Category: Penguins!

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!

I got some new penguin feet slippers today. They are cool. Also was able to sit in my chair to see CFS team. They are happy I’m getting up and helped me with plan on getting up more. Also recommended wheelchair services as I’m at risk of pressure sores in my chair (not enough padding on my bum). I wore my new penguin shirt and it fits nicely.

No carer this morning. Was annoying as I wanted stuff doing. I only got 3 1/2 hours sleep before waking up this morning at 10am so am tired now. Johan and Esther are going into Durham to see light thingies so Johan cancelled the evening call so I can sleep. Silly body not letting me get to sleep until 6.30am. Being nocturnal is slightly more natural for me but doesn’t work with society. My complete randomness now works even less.

Johan has promised to take photos of light thingies. I’m going to take photos  of loom band bracelets tomorrow when I’ve slept more. Hoping for more time in chair this week 🙂

What a difference one piece of equipment and a bit of time can make 😀

A few weeks ago I was still unable to get out of bed, and rather fed up of being stuck there. A bit after my last blog post, the OT got in touch with some hoist slings! They’re not the ones I wanted, but he didn’t want to leave me any longer and has ordered the right ones for me. These don’t have head support, but otherwise are comfortable.

Once the payback from that taxi journey wore off I got Johan to hoist me into my chair. I’ve been hoisted enough times to figure out how the sling goes (after watching the video for this particular sling) and the hoist controls are simple enough, so though it took a bit the first time Johan figured it out. We stayed on the ramp the first time as I was still not really great with movement from the payback, but managed about 10-15 minutes in my chair (for my future reference, that was 23rd September). Next up was the lunar eclipse in the early hours of the 28th September, and I stayed out for about 15 minutes before going back in (I had a slanket on but it was cold :P). I felt better after that go than the first time, so knew I’d go further the next time.

Unfortunately the care agency changed at the end of September, and the anxiety from that meant I didn’t get out again for a little bit (though I did discover that someone can deliver McDonald’s to my flat, which was awesome and yummy). Been having major issues with the new agency but that’s for tomorrow’s blog post I think. About 10pm on the 11th October I felt okay so it was time for a further outing (we went out at night because that’s my best time and there’s less noise and light to worry about). After discovering the shop and the garage were shut, Johan suggested going into Gateshead so we did! Everywhere was shut but as it was the first time I’d been into town since before they built the new Trinity Square it was amazing to see the difference. I particularly liked the shiny metal tyre on an angle (not the official name).

After discovering that I got no real payback other than a bit of extra tiredness, I knew I was okay for further outings. That week I ended up having horrendous toothache, which was as bad as the nerve pain I get in my face occasionally, only lasting hours rather than a couple of minutes. Johan got over his fear and made me an emergency appointment at a local dentist, and my next trip was to see him (on 15th October). He confirmed that the pain was probably the root of my broken tooth dying (I guessed that from Google) and put a temporary filling in, and referred me to the community dentist as they don’t have the facilities to treat me there (not being able to get out of my chair without a hoist). My teeth are a mess (lots of cavities- turns out stomach acid is not meant to live in your mouth :P, and teeth brushing is kinda important for carers to do) but antibiotics and the filling helped with the pain.

Esther had a friend come to visit that weekend, and as I was jealous from Esther, Johan and Cat visiting a cat café in Newcastle while I was recovering from the dentist, on Monday 19th October I went into Gateshead during the day to go to Nandos with Johan and Cat (Esther had work). We also went to a few shops and it was absolutely amazing to be able sitting up (well, as sitting up as I am with my chair fully tilted and reclined) and while out. Cat is absolutely amazing and awesome and I’m so happy to have met her! That was the longest outing yet, being out for 3 1/2 hours and in my chair an hour longer at home. Somehow just got a bit of extra tiredness from it rather than a massive increase in symptoms so I was happy with how I’ve been coping.

October 25th I felt up to going out again, and as it was a Sunday Johan and I went into Gateshead for a roast dinner at Wetherspoons. It confirmed I had a much smaller appetite than before I got so ill, but was very nommy 🙂 We also found some Gatorade, beef jerky and a Charleston Chew in Tesco, which was nice 😀 We discovered the wheelchair space on one of the bus routes is now a lot smaller than it used to be, so the bus journey home wasn’t great but otherwise it went well. We’ll be avoiding that route in the future (luckily there’s a few others we can get).

Today I went into Newcastle for the first time (other than for hospital visits) in three years. Johan pushed me into Gateshead, then we got the Metro into Newcastle. After a bit of exploring and Johan pointing out to me all the new shops and things that had changed, he treated me to a TGI Fridays and it was very nommy! Afterwards we cancelled the care call (which was meant to be at 5pm for some reason) and went to Primark, where I bought a new bra (as I’ve not worn one in over 3 years and my size has changed dramatically), Harry Potter socks, a penguin shirt and pyjamas. Johan got a new coat, socks and a new belt which he’d been desperate for as his jeans were falling down. Johan can’t cope with Primark by himself but he was okay with me there, so it was awesome 😀 There are a few penguin items I’m wanting to investigate more when we’re next there 🙂 We got the Metro back into Gateshead then Johan pushed me back up the hill to our flat, as he apparently wants the exercise and it meant I didn’t have to deal with the movement of a bus.

It’s been an amazing few weeks, and the only downside is I’ve not been doing as well cognitively, which is partially responsible for the lack of blog posts. I want to get back into the habit though, so I’m rejoining NaBloPoMo for the month. Will set it up properly tomorrow, but for now, a photo from TGI Fridays earlier today 🙂