Struggled to get up in the morning. Did my usual morning routine and then got myself dressed and did and extra tidy of my bedroom and the bathroom.
Debbie my nurse from Bluebird Care came round for a catch-up at 12pm and then at 1pm Dennis (my Care Supervisor at Bluebird) came round to join us for my home OT assessment. The OT came and she was lovely and she went through a questionnaire with me and then one of her colleagues joined us.
I feel like the assessment went well and I was listened to. Some of the things we're going to trial is a bed raiser that will raise the head of my bed up and down for when I need to sit up or lay down without having to struggle with cushions and also instead of my bath board where I struggle to lower myself on and off the bath board into the bath they've suggested a bath lift to trial. Some things where a bit of a no-go as Dad and Mandy aren't keen of the idea of things like grab rails drilled into the wall. The OT is also going to write a medical needs letter for housing for me to use if needed should I get funding for care so I can apply for an accessible adapted property.
The OT, she's also going to speak with the home physio team to see if I can get home physio as my GP wouldn't authorise it (but didn't give and explanation as to why or ask me why I felt I needed home physio) so hopefully that will happen as I'm really going to struggle to get to the hospital and back which how my health has been.
During the assessment my muscle spasms started to play up and I needed to take my lunch meds and Dennis was going to make me something to eat after to assessment and when I went to take my tablets I realised I forgot my breakfast meds (major oops!).
Towards the end of the assessment I was getting quite tired and I had a few myoclonic seizures and then I suddenly had a tonic-clonic seizures, and then another and another and it went on for over half an hour. Debbie and Dennis tried to leave off calling 999 as they know how much I hate ambulances and A&E (to put politely - aka hell on earth) but it got to the point where they had to call for an ambulance.
Stupidly EMAS (for the second time now) sent an EMT crew to me who aren't qualified like paramedics to cannulate or give IV diazepam like my care plan states and they weren't happy to give me any of my own liquid oral meds incase I aspirate on them. Debbie and Dennis tried to persuade them to let me stay st home as they can stay with me but they said as they was there now it was protocol to take me into A&E.
Thankfully Debbie followed the ambulance and stayed with me in A&E for a while and whilst she was there she gave me me diazepam and some oramorph which a) A&E would have taken A&E hours to get round to doing or b) wouldn't give me the medication despite my care plan. Debbie had to leave but I only had to wait on my own for about an hour/or two (time was a bit blurry) staring up at the ceiling (hospital seriously need to have more interesting ceiling if you have to lay looking at them). I'd managed to speak with both Dad and Mandy with Debbie's help and when Mandy was free she came with shoes and my crutches to pick me up form A&E and go home early as when the Dr saw me and Debbie had said what meds she'd given me he said they'd just "monitor me" aka laid on a trolly in the corridor with no one at all coming and checking and asking me how I was.
So Mandy came and we got home where I got more care and monitoring than I was getting (as usual) in A&E. I had a little cuddle with Flop and then went up to bed and Mandy got me something to eat as my blood sugars where low (unsurprising as I hadn't eaten since breakfast) and I also needed to take my meds. As a distraction I sat in bed and did some blogging and wrote some PostCrossing postcards.
Tuesday 15th January 2019
Woke up this morning in a heck of lot of pain due to my right shoulder being dislocated so I took some pain relief and put something to watch on my laptop. I can't wait to get this bed head raiser as it will be so much easier than having to mess around with cushions, especially when you're in sky rocketed levels of pain. At 11.30am I had someone from the Red Cross come round just to chat to she posted some letters for me. In the afternoon I had my Bluebird visit which was moved over from yesterday. I was quite tired after so the rest of the evening was just spent not doing much.
Wednesday 16th January 2019
I started on a new crochet project today making a baby blanket for a friend a church. I also got round to finally cleaning Flop out. In the afternoon I had my physio appointment. It was a new referral even though I've been before so most of it was paperwork, questionnaires and just a physical assessment. It was with my favourite physio Suzi and there was also a new to the department physio that joined us just so he can learn. I've got some exercise to do and once I get my knee brace fitted we can start some work in the gym. I've worked out how to sort out patient transport so they arrived just before I finished with Suzi so there was no waiting around to go home. The rest of the evening I just spent crocheting and resting.
Thursday 17th January 2019
I had Rosie my carer 11.30am-1.30pm today. It's been quite cold today so most of today has been trying to hibernate and keep warm and do some crocheting. I also had a home visit from my support worker at L&H who's going to look into getting a befriender for me as the Red Cross is only short-term support. I had a seizure just before tea so Dad kept it warm for me and I was pretty tired and out of it so after I ate I went and laid on my bed an put on the TV and had a doze but I tried not to sleep too much so I sleep well tonight. I've dyed up two short letters and now i'm just about to settle down and go to bed.
Friday 18th January 2019
Struggled to get up this morning then at 11am, still in my pj's Jess one of my carers turned up. The office had changed the time without letting me knowing which was super annoying. Jess and I went out and got some (cold) fresh air for something a bit different. I've spent most oft day in the sun room for a change of scenery and made it toasty warm with he heater in there and got on with crocheting the baby blanket that is my current project. It's star shaped and is really easy to do and I've ordered more yarn and I'm going to try and make it as bi as possible and I showed my friend Dani a picture of it (as its for her baby) and she loves it which is really nice and she's invited me to the baby shower party in March. Abi also posed round for a few hours and we had a good catch up and drank tea. I got lost in my crocheting and went to bed later than I wanted to and now i'm struggling to get off to sleep due to pain and it s that verbalised achy background persistent pain and one of the problems with FND is that pain signals can remain switched on in the brain for days, weeks, months and even years and pain relief meds don't always work so it's just a case of trying to distract yourself as best you can.
Saturday 19th January 2019
Had the worst sleep reversal i've had so far. Didn't get off until around 4am and then forced myself out of bed at 11.30am-ish (but could have stayed in bed way longer), thankfully I took my 10am meds before nodding back off. Today has mostly consisted of crochet, easy watching TV, crochet, rest and cuddles with Flop. I've also really struggled with my PTSD today so ended up picking up the phone for support and I was encouraged to taken my PRN meds and I'm now settled in bed with distractions and self-comfort and I'm also glad that thins morning I found 'Mouse' as I thought I'd dropped her out of my pocket and lost her somewhere. So now for an early night and hopefully better sleep.
Sunday 20th January 2019
(Writing this on Monday so can't quite 100% remember what I did) Struggled to get up this morning so didn't make it to church. Spent most of the day resting, watching TV and getting out my sticker-by-numbers book which I haven't done in a while. I've not been able to work on my crochet blanket as I need more pink yarn. I also got a letter finished off to one of my pen pals. I'm trying hard to get into a sleep routine so I did that at bedtime.
- That the new OT gadgets will help
- That my care in A&E will improve and my admissions this year will reduce.
- That having the Red Cross coming round will help me and give me some company and that my support worker from L&H will be able to find me a suitable befriender that I can feel safe will and leave the house with
- That my sleep routine will improve and help me
- That next weeks appointments go well
- That next week's PEM won't be too bad
[Video description: Monday, a view down an A&E corridor. Tuesday, a still picture of the Red Cross leaflet. Wednesday, a view of the physiotherapy department waiting area with different types of chairs and information notice boards. Thursday, me stirring a cup of milky white water and powder with a green measuring spoon (one of my nutritional supplements). Friday, a video clip of me crocheting. Saturday, me going Flop the guinea pig a pice of broccoli stalk. Sunday, me placing a sticker on a sticker-by-numbers book]