"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
Author: Danni
The Purple Penguin! 31 year old autistic geek, living in bed with severe ME (myalgic encephalomyelitis). Likes gaming, purple and penguins.
I have been attempting to write a proper blog post the last few days, but it’s not working. Will write random stuff until brain works again.
According to the Hummingbird Foundation ME Scale, I’m currently around 10% for both physical and symptoms, and around 5% for cognitive. That’s definitely an improvement over what it was when I last did it in May, but I think my cognitive score has dropped in the last couple of weeks as my physical went up. Bleh.
Went out on Wednesday to Autism North East social. Was good. Couldn’t get home by Metro as Central station was locked. Had to get taxi. Been too brain brokened since to complain yet.
Upstairs neighbours have been noisy. They have a horse. Horse has sores on it. I feel bad for horse. They also have moped outside my flat door so it’s harder to get me in and out. Not happy. Told council about everything except horse as wasn’t sure it was theirs until today.
Been playing Bejewelled and SimCity Social on computer. Johan borrowing laptop as his computer broken, as was part of replacement. I likes going on computer everyday.
Tried watching telly. Only can watch stuff that requires no thinking like house shows. Had Ice Age film on with Johan but have no idea what it was about, though there was a dinosaur in it.
Carer situation sorted. Am happy with that.
Digestive system feels like it’s trying to kill me since Thursday. Had to take lots of tablets to try and deal. Don’t normally need lots of tablets. Been sleeping lots and not really keeping up with Twitter or Facebook.
Will be happy again when digestive system stops trying to kill me.
I don’t know when I’ll be blogging again. Hopefully soon, but still have other things to do that I’ve been too ill for to do first, like food shopping and complaint about Metro.
This is one of my favourite pony songs at the moment. I like both this version and the original, though as I heard this one first I slightly prefer it. The music video is filmed locally as well, which is a bonus 🙂
We are no longer having the carer we didn’t get on with. The agency has been excellent in trying to sort it out for us, and we met a new carer yesterday (Tuesday). She is very nice, and I’m probably going to be asking for her to come all the time (at the moment she’s only coming occasionally). Both the manager person who came out and the new carer said that we had to be comfortable with whoever comes into our flat, so they understood why we couldn’t have the other carer. It’s nearly sorted (though we don’t know who is coming today) and we’re both feeling better for it.
I’m still going on my computer most days. On Monday I finished the raid with my guild- I’ve now completed normal mode Dragonsoul, which I didn’t think I’d be doing this expansion. It makes me very happy and I’ve had lots of requests for me to raid again 😛 I’ll have to be careful as my health needs to come first, but up to now it’s been good.
Yesterday I slept most of the day. I woke up very nauseous and had to take cyclizine, and it knocked me out. It normally only does so for 2-3 hours, but this time it was most of the day, though I did wake up a couple of times for an hour which meant I got to meet new new carer and the manager person when they came.
I woke up properly when new new carer came for our evening call. She was 15 minutes early, but when Johan said I didn’t like people being early she was happy to wait until 8.30pm and come back. The call went well- Johan taught her how to use the electric toothbrush (I don’t know why, but it confuses everyone), she gave me a bed bath with my wipes (I felt I could trust her) and got me into pyjamas (pink penguin hoodie ones!), brushed and plaited my hair and we had a chat. She also tried to find out who was coming today, but the on call guy forgot to get the sheet. It’ll be okay though.
Although she’s not quite as awesome as lovely ex-carer (who somehow had a personality that fitted in exactly with ours) she is very nice and I can tell she’s doing the job because she cares, rather than just for the money. She also wants to get some of the bath in bed wipes for her brother (who is also disabled- that is how she got into caring) so I gave her the web address.
