Friday 1st MarchB-A-D PEM day from Thursday's trip to London (only managing to write this Sunday).
Spent the whole day in bed except to go downstairs to bring my breakfast and a drink upstairs as Mandy was out running errand and I also went downstairs mid afternoon for 10 minutes to eat so soup but just doing that tired me out enough to need a nap afterwards.
My blinds remained shut tho whole day. Most of the day was spent laid flat as my POTS and OT (Orthostatic Intolerance) was playing up big time.
I managed to watch Amazon Prime on my laptop with the screen on the dimmest setting and the volume as low as I could get it.
I felt really flu-like and also had a migraine all day.
Mandy brought up drinks for me and kept popping her head round the door and Dad did the same when he was home from work.
It took me a while but at bedtime I changed into some fresh pj's.
Saturday 2nd MarchStill having a rough day and had a quiet morning.
Mid afternoon with Dad's help I managed to clean Flop out as he was stinky. Straw bedding wasn't the best we've worked out so Mandy bought some wood shavings this morning which smell much better.
After a something to eat and a rest I had a bath (just gone 4pm by this point and I was still in my pj's). It was a spoonie bath, aka lay in the water and just pour jugs of water over you and then have a quick wash of your face, but I felt better for it and left my usual talc explosion on the floor. Having the bath lift makes days like today so much easier.
The rest of the day was spent curled up on the sofa drinking cold and flu herbal tea. At least I wore something other than pj's for a few hrs today.
Sunday 3rd MarchI really struggled to wake up this morning. I took just less than 1¼ hrs from my initial alarm going off. Still feeling pretty shattered so I decided to conserve my spoons and miss church again.
I have managed to get dressed before midday today!
It's now 2.13pm and I've had my main meal (when I'm eating for myself I prefer to have a small breakfast, then mid afternoon have a main meal to keep me going (though I still need to eat small portions) and then have a light meal in the evening) though writing this now I've realised I forgot my salt - a big thing for people with dysautonomia and POTS is to have extra salt in their diet.
Dad and Mandy are out for the to a surprise birthday meal in Lincoln so I've set myself up on the sofa with plenty of drinks and blankets so I don't need to go far. I've also got my CareLink just in case. I also have permission to put the heating on.
I'm not keen on being alone as I worry about having a bad seizure or fall but I have to but equally I like the independence and the quiet and being able to do what I like when I like.
Dad and Mandy weren't back as late as I thought. The got back around 5pm and we all ended up going and having a nap. I slept until around 7pm and then had something to eat and in the evening we watched Endeavour.
Monday 4th MarchGetting out of bed was very difficult today. It took me about an hour ½ from my first alarm going off to then waking up to then getting out of bed.
I've not done too much today. I had my carer this afternoon.
Mandy left me with a few jobs to do an by pacing and breaking tasks into little manageable chunks and rest in between I managed to get them done.
I also called my advocate to see what was happening with my Continuing Health Care assessment.
I've also done a lot on my blog today.
This evening we (Dad, Mandy and I) watched the last episode of Endeavour.
Tuesday 5th MarchI didn't get off to bed to easily due to pain even though I was exhausted and I was feeling low in mood too which being tired probably didn't help. Lately I've not been doing too bad at getting off to sleep.
Had a quiet day in apart from my L&H support workers beefy popping round but there's not much for them to do t the moment.
This evening we had pancakes for tea.
In the evening I spent quite a lot of time on my laptop trying to working out how to get a dropdown menu on my blog without having to try and work out some complicated computer code which I managed to do and then I spent ages creating the menu and adding and transferring the information; it was quite a job!
I think I over concentrated and over tired myself. Late evening (gone 9.30pm as Dad and Mandy where back from church group), I had an absence seizure and then mid absence seizure my heart started to race and I got hot and I knew I was going to have a tonic-clonic seizure but I couldn't act because I was in my absence seizure. Over 1½ hrs later I'd spent that time in various states in consciousness, having tonic-clonic seizures; myoclonic seizure in my arm and in my whole body; unable to speak; in full rigid spasm and in a lot of pain.
By the time I was able to crawl upstairs it was pretty late but I nodded off fairly quickly.
Wednesday 6th MarchStruggled to get up this morning.
Had my ½ hr Bluebird call this afternoon and we dropped some mail off at the post office and then my carer braided my hair for me.
Quick stop for something to eat and then my friend Abi came round and we chatted for a while.
I was pretty exhausted by this point so I had a rest and then did some more work on my blog which was slow going but I'm started to feel happy with what I've achieved like building dropdown menus and just decluttering and organising everything.
It's nice having the back spare bedroom as a little sitting room.
In the evening Dad, Mandy and I watched Baptiste.
Thursday 7th MarchMission accomplished getting up this morning! Sometimes it's the small victories that matter more.
Had breakfast, got washed and dressed and put on a little bit of makeup.
12-2pm I had my carer. All of the carers in my care team at the moment I get on rally well with and again small things like that make the world of difference.
First of we went to Specsavers to get my glasses adjusted. We then went to Tesco. For the first time I used one of the clip-on wheelchair shopping worries which me and my carer found amusing, especially because of my lack of 3D vision I couldn't tell how far away or close to things the trolly was.
I picked a different colour hair dye to my usual as I'd like to go more red but not bright red. I also got myself a new foundation and restrained myself from adding to my makeup collection. I have plenty of choice at the moment and I especially love the eyeshadow palette I bought a few weeks ago and I get makeup bits in my Birchbox too. I also treated myself to some tulips to brighten up my bedroom.
Back home now and exhausted so just I'm just going to crash out for the rest of the day.
Friday 8th MarchSpent most of the day getting ready.
At 2.30pm I had my assessment with the Adult Autism Team. We went through questions about socialising, sensory hyper/hyposensitivity and then some open questions which we discussed.
It was quite difficult and draining.
I spent the rest of the day crashed out.
It was just Dad and me this evening so we watched a film.
Saturday 9th March(Didn't fill this in on the day so can't remember what I did, oops!)
Sunday 10th MarchNot quite how I planned to end my week.
Woke up late as I went to bed exhausted and forgot to change my alarm so I woke up late but manage to get myself together to get to church.
During worship I went into a prolonged seizure episode and ended up in A&A.
I feel so embarrassed as I get stuck in an anxious cycle of avoiding going to church in case I were to become ill so I avoid going but them I miss it and them days like today where I put my anxiety aside my anxieties just get confirmed.
When Dad was free after his church had finished he came to see me in A&E and we decided it would be best for me to go home as I can get better care there and I have all the meds I need and Dad to keep an eye on me an help me more as he can care for me 1:1 compared to the staff etc.
We got home and Dad got me into bed and gave me my meds and made me a drink and held the drink for me and I went off to sleep.
I spend most of the day sleeping/resting.
In the evening I though it would be a good idea to come and lay on the sofa downstairs and we watched Baptise.