- Thursday 1st November - Quiet day in the house. I didn't really get up to much. I summed up the energy to have a bath and used a Lush bubble bar that I hadn't bought before and it smelt amazing. I was pretty wiped out after my bath so I just rested. I did a few admin things like booking patient transport for my Dietician appointment and for my appointment in December for the Pain Management programme. I'm making good progress with my crochet blanket which feels good.
- Friday 2nd November - I had my appointment with orthotics today at the hospital to get fitted out for a knee brace which will stabilise and support my lax knee which likes to slips of places which should hopefully reduce my falls.My right knee is the worst so if that helps the lady said they could get me one for my left knee too. She asked me what sort of dislocations I have so she could find the best brace for me and she showed me a few possibilities in a catalogue. It will be a hinged on so I will be able to bend my knee as I thought It would keep my leg straight which would be a total inconvenience when trying to walk and when i'm sat in my wheelchair! I'm not sure yet what brace Im getting as she was going to contact the company to ensure I had the right brace and that it was latex free, which I'm guessing it will be as I can't see a need for latex in a knee brace, but then I had to obtain my own wrist braces as the hospital couldn't get me a guaranteed latex free ones. I then made a follow up appointment to collect an fit my brace but I'm going to ave to wait until next year as they're so busy which was a bit frustrating, but understandable. I then got home and was exhausted so I had a lay down on the sofa and accidentally nodded off. I spent the rest of the evening crocheting and watching TV.
- Saturday 3rd November - My postcard that Dad and Mandy sent me from Vatican City arrived today. I had my usual Saturday lay-in and just spent the day watching TV and crocheting and resting.
- Sunday 4th November - Made it to church this morning. There's something that's been weighing heavily on my mind and heart so after church had finished I spoke with a couple of friends at church about it which helped. I got home and was pretty tired so I had a nap after getting something to eat. My nails where also in separate need of sorting out as my Shellac needed taking off but I just hadn't;t gotten round to having the energy to doing it. I did want to reapply my Shellac but two of my nails had spilt really badly and i felt gutted as whilst I had my Shellac on they grew really nicely so I put some nail strengthener polish on and will Shellac them when they've grown a bit.
- Monday 5th November - Had a nice quite day in to myself so had the opportunity to have extended pj wearing without getting moaned at to get dressed. My energy levels where okay-ish today so I took the opportunity to catch up on my crochet and crack on with it as feeling the pressure to get it made despite making good progress with it so far.
- Tuesday 6th November - I had my second appointment with my support workers from L&H Homes and we made good progress. They contacted the CCG to find out about my special funding request for my rehab in Leeds as the referral was made November last year and I still haven't heard anything about it. hey also go on the phone to adult social care. Initially the lady on the phone was extremely rude which shocked my support worker who was new to the role and she said hat in all her 25 years of working she's never been spoken to another professional like that, but then my other support worker called up and got the same lady which she'd had run-ins before with and the lady on the phone changed her tune and hopefully I'll be getting a CareLink finally after so many years of requesting it and also an occupational therapy assessment. Social Care don't deal with Continuing Health Care assessments so they've taken down the details of some of the people in my care team like my district nursing team, but I feel ultimately that (when they get round to organising themselves!) it will be the Complex Care Team who will deal with that. We also made plans to go to the gym next week for an induction to use the toning suite. When they left I called the sectary of the Complex Care Team only to find she had left and the manger was suppose to call me but didn't. I then got myself a quick something to eat and then TASL (patient transport) turned up to take me to my appointment wit the Dietician. It was a dietician I hadn't met before but she was lovely and we spoke for ages and it was a really helpful and positive and productive appointment. The Low FODMAP diet is going well and I said I've had to take the reintroduction slower and she recommend adding some seeds into my diet and gave me some liquid nutrition recipes for when I'm struggling with solid foods and in the new year I'm going to start back having some wheat and gluten in my diet to be tested for celiac so I'm not looking forward to that as when I tried to reintroduce it it didn't agree with me, but I'll give it a go. I also spoke with her about how nutrition plays a part in my dysautonomia and how i'm trying to have smaller meals and have more salt and she's going to ask my GP if he could possibly prescribe me electrolyte solutions and also let him know about the celiac food trial. When I finished with the dietician she called patient transport to collect me She made me a coffee and sat with me whilst we waited for transport and I explained if there was a wait for transport I was to be referred tot he discharge lounge. Thankfully the crew that brought me turned up before I had time to finish my coffee (but they let me finish it). The appointment was only meant to be half an hour so the transport crew that brought me had been and gone to collect me and hd gone to the discharge long to see if I was there too. I've worked out a system of how to get patient transport to pick me up wit having t wait too long and since I put in complaint about the wait and them putting in a care plan to say I go to the discharge lounge the I have nurses around I've barely had to wait at all for transport and I've all the crew members I've ever come across have been brilliant. When I got home I also called my care agency's nurse for a catch-up and to let her know about the Complex Care Team as she's been dealing with that side of things for me a lot so she's going to chase that up and also my neurologist as I haven't had a reply to him from the email I sent him a while back.