After she went and I’d rested for a bit, I went on my computer and played some Bejeweled Blitz and then went into World of Warcraft to do Argent Tournament dailies. I am wanting the mounts and the pets for the achievements, and eventually to sell the pets as I think that would be a good income source for me. The only daily I dislike is the commanders jousting one as the birds keep breaking my shield, but since I’m level 85 now I no longer die there so it’s not as bad. I got a Mechanopeep (pet) and a Turbostrider (mount). They are both red. I’m going to look awesome with them 😛
Johan got me settled in bed after I’d finished them, and heated up Penguin and another wheatbag as my feet were blocks of ice. He also gave me painkillers and got me some cheese and apples as I’d slept so much I’d not had a proper meal. Since then I’ve been reading blog posts, writing this one and chatting to Pocket Pennies on Facebook. I’m hoping to get some sleep before the morning call, but since I slept all day I won’t be surprised if I don’t.
We never heard back from the care home, so since it has to be sorted this week we’ve decided to stick with the one near our old flat. It might go better now I can actually spend time in my wheelchair, and they said they can arrange transport if we need it (which we will, as I’ll need to be reclined and tilted in my wheelchair to manage the journey).
Johan really enjoyed the cricket. He was right at the front so got to see everything, and said it was really exciting. It ended in a draw, which is apparently quite unusual for 20Twenty. I want to go when I’m well enough 🙂
I have a couple of events I want to go to. Probably not going to happen but planning is almost as much fun so I pretend I can go for a bit 🙂
Pain and nausea may be pretty bad at the moment but I’m coping with meds and penguins and sleep and I’m happy overall. It is funny- nearly everyone who meets me now says I’m really cheerful. It is very easy to be positive when you don’t have depression. I want Johan to get better as well, but that may take a while. I wish there was a magic cure for depression (and M.E), but until there is one we just do what we can to make life as bearable and as good as possible. I likes being autistic as it means I can be super happy just by having penguins. Johan likes Fluttershy in a similar way 🙂
Things with the new carer aren’t going as well as we hoped. She’s new to caring and makes a lot of assumptions that aren’t true. We also feel very uncomfortable with her in our flat and she gives out far too much information about her other clients, which isn’t good. She’s also really late to every call- over 40 minutes late this morning. I know we said being a bit late was okay, but without contact that’s too much.
We’re going to have to email the care agency to see if we can change main carers as this isn’t working properly. She is so loud she wakes me up when I’m sleeping, which is not good for me. We knew it wouldn’t be the same as with Lovely ex-Carer (who says I should now call her Crazy American now, but I’m not so sure about that) but the other carers we’ve had from this agency have been nicer and easier to deal with.
Johan is also not doing as great, but we think it’s directly related to the new carer. Things got a bit scary yesterday morning as he really wasn’t coping, but I managed to calm him down a bit. Some of it is the change (it was affecting him before it happened) but some of it is not coping with the new carer. As I’ve been asleep he’s had to try and deal with her by himself, and it’s not really been working well.
My sleep has gotten a little out of it’s normal pattern. The new carer being so loud as to wake me up isn’t helping, as it made me overtired and made it even harder to get to sleep. Bleh. I’m hoping to nap soon to try and catch up as I feel exhausted.
I’ve managed going in the living room every day for the past few days 😀 I may be fully tilted and reclined in my wheelchair, but it means I’ve been able to go on my computer and play some games. I also went into the living room for Lovely ex-Carer’s party after she’d finished work. We watched My Little Pony: Friendship is Magic (she does like it :P) and had chocolate cake. It was awesome. We’re already missing her.
This blog (and my old one) has moved servers. Since J & D Hosting is closing down, Johan has found a VPS and he’s hosting my blogs on there as I’m not well enough to do the management bit now. He didn’t know originally, but is learning 🙂 There were a few minor issues but it looks like everything is working okay now.
Johan has gone to watch some cricket. He’s at Durham to watch them play against Lancashire (he wants Durham to win). It’s 20Twenty so only lasts about 3 hours, which is good. I’m probably going to nap so will be okay. He’s not been to see cricket live before so I hope he enjoys it. He picked out his seat and the photo he posted on twitter shows he picked well 🙂
I upset my sisters. I have very low tolerance for intolerance of any kind (which is a big failing of mine), especially from people who should know better. They didn’t understand that generalising about a group of people on the grounds of race is racist. I shouldn’t have said they were publicly but I was very frustrated. Some friends tried to explain better but were attacked by Becca, who also wrote a very upsetting comment about us needing to get off the computer and get a life (all of us are ill in various ways and degrees, and being on the computer helps).
