of to sleep despite being exhausted and only got off to sleep in the early hours so I did some blog admin. I set up an online form to hopefully try and make it easier for people to submit and share their stories. I also shared all my posts to my Pinterest blog board. I really struggled to get up again and when I got up I was a bit wobbly on my legs and my knee dislocated and my sock slipped and I fell to the floor dislocating my shoulder. Both joints went back in but I was in the kitchen so there was nothing to use to pull myself up and I was too weak to do anything anyway. Thankfully my CareLink alarm went off when I fell and the lady stayed with me as I tried and failed to get up so she arranged for the Rapid Response Team to come out to help me out. They came and I wasn't waiting too long for them and they used a special machine to get me up an got me some of my pain relief and some breakfast and I'm now just resting on the sofa watching TV. My support workers from L&H home was meant to come at 11am but I emailed my support worker to let them know about my fall so she's going to reschedule the appointment. I was meant to meet a friend for coffee but I've rescheduled that too for the weekend as the district nurse was meant to come out to me today but she rang me and she's not going to come today as she was going to do a continence assessment but as I'm already under the continence team it would just complicate matter and she asked me about my pressure sores which are okay at the moment and I said my physio gave me some exercises to prevent them and she also going to make some enquiries about falls prevention like physio as I'm too young *apparently* for the specialist falls clinic so she's going to make some enquiries and get back to me and she said that if I ever have any issues or need blood taking and can't make it to the GP practice to just pick up the phone. My plan is to just rest today and get some replies done on some letters as I have a pile stacking up. I might also do a sticker by number if I feel up to it if I get bored of the TV. Didn't;t manage the sticker-by-numbers but did get a couple of replies written before bed and managed to do some crochet. I now have done 11x14 squares plus 4 sewn on. I'm just hoping I get done on time.
- Friday 23d November - Woke up with my phone ringing and had a half-asleep-must-have-sounded-drunk phone call with my care co-ordinator. Calling PALS yesterday did the trick in getting contact from him. Finally got out of bed and had a pj morning and then in the afternoon I dragged myself upstairs to get some clothes on. Had a quiet afternoon with my crochet and the TV on in the background (can't quite recall what I watched). My GP called me and I explained how my symptoms have been getting worse and also my pain so he said to monitor how my extra oramorph I'm taking over the next week so he can adjust my zomorph dose. I then got my bag ready and at 5.20pm I began my wait for patient transport. Just when I was on the phone to TASL they turned up. Dad and Mandy are away this weekend for a family get together so I let CareLink know that if there was an emergency it would either be the Rapid Response Tam or 999 if there was any emergencies. My friend who on the ward at the moment came and sat with me in radiology for a bit which was nice as I haven't seen her for ages. I'm hoping to meet her tomorrow in the café. They was originally going to do my CT scan in the mobile unit outside but with my seizures they decided it would be safer to do my scan in the main radiology unit just in case. Thankfully nothing happened but I was getting a bit sensory overwhelmed and because I'd had to fast my blood sugars where probably low so my myoclonic seizures started to play up so it was hard to stay still in the scanner. Scan done it once again on the phone the TASL to let them know I was ready to go home the crew turned up. Once I got home I got myself a snack and watched some TV. I always hate it when Dad and Mandy are away. I literally glue myself to the sofa to prevent any incidents like falls and I know I'm safe there should I have a seizure. I was considering sleeping on the sofa but I've manage to get myself into my pjs and into bed so I'm just going to settle down with some Netflix as I never sleep well when I'm alone and I can't put the burglar alarm on as Flop sets it off!
- Saturday 24th November - Struggled to get out of bed as usual but needed to be up for my carer coming at 11am. Carer came and went and I had some lunch, did my make-up. I'd love to do my make up more but it takes such a lot of energy to do and it's trying to find ways of holding the brushes when your hands are in spasm. Anyway, running late I met a friend for coffee. She's currently in hospital so we met in the hospital cafe and then we went up to her room on the ward and spent ages catching up. I was starting to get quite tired so I headed home. I took my meds and got some tea on and settled down on the sofa. A little later on I started to feel a seizure come on; I'd been twitching (myoclonic seizures) all afternoon, so I pressed my CareLink. I had several tonic-clonic seizure episodes but when I did come round I was in rigid spasm from head to toe and having full body myoclonic seizures and I was in a heck of a lot of pain and I couldn't move to get any pain relief. Thankfully my bag was next to me so I managed to get my inhaler but I couldn't get my pain meds. The seizures and spasms continued and the lovely lady on CareLink stayed with me and then she arranged for an ambulance to come out to me and she stayed with me until the paramedics arrived. I'm full of gratitude for CareLink. The paramedics arrived and I was insistent that I didn't want to go to A&E. They got me on some Entonox for the pain which helped and then they got me some of my co-codamol made up and once the pain settled they helped sit me up and they when the pain and spasms eased some more they got me onto the sofa and we went through the paperwork. They did my obs - blood pressure, temp, pulse and O2 levels, blood sugars, ECG etc. They wasn't happy for me to be home alone, just in case I had more seizures but also because of the side effects from the Entonox so I got them to call my step-sister. Throughout this whole things my seiche had totally gone weird. My stuttering and loosing words was the worst its been. Once the paramedics where happy with things they left me with Beth with instructions that if I did have any more seizures to call 999. I did have one small seizure after they left but we decided not to call 999 as it was only a little one but if they got worse we would follow their guidance. Beth was brilliant; she made me a hot drink and helped me with my meds and taking things upstairs and when I felt settled I let her get off home and I went upstairs to settle in bed and watch some Netflix.
- Sunday 25th November - I slept for pretty much the whole morning. pain wise I've struggled today. I't not been acute pain but just that horrible background pain that won't go away. Crocheting helped and I get 4 squares made and quite a few sewn onto the blanket. In the evening I had a seizure/spasm episode but Dad and Mandy was home by this point. I'm now settled in bed exhausted so I'm just going to play some Netflix and hopefully get comfortable and nod off.
Gratitude List...
- CareLink, the NHS, Bluebird, the Rapid Response Team and TASL
- Coffee and catch-ups with friends
- My stepsister Beth