- Wednesday 7th November - Got and abrupt wake up. Set my alarm for 10am to get up and get my breakfast fr my carer to come at 11am. Instead my carer turned up at 10am and the office didn't tell me so it took me a while to get my body functioning so my hope to pop out went out the window. I also got a call from Care Link and they're going to come and install the system tomorrow. I've been waiting years for that to happen and it will give me some peace of mind for those 'just in case' emergencies, hopefully I will rarely need it. My Amazon order also came so I've got 3 more people's Christmas presents sorted, though for one person I'm going to try and handmade a little something. I had a bit of a letter writing session and in my usual fashion I had stationary chaos on my bedroom floor. I didn't get round to doing much crochet as the afternoon just went so quickly. In the evening I had my bible course at church. I got home and was shattered so I had a tidy of my bedroom and did a few things on my blog and now I'm just going to get off to bed.
- Thursday 8th November - Carelink came this morning to install the system. It's been really cold today so I've been hugging my heat pad. Mid afternoon I had my ½ hour care call so we went to the Post Office. I gave my carer a bit of a scare when I fell to the floor. I was exhausted when I got back and ended up having a sleep on the sofa. After tea I finished off my crochet and now I'm heading to bed.
- Friday 9th November - Not such a good day seizure wise. Woke up not feeling 100% and struggled to get out of bed and then had ⅔ tonic-clonic seizures at breakfast. I then just spent the day on the sofa trying to get a bit of my crochet done. Around half 2 the home library lady came with some more audiobooks and we had a nice chat. Volunteers and services like that are a bit of a lifeline when you're more-or-less housebound as a0 you're still able to access services like the library in an around-about way and the library I have a link with someone at the library who's good at getting new audiobooks in so I've requested two that I've found are on Netflix and I've found out where originally in book form - 'Pretty Little Liars' and 'The Haunting Of Hill House' and b) it's social company and I always have good chats with the volunteer that visits me. In the evening after packing the shopping away I felt another seizure coming on so I just got myself on the kitchen floor. This was about 4.45/4.50pm and thinking Dad would be home soon I didn't press my CareLink. At 6.35pm approx I started to come round from my seizures. Dad was home. My jerking had triggered my CareLink as I was wearing my alarm on my wrist but Dad was around to tell them he was handling things. I'm' not sure what time Dad got home so I have no clue how long I was on the floor alone for. I'm unsure in future wether to press my CareLink just in case, even if Dad is just 5 minutes away from home or an hour from home as it's so unpredictable when he will be home? I just don't want to feel a nuisance to them, especially as I have so many falls and daily seizures. But then on the other hand if they document all the calls it can be evidence. When I cam round a bit more Dad got me some pain relief and put my tea on and helped me to the sofa. I was still in a lot of spasm after eating and I desirably tried not to throw my tea at the wall(!) so Dad got me some diazepam. We watched a film which was nice and a good distraction. Mandy was looking at my wrist alarm and accidentally set it off, oops! At least now its peace of mind to know help is there when I'm alone and hopefully with time I will get the funding for more care. Anyway, I'm exhausted and in pain so I'm going to settle in bed with some Netflix and hopefully the pain relief I've just had will help so I can get comfortable.
- Saturday 10th November - I had a nice lay in this morning and found it hard to get up. I woke up feeling more tired than I went to bed. Dad and Mandy had gone out for the day so I was able to have extended pj wearing and then I managed to get washed and dressed before Beth my step-sister popped round briefly to drop off some clothes that she needed Mandy to mend. I then
- Sunday 11th November - I accidentally overslept this morning but still managed to make it to church. The aversion was spent not doing much, mostly just TV and crochet.
Gratitude List...
- My family, support workers and carers
- The NHS, NHS staff and Patient Transport and CareLink
- Making good progress with my crochet
- My church, faith and church friends
- Having okay and good days and getting through my bad days
