👩🏼⚕️ Monday 15th JulyHad an appointment with Dr Sally today. I enjoy our appointments as even though I'm seeing her privately I like how I get quality time to sit down and talk and as she practices Integrative Medicine she looks at me as a whole person so rather than just my symptoms singular, how they affect me socially, emotionally etc.
For now I need to work on pacing myself and I have permission for power naps during the day as I keep pushing myself to the point when I'm running on empty adrenaline and then I'm crashing.
So I now have permission from my Dr to have daytime naps and I need to remember my pacing.
🌟 Tuesday 16th JulyI had my home physio this morning. I'm really glad I've swapped a) physio's and b) to having physio at home. My hospital physio was great but it's easier to be at home even though there isn't all the equipment they have at the hospital plus it's given a fresh perspective on my exercises and I now have a really awesome telescopic folder for my different exercises which I can pick and choose from. Gentle exercise for bad days, good day exercises, sitting exercises and some challenging standing exercise and now I have some arm/shoulder exercises alongside the challenges we've set.
I'm not having the best of days so it's just been a comfy clothes day.
📆 Wednesday 17th JulyHad a fairly busy day. Had to get up earlier to give me time to get ready for my 12pm appt and then at 1.30pm my support worker from the autism team came to introduce herself.
I spent the rest of the afternoon/evening just recovering and trying to watch my way through 'Stranger Things' before my step-mum's Netflix finishes.
I also spent some time on my laptop sorting some blog posts out ahead of Self-Care Week. Yes, I blog months in advance, it's how I manage to blog with a chronic illness.
🐦 Thursday 18th JulyWoke up annoyingly early due to extremely noisy cooing pigeons (though I wouldn't call it cooing, just annoying pigeon noise!). I kept trying to shoo them away but it was 🐦 pigeons 1 & 👩🏻 Naomi - 0.
It was an appointment free day so it was nice to chill out and I'm trying to remember to pace myself, but it's easier said than done when I get engrossed in activities. I did take a power nap as given permission to do by Dr Sally.
💇🏻 Friday 19th JulyBusy busy day. The morning was spent getting myself ready. Then this afternoon me and my nurse went to see he local MP and it was a really positive meeting so fingers crossed.
Then went home my travel handbag was waiting for me. It's similar to the the new Samantha Bag I've recently saved up and treat myself to and it finds really well onto my wheelchair like my other bag so it's to have some more grown-up handbags on my wheelchair compared to my rucksack photos on Instagram and ?YouTube video to come.
I had a rest before my hairdresser came round to cut my hair. I normally just have the ends taken of but I had about 2 ½ inches off approximately and my fringe desperately needed cutting - I was starting to feel like Doogle [the dog from Magic Roundabout].
I then totally forgot about my ECG appointment and I rang up very apologetically (I lost could how many time I said sorry). It's totally not like me to forget appointments but I wa so exhausted and out of routine. I managed to get an appointment for Monday morning, I'm not the best in the mornings but it needs doing.
Instead of setting my alarm for 9am I've been setting it for 8am to try and give me extra waking up time in the morning so hopefully if I keep that up for Monday it will mean I'll be awake enough for my ECG appt and I've sent plenty of alarms to remind me.
⏰ Saturday 20th JulyChilled out day wearing my "pj's" as Dad calls them aka my comfy clothes.
Not done much but my memory has been terrible. I think 30 minutes has past and it's actually been several hours.
Need to get back into my studying next week. Today has just consisted of laptops, TV and naps.
💙 Sunday 21st July
Had a nice quiet morning. The carer that was meant to come was off sick so I had a new carer. Normally new carers shadow and have trying before solo visits but this was a last minute thing and it was just a case of what carer was available.
The carer that came was lovely and she could braid hair and she said that she really enjoyed the call and she'll ask in her next mentor session if she could do more calls with me which was nice and when I the on call supervisor called me able the change of carers we discussed putting more carers into my care team as some of my carers have been promoted to be supervisors and some have left and the last minute carer I liked too so hopefully she can come again, especially because she can braid hair!
The evening call was taken by the on call supervisor who I know well as she used to be one of my regular carers but my agency try to put me with carers that a) have the training but b) are also proud my age.
Unfortunately the evening call didn't quite go as planned. I had a prolonged seizure and my carer tried to leave it as long as possible as she knows how much I hate the paramedics being called out and having to go to hospital.
Initially and EMT crew came and one of them remembered me. This time he knew I had a care plan and was happy to follow it so rather than just taking me to A&E where they would do zilch he called for a paramedic crew to come who could give me the IV meds I needed as written on my care plan. So a second paramedic crew came and they gave me pain relief and diazepam. They were here a while trying to get me stable. My uncle was called and came but he couldn't stay with me as he had to be up early to go away for a meeting in Preston so as I would be home alone there was no option but to go to A&E.
The main issue with A&E with A&E is that the paramedics do about 95% of what needs to be done; all A&E do is monitor me. At least this time they did that, sort of, not regularly but every so often my obsession where taken. One of th paramedics packed a bag in case I was admitted to I had my iPad and headphones so I just dosed and listed to and audiobook. I was feeling sick from the pain and when the Dr came he asked how I few feeling and I said I was feeling better from the meds the paramedics gave me and he was happy for me to have some IV anti sickness as I can't have the ones the paramedics carry.
Normally I'd get patient transport home but they where so backed up I'd have to wait until the morning (well, it was morning early hours) but several hours morning wait so the nurse wanted me to get a taxi. Only difficulty was my lack of crutches or better my wheelchair. A nurse and HCA helped me into the taxi and thankfully a) I had my purse with enough cash in it and b) I had a lovely driver who helped me into the house.
It was then meds, food and bed as by this point it was around 4 am.
Monday: Pressing the Netflix button on a remote control
Tuesday: Microwave one and the timer coming to an end with the light inside the microwave going off and the plate stopping spinning
Wednesday: Fast forwarding through a TV program and screen shots moving quickly past on the screen
Thursday: Closing my window; there is a key in the lock with a beaded keyring attached.
Friday: Pouring a sachet of coffee into my cup
Saturday: Bagels popping up in the toaster
Sunday: Video of my legs bend up in a darkened room with the door open and an Entonox inhaler mouthpiece on my stomach