Was having an okay day until the evening care worker arrived at 4.15pm for my 5.30pm call with no advance notice. Was on her rota for 4.30pm. Ended up having a meltdown which is horrible and scary and exhausting. Will sleep now and try and figure out how stuff later.
Category: M.E.
Bye Bye Day
Danni nauseous. Danni take cyclizine. Cyclizine make Danni zonk. Danni no wake up for many hours. Day disappears. Try again tomorrow?
Adventures in Penguin Shopping
Went out today! First went into Gateshead and got my head shaved at a barbershop (they initially said they couldn’t do me until Johan explained what I wanted). I now have basically no hair and it feels weird but it’ll be nice to not have to worry about washing it for a while.
I felt okay and we were a bit hungry so decided to go into Newcastle for food. We went to Wagamama as I’d never been there before and Johan likes it. I had dumplings which were very nice. Getting the Metro was difficult as it was as everyone was travelling to see the Newcastle football match, but we managed to get me on.
We went to Grainger Market next, where Johan failed to find any games in the retro gaming shop and I found a penguin cupcake in French Oven. I’m still full from lunch so will have to eat it later. Next was Geek Retreat which was very crowded. I think I’ll go back when there’s less people as it was hard to see what was there, but I had a nice hot chocolate.
Looked in Forbidden Planet and then Travelling Man. I couldn’t find anything I wanted in Forbidden Planet but bought Pandemic from Travelling Man as I’ve been interested in it for a while and we were wanting a game that works well with two players. Getting around these small shops is hard in my tank 😛
We were starting to think about home, but the Newcastle match had just finished and I knew the Metro would be packed. I also had misplaced my gloves and as the temperature was now below freezing asked to go to Primark to buy some more. On the way Johan looked in PC World for a keyboard (he couldn’t find the one be wanted) and I got confused by the pile of monitors in the middle of the aisle in a shop which is otherwise easy to get around (though the displays are too high for a wheelchair user).
In Primark I found some really big penguin thermal socks, and then two different pairs of penguin gloves. We looked at the warm slippers but couldn’t find any in my size. While doing so I managed to knock the penguin cushion under my legs so I couldn’t feel it, and thought I’d dropped it. We ended up backtracking and Johan asked the staff before he checked and found it. Near the counter I spied a multipack of normal penguin socks, so bought them as well. While helping me sort things out Johan found the gloves I’d already been wearing under the Trabasack but I’d bought penguin stuff so it was worth it. I was very tired by now so we went home.
It’s been a really good day. I probably overdid it but it’ll have been worth it. The most exhausting thing wasn’t being in my chair and it, but trying to communicate as I had no voice and typing was difficult while moving. I think if I go out when I can’t speak again I should take a Bluetooth keyboard as it’ll make typing much easier.
Tomorrow if I feel okay I want to go on my computer as I’ve not been on since fixing my tablet and I think it’s been over a week since I was on to do fun stuff. I also need to start finalising my Christmas shopping lists. Before then though I think I need to sleep 😛
Music is Good
The original plan was to go until Newcastle to see Becca but she wasn’t able to make it so as I’m tired we’re going out tomorrow instead. Hopefully I’ll get more than the 1 1/2 hours of sleep I managed this morning.
I’ve mostly been playing the game Loop on my tablet today. It’s very addictive and good for when I don’t have much brain power as I find it easy to work out.
When everyone was out I put the music on the telly really loud* as I couldn’t disturb anyone. I was singing along and flapping and my heart rate went over 150bpm. Whoops. Guess that’s my exercise for the week and I hope I don’t get payback. I wouldn’t have known if it weren’t for the FitBit as I felt okay at the time. I also made a couple of loom band bracelets to try some new patterns. I’m managing intermediate level stuff now 🙂
Hoping tomorrow I’ll be awake enough to out as I really want to get my hair shaved off. There’s a barbers in Gateshead that looks good so will see if they’re up to the challenge of managing it with me in my chair. I was thinking of Newcastle but maybe on a Saturday a few weeks before Christmas isn’t the best time. I’ll go into Newcastle on a weekday to see Fenwick’s window 🙂 I’m tired enough now to sleep through to morning if my brain will let me. Nicky’s new body is so soft and fluffy that I love cuddling them.
*Really loud = volume 20 instead of volume 15.
Amazon Prime Now
Slept during the day so have done nothing really productive, waking up about quarter past eleven this evening. Tomorrow I’m going out so I really need to fix this.
This morning I wanted toast for breakfast for breakfast, and we had no bread. As Johan was going out he couldn’t go to the shop, so I used the new Amazon Prime Now delivery service to buy some (along with milk, chocolate, biscuits, tracksuit bottoms and a FitBit Charge HR). I placed the order at 9.14am and it arrived at 9.37am. That is the ultimate in impulse shopping 😛 I’m unlikely to use the within the hour delivery unless it’s a real emergency as it’s £6.99, but if they have what I want then I might use the 2 hour same day delivery as that doesn’t cost any extra as I’m already on Prime.
The FitBit is interesting. For some reason it was cheaper on Prime Now than on Amazon’s normal site (£69.99 compared to £124 for the one I wanted). I’ve not figured out how to get it to show my heart rate on my tablet in real time yet, as that’s what I mostly want it for, but it has been interesting seeing how simple tasks like rolling over and eating raise my heart rate. It did think I was asleep when I was just resting this morning but luckily it was easy to correct. When I did fall asleep it seemed to be pretty accurate, also realising when I woke up for Johan coming in. I’m going to class any time sat up as exercise to try and find out how it affects my heart rate.
It was a nice carer this morning. She came on time and is fed up of the agency missing calls and stuff. She got me an email address so I should be able to email them about things now. I’ll probably set up a template for asking where the carer is so if they don’t turn up I can just send an email without worrying about how to write it. The carer made me some nommy toast, got me dressed in comfy clothes (including my new tracksuit bottoms, which are too short but otherwise fit) and is going to ask the agency to put me on her rota for every morning except her day off. This would be great for us as we really like her and she’s one of only two carers I feel safe dealing with by myself.
The evening carer turned up but I had sleep paralysis so wasn’t able to tell her I was awake. I was very tired anyway as I’d not been back to sleep for that long. I don’t think Johan spoke to her.
I’m excited about going out tomorrow. The pain has eased off a little bit- not quite back to normal but more bearable. A lot of it was digestive issues because I ate too much fruit and veg. I need to remember they don’t agree with me and to only have small amounts, even though they’re so nice. I’m hoping to get some sleep before I go out, even if it’s just while Johan is at the day service thingie. If I can get some more sleep tonight though I’d be very happy. Hopefully with having had a decent carer it’ll be easier to sleep.
Nicky’s new body has arrived and I’ll be using penguin magic to transfer them into their new body. I think Patricia is missing Johan a bit 🙂 I also got my noise cancelling headphones which are weird but do seem to work for blocking out noise. I’ll be testing them properly tomorrow when I go out. Squee!