Tuesday 9 July 2019

One Second Every Day: July - Week 1 // 2019

Monday 1st July

My carer was amazing today. We're still without hot water but my carer kept filling the kettle (we brought the kettle upstairs) so I could have a very shallow bath and we got my hair shampooed (we used leave in condition so I wasn't rinsing my hair in sudsy water and I got a wash and I felt much better emotionally for getting a wash and having clean hair.
Mid blowdrying my hair I had several seizures and I came round but then went unconscious again and had a few more seizures and my carer felt with it really well. I know her quite well but she's never had to deal with a seizure like that before. We made the decision to take some diazepam to try and prevent any more episodes, especially as I'd be on my own until Dad got home from work around 5.30pm.
My carer made me a coffee, a juice and a sandwich so I could stay safe of the sofa and I let CareLink know so they could keep an keep an eye out.
I spent the afternoon resting and watching TV and I finished off a blog post about disabled parking.
I've now just done a bit of college work but it's hitting bedtime. I'm pretty sure I'm going to need an extension on my deadline.
I'm now just going to get into my pj's and settle down to sleep and hope I get off okay and sleep well.

Tuesday 2nd July

The day wasn't too exciting. This evening I went to the autism café group and I took one of my Bluebird carers with me. I was pretty anxious. The theme was 'Hobbies' this month. One of the members of staff helped me have a conversation with someone else who was new. It was quite noisy and busy and I got a bit overwhelmed and my myoclonic seizures started up so me and my carer spent a bit of time in the quiet room; me laid on the floor (it's a seizure/POTS things - you end up randomly laying down on floors inc the middle of shops).

The café finished early and it was nice to leave and get some quiet. As I had some time left with my carer we went upstairs and she painted my nails for me which I enjoyed as I like having pretty nails but it actually helped me to calm down too.
The rest of the eying I just spent resting.

Wednesday 3rd July

Had an appt at 12pm. Came home and chilled out; watched TV, did some letter writing then had a nap. Woke up and decided to get because a) I didn't want to not sleep tonight an b) I needed to take my tablets and have something to eat.

I didn't do much for the rest of the day.

Thursday 4th July

Had Bluebird as usual and I'm getting to know my new carer. I then  had a little rest and a snack after she left and I called my GP Practise to double check I had an appointment which I did.
I saw the nurse about my asthma which has been worse and as well as my inhalers she's put me on some tablets and I'll go back again to see if they've helped or not.
I then came home an had another rest (trying to remember my pacing though still have to work on it fully and I need to read a bit more of Dr Myhill's and my other 'Guide to Living with M.E.' book).
You may be thinking, reading this why I res so much, well, for me, it's a bit part of managing my symptoms. If I didn't rest so much I would just crash and end up in bed for a week unable to do very little and even with all this rest I still really struggle and end up spending time in bed.
I've managed to achieve getting a bunch of my distance learning course done and make a start on my communication cards but now my brain had filled with treacle. I'm now in bed ready to settle down for the rest of the evening and on a side note I must add how much I love my electric bed elevator!

Friday 5th July

Haven't done much today. Done my usual pacing between resting, physio, watching TV, blogging stuff and college work.
I've really enjoyed this evening playing a couple of games of Rumikub with Dad. It would be nice if we could do more of that, hopefully that can happen when the summer holidays come.
I'm now just chilling then I'm going to wash my face, get into my pj's and settle down to bed.

Saturday 6th July

It was a tired kind of day. Dad said to have a sleep this afternoon which I did and I was going to have a bath but I wasn't feeling up to it.
This evening it was just Dad and I so was watched a film called 'American Sniper' which was good but the ending was quite sad. It's a film I'd recommend.
By the time the film had finished it was time to go to bed.

Sunday 7th July

Had a nice quiet morning then in the afternoon I went out to Bring Garden Centre and I bought my first Christmas present! I know it's far too early but I saw it and it was just perfect for my friend.
Got home and was exhausted so just rested for the rest of the day but managed to get some college work done.

Video Description

Title page for the month saying 'July' decorated with summer themed stickers
Monday: Flop poking his head out the cage door
Tuesday: My laptop and an open text book
Wednesday: Spraying a puff of inhaler
Thursday: Photograph of GP waiting atrium
Friday: Dad and I playing Rhumikub and Dad laying down some tiles
Saturday: Cutting out some text on paper
Sunday: Photograph of a letter I've put together with a sticker-by-number picture, coffee sachets, a word puzzle and other bits.