That was related to the horse. I’m not sure if it’s still there (I haven’t heard it since Friday) but Lovely ex-Carer has seen some people there looking after it and it has/had water and stuff so I’m less worried now. It certainly looks happy and in good condition (I went to see it on Friday morning) so while it’s random, it’s not too worrying.
I think I’m going to nap now. I’m liking being able to get out of bed, but stuff is very tiring.
Okay, being realistic Leeds is probably a bit too much at the moment. I will stick to travelling locally until I can do that reliably and without payback before trying to travel further. It was fun planning though and means I have an idea where to stay and what trains to get for when I am well enough to go 🙂
Wednesday I managed 4 hours sitting in my wheelchair in the living room, and was fine. It was tilted and reclined, but still I was out of bed for 4 hours! I was even able to do a proper raid with my guild (Dragon Soul) for the first time in months which was awesome. They were very understanding of me when I made mistakes and stuff, and we got up to (but haven’t beaten yet) Spine. I hope to go to the continuation on Monday if I’m well enough 🙂
Thursday I had a wheelchair assessment with the district nurse. We thought the appointment came through a bit quick and it turns out she only does basic attendant chairs, so she can’t help me. She took my measurements though and has referred me to the proper team to try and get me a suitable chair. She’s put that I need proper support and a reclining chair, and what chair I have now so it should be good. I’m hoping to go to equipment services as they have all the different types of chair there and it would be easier to find something suitable. We’ve been warned that it will take a while but it will be much better in the long run.
The 15 minute appointment completely wore me out. Turns out talking about stuff that requires thinking is still one of my most exhausting things. I think it goes with physically being better but not so much cognitively. I was hungry though so had green Thai curry for lunch. I managed to eat it myself with a fork! I used a plastic fork (purple, of course) with some tubing on the handle to make it easier to grip, and it worked! My hand was spasming a bit but I just kept swapping hands and rested every mouthful, but I fed myself with a fork! Yay independence! 😀
I had to have a nap not long after. Johan went to the Autism North East committee meeting. He promised to be home before Lovely Carer was due but wasn’t. Luckily she waited around (she thought something was up as we normally let her know if Johan is going to be out). I panicked and felt completely helpless as I could hear her outside but was unable to go let her in. It’s shown it’s even more important to get a key safe so that carers can let themselves in. Luckily Lovely Carer and Johan calmed me down, then Lovely Carer helped me into pyjamas (I had been wearing a dress) then used the no rinse shampoo to wash my hair. I think she also washed some dishes.
I’m on my computer again now. I’ve played some Bejewelled and now I’m going to do Darkmoon Faire dailies in World of Warcraft. Then I think it will be back to bed as it’s quite late already. I’ve covered the ends of my armrests with penguin socks as they were slightly torn and the socks I can’t wear as they’re too small. I think they’re cute 🙂
The cleaner didn’t turn up on Wednesday. I am not happy with this as we didn’t get any warning. I sent an email but haven’t had a response, so we might need to phone. Lovely Carer did some of the cleaning the cleaner was meant to do but she doesn’t have enough time to do the bigger jobs like mopping floors and stuff.
We have finally had our cooker fitted! Once we found an electrician and Johan phoned them, they could come out the same day (Wednesday) and it only took about 10 minutes to do. It means I can have a roast dinner when I’ve done the shopping. It was so quick and easy and not too expensive (£45) that I feel a bit silly it took so long. It’s sorted now though 🙂
I’m happy that physically I’m still improving a bit and can do a bit more for myself. Hopefully this will continue.
