"I find penguins at present the only comfort in life. One feels everything in the world so sympathetically ridiculous; one can't be angry when one looks at a penguin." – John Ruskin
Anxiety is ebil. Not being able to sleep at night because scared someone will break in or have a violent fight or other silly things that aren’t likely but my brain insists will happen when I’m asleep. I stayed awake for the morning carer and no-one showed up. It was about 12pm before I managed to fall asleep.
Being asleep most of the day means I’ve done nothing productive. Pain levels have been higher than normal and I’m not sure why. I need to do a food shop but it requires more brain power than I have right now. Decided I’m not getting out of bed until Friday and we have a plan for if I’m still hurting so much then.
I’m getting a bit obsessed with Neko Atsume. My current strategy is to buy the most expensive items first. I’m starting to get lots of mementos which is awesome 🙂
Johan is helping by sitting in my room, dosing me up on painkillers and heating penguins. We found a hole in Nicky’s wing so I’ve bought her a new body and Patricia (Johan’s penguin) is helping in the meantime. I’ve noticed it’s the newer penguins developing holes which is concerning. I hope the new one lasts longer. I also took the opportunity to buy noise cancelling headphones, a second Rainbow Loom and 2100 loom bands for 46p. The advantage of getting into it late 🙂
I’m ho
I’m hoping tomorrow will be better. At least there are penguins 🙂
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 🙂
The good: Blizzcon started today, I had a nice care worker this evening, and I finally have my World of Warcraft posters up.
The bad: I slept most of the day, yet needed cyclizine so I need to sleep again now, meaning I’ll miss the rest of today’s Blizzcon stream. At least I saw the opening ceremony and all excited for the rest 😀
Take care. I have my Murlocs and Brightwing watching over me tonight with the penguins.
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.
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 🙂
And I’m lying in my bed like always. Have had the blind up and the window open a few times though 🙂
My sleeping pattern has been non-existent recently, but I’m hoping to get it fixed soon. Missed the evening carer for over a week by being asleep so not had any big things done. I woke up at 6am today so I’m hoping to manage to stay awake for the evening call, but I’m already getting tired and it’s only early afternoon. Silly body.
The big news I have is I’ve got a date for my hoist installation! It’s being installed the 2nd September. Johan had already planned to go to Insomnia 55 the last weekend in August so we were already planning to have me in the care home, so it’s worked out really well. I’m really excited at the prospect of getting out of bed without worrying about how I’m going to get back in 😛
Johan’s day service thing is going well. He’s really enjoying it, and it’s nice for him to have something to do that’s not looking after me. We’ve not sorted out care for me yet, so I’ve been mostly sleeping while he’s there (cause of broken sleeping pattern, along with needing cyclizine a lot) but they’ll bring him back in an emergency. The new care agency isn’t starting until the end of September now, so hopefully we’ll get things sorted before then, as I’ll need to be reassessed due to having the hoist anyway (most agencies insist on two carers for hoisting).
My ability to cope with sensory stuff is improving, to the point where I’m actually thinking my room is dark sometimes 😛 Have bought a light shade for my ceiling light to see if I can cope with having it on (main problem at the moment is it shining in my eyes above my bed). If not then I’ll get another lamp to put somewhere else in the room to increase the light levels when I can cope with it. Apart from 30 minutes in the morning, my bedroom doesn’t get direct sunlight and is sheltered by trees so it never gets that bright in here even with the blind up (my blind only reduces the light rather than blocking it).
Everyone except me is going on holiday 😛 Sammie went on holiday last week, Johan’s planning on going to Insomnia 55 as I said earlier, and Esther is currently away. I was a tiny bit grumpy about it when I realised, but now I’m looking forward to the chance to have a bath and get out of bed while I’m in the care home, and after I get home getting out of bed and maybe having a shower. It’s weird not having Esther here, but I’m glad she’s had the chance to get away. One day I’ll be well enough to go on holiday myself 🙂
I’ve managed to read a few books the last couple of weeks, which has meant I’ve caught up to where I’m meant to be for reading 50 this year. Mostly children’s books, but a couple of adult ones a well. I’m managing my computer several times a week so I’m going to start planning what I want to do on there when I get on, as sometimes I’m on but not really doing anything and then I kick myself when I’ve come off for not doing what I wanted. World of Warcraft is still my main game, and I’ve been working on reputations in Warlords and pet battles mostly.
I also installed Windows 10 on my computer and a different rom on my tablet. Windows 10 seems to be working well for me, as I mostly use my computer for games and web stuff now and they all work fine. I like the new start menu (finally removed Start 8) and it seems to run faster. My new rom for my tablet is CyanogenMod based, so I’m able to customise it more and it no longer has TouchWiz. Still got to work on it but it’s running faster and I’m on 5.1, which isn’t available officially yet.
Apart from my nausea and digestion issues (which are getting worse) I’ve been mostly stable recently. Still occasionally do too much and end up with payback, but I’ve mostly figured out my limits. The digestion issues are not good though, and I’ve still not managed to see my GP (with Johan being out 3 times a week and me being asleep during the day it’s been hard to arrange). Cyclizine is amazing even if it does put me to sleep, as it means I can at least keep my food down. My portion sizes are decreasing as I get full after less food now, so I’m a bit worried about weight loss (it’s hard to tell when I can’t be weighed, but my bones in my bum and hips are sticking out more). I’m going to buy some meal replacement bars since milkshakes are really not agreeing with me right now.
Otherwise I’ve just been doing normal stuff. Playing silly games on my tablet, bossing Johan around, arguing about wanting to do things for myself 😛 I did get new bodies for Nicky and Penelope (we used penguin magic to transfer them) as their old bodies were dropping bits everywhere. Penguin is now demanding a new body but as they don’t sell his anymore it’s being a bit harder to track one down. I also got a new blue Trabasack to use when I’m on puter or in my wheelchair (which will be happening soon! Yay!). I discovered part of the reason I struggled with being on my computer was the weight of the keyboard, so I bought a lightweight one with purple leds (as it can be dark in here) and it’s making it much easier.