There is a horse in the field next to our flat. This is not normal. If it’s still there in the morning we’ll contact the RSPCA as we don’t think it should be there. I want to go see it first though as I love horses and miss seeing them now I’m in the middle of Gateshead (at our old flat we were less than 5 minutes from the nearest field with horses, and people with a horse and trap used to go by pretty regularly).
Johan has fallen asleep on the sofa. He has not been having a good couple of nights. I wish I could help but I don’t know how 🙁
Latent Existence has started watching My Little Pony: Friendship is Magic. I think he’s starting to like it 😀 It is an awesome television show for kids and adults. I’ve also given Lovely Carer the link to the episodes as I think she will like it as well. I’m also thinking of watching it again- the episodes are on (US) Netflix so it’s easy.
Tomorrow we are meeting the carer who is replacing Lovely Carer when she comes tomorrow morning. I hope she’s nice. With Lovely Carer it’s been so easy as she understands me so well almost intuitively, but I can’t expect that from the new person so will probably have to explain how to do things and about ME and stuff. That’s going to be harder. Hopefully it will work out in the long run though 🙂
The title is what I’m able to say without massive amounts of concentration. My brain is a bit fuzzy so English is a tad hard 😛
Physically I am doing good today. I’ve been practising my sitting up and haven’t passed out or gotten silly dizzy or anything like that. My pain levels are bearable with medication (I’m trying to take just one tramadol again at the moment). I can transfer to the commode without falling off, which had been rather difficult the last few days. Yay 🙂
I’m very dozy and fuzzy and tired, but I was awake about 28 hours before getting to sleep around midnight/half past midnight. I woke up sometime after 10am so I’ve slept, just need a bit more to catch up with the bit I missed. Staying awake all night and all day happens sometimes so I don’t worry about it, I just try to get plenty of rest when I can sleep again.
Lovely carer is leaving the care agency :'( She is a good friend now so I will still see her, but it means I’m going to have a different main carer. I hope whoever it is is nice and can understand us. I am planning a party for lovely carer on Friday as it’s her last day and we’re her last call 🙂
Vicky was here until yesterday, and it was nice her being here. We spent Sunday night talking until silly o’clock in the morning as we lost track of time 🙂 We used to do that a lot and so it was good.
Johan is currently on my bed next to me, giving me the occasional squish and making me feel safe and happy. It is nice, even if my spoken English is a bit disappeared.
I am sending Johan to the cricket on Sunday. We are now about 25 minutes from Durham Cricket Club, so we have been intending to go since we moved. I’m not well enough yet, but Johan is going to see Durham beat Lancashire (I did put playing against but Johan made me fix it). It is Twenty20 so it’s very fast and only lasts 3 hours. I will see if a sibling can sit with me for it, but if not I should manage if everything is sorted beforehand. I could always try sleeping 😛
I am wanting to go to Leeds. It probably won’t happen this week, but I’m going to build up to it. New wheelchair means it’s just as easy as travelling to South Shields (at least until we reach Leeds train station) and I want to try my mum-in-law’s cooking (I’m not sure if she knows this yet so we should probably tell her :P). Johan’s family are really nice and I feel very at home with them. I think if I plan it well we should manage it okay 🙂
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I have looked up the travelling to Leeds and if money is okay I should be able to manage it, with travelling with my wheelchair reclined (the Transpennine Express trains have wheelchair users in a separate bit- normally I dislike the segregation but it does mean there’s plenty of space) and a hotel right next to the station. We probably won’t do anything other than see Johan’s family while there, and I can rest lots so it will be good.
As my brain is being silly I’m not really keeping up with Twitter or Facebook, but that is okay. We are thinking of taking another week of respite in August so Johan can go see his friends at this open house thing. My social worker has found a care home so Johan just needs to check it’s suitable. We were originally going to stick with the same one as last time but the travel there is harder for me than travelling to Leeds so not the best idea ever.
Otherwise I’m just playing Bejewelled and Draw Something every so often, reading and immediately forgetting blog posts, and having lots of cuddles in bed. I like being able to have cuddles 🙂 I’m definitely improving, even if only a little bit.
