Category: Computers

Danni

Bumpity Bump

Autism, Computers, Danni, M.E., My Little Pony: Friendship is Magic, Physical Disability, Real Life

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 🙂

https://twitter.com/JohnUK89/status/221949618517315585

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.

Danni

Wheelchair Fun

Autism, Computers, Danni, Gaming, M.E., Mental Health, My Little Pony: Friendship is Magic, Physical Disability, Real Life, World of Warcraft

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 🙂

Danni

Noise is Bad

Autism, Computers, Danni, Gaming, M.E., Penguins!, Physical Disability, Real Life

The last couple of days we have had workmen in to sort out our new bathroom. It’s mostly done- the shower has been moved, as has the sink so there’s now more room in there and it will mean it’s easier for a carer to wash me. The toilet has also been moved back, but not quite far enough as when I tried to sit on it, I flopped so far back I nearly fell off and Johan had to rescue me. There’s just the floor to do we think. The new pump is noisy, but nowhere near as loud as the old one and I can cope with it fine with my door shut, and should manage in the shower okay with ear plugs, so that will be good. Johan can cope with it okay without anything 🙂

Johan has contacted the OT about the toilet, and also about the shower seat I’ll need (the closer to horizontal the better) and about a full assessment for things that will help me. I don’t mind buying the stuff I need if necessary (I’ve already bought loads that apparently could have been provided for me) but it would be helpful to know what would help.

I tried the no rinse shampoo. It’s brilliant for in between full washes, and makes my hair a lot cleaner than normal dry shampoo. I also bought some bath in bed wipes which are awesome- they contain moisturiser and one wipe does my entire body, so the pack of 8 for 99p is really good value. Much easier for my carer as well 🙂

I’d had to buy a new shampoo basin as my old one broke (the tube to drain it fell off) and went for the deluxe version instead of the cheapest one like last time. It’s well worth the extra £5 (£19 instead of £14, excluding VAT as I don’t pay it). It has an inbuilt cushion that I can rest my head on so I don’t have to hold it up myself, making it much easier. It feels a lot more robust and my carer said it was easier to wash my hair in it. All good for when I’m bedbound and until I get my shower seat 🙂

I’ve been doing really badly during the day- lots of pain, nausea, fatigue, brain fog, muscle spasms and such, but when night time comes I’m doing much better and can even watch stuff on Netflix. This is a problem as Johan needs to sleep at night, and really I do as well but I want to use my better time.

The workmen being in has been horrible, though I’ve just about coped using a combination of ear plugs, ear defenders and music. The hardest bits were when Johan was out (as I couldn’t block the workmen out completely in case they needed something) and when I had to concentrate on what someone was saying.

The new cleaner came Wednesday lunchtime, but as the workmen were here she couldn’t do anything. She’ll be back next week, as Wednesday will be our regular day. As she’ll be coming 2 hours a week hopefully I can look forward to a nice clean flat 🙂

In the meantime, the untidiness of my bedroom is really getting me down. Since I rarely leave it, and I’m unable to do any tidying myself (if I tried not only would Johan yell at me but I’d make myself really ill) I’m relying on other people, and Johan doesn’t seem to get how much it’s depressing me. He has promised that when lovely carer comes in the morning he’ll do some tidying in here with him. I hope he keeps to that. I know how I want my room to be and it will make it easier for Johan as well as make it more bearable for me.

I got my communication cards and my Media Mount for my Trabasack. The communication cards are awesome- just the right size, and on a keyring so I’ll be able to attach them to my Trabasack. I’m thinking of getting one of those stretchy keyrings to attach it with. The Media Mount uses velcro to stick to the surface of my Trabasack. I’ve only been using it to hold my tablet in place up to now, but it can be used in lots of different ways. I bought one but somehow ended up with two- going to try putting one on top of the other to see how that works 😛

I’m still hoping to get to the prom next week. I’m not well enough right now, but I’m going to rest and rest and rest and see if I can get there. I’ve just ordered a tiara as I really want to wear one, but the estimated delivery date is saying it might arrive afterwards. Not good 🙁 I need Johan to go into the college and sort out my locker, so he can buy the prom tickets at the same time. I thought I had no money left but it turns out I’m doing better than I thought I was- must have doubled up on a bill or something.

Johan picked up our clothes from Asda Wednesday evening. It turns out they’d been delivered to the store on the 6th June (estimated date 8th June) but apart from a note that one item was out of stock, they forgot to send us a text message or email to say they were ready for pick up. I was really brave and phoned up to ask what was happening. The guy on the phone had to ask me to repeat a few things as some of the sentences I was coming out with didn’t make any sense, and I had to ask him to repeat things a few times as I couldn’t hear properly, but I got there in the end. I even arranged a refund for the delivery cost of my trousers as they were supposed to be next day delivery but took three days. Using the phone is slowly getting easier, but it’s still not reliable.

I got a purple tropical sundress, a white long sleeve top (to wear under other tops/dresses when it’s a bit cooler), a pink skirt, and a 2 set bikini. It’s been years since I last had a bikini but I want to try hydrotherapy at some point and my swimming costume will be massive on me now. I’ve also discovered I’m a size 12 now, though I’ve bought a few items in a size 14 they shouldn’t be too loose hopefully.

I also bought Johan two pairs of black jeans, a black t-shirt and some socks as he needs them. Apparently the black jeans are his favourite type, as they feel really soft. That should be good for him 🙂

I’m finally accepting that I’m probably not going improve a lot any time soon. I’ve been mostly bedbound for nearly a year now, having pushed my way through college but damaging my health to do it. I’ve been unable to walk for about 18 months. I’ve reached the point now where I’ve stopped deteriorating, instead I’m bouncing up and down the severe end of the functioning scale.

Even at my best I can’t sit up unsupported for more than a minute or two, can’t hold a pen or cutlery, can’t answer questions for more than a few minutes (thanks, autism), can’t dress myself independently, can’t crawl or self propel my wheelchair, can’t wash myself. I often need to be fed as I can’t manage it myself. If I can get in my wheelchair at all I need it tilted and slightly reclined to be able to manage it. Johan has to help me with most transfers. I lose speech often. I struggle to follow conversations even in text, which is normally my strongest method.

At my worst I have to lie completely flat in a dark, silent room, with no interaction with anyone, and struggle to even roll over, or chew and swallow food. Pain is unbearable and even the smallest thing can be too much. Luckily I’ve only had two relapses that have been that bad, with the one in April not being as bad as the one in December.

I have things I like doing. I like reading Twitter, as I can dip in and out whenever I can and the short tweets are easy to follow. I like reading blog posts- it doesn’t matter if I understand them or not. I wish I could comment more on the blogs I read but that is often too difficult. I play Draw Something and Bejeweled Blitz with/against my friends. I listen to My Little Pony: Friendship is Magic music. I cuddle Penguin and Katie. I stim using my dummies (sucking, smelling, rubbing on my face, fiddling between my fingers). I chat to Johan or lovely carer. When I can I like going into the living room and watching television or playing World of Warcraft. I go out in my wheelchair.

Accepting that I’m probably going to be at this level for a while means I can adapt. I’m asking the OT for more equipment to help me manage. I can try and make goals that I can accomplish at this level. I can look into activities that I can do now, rather than ones that require me to have better control over my hands. I can try and stop overdoing it with things that don’t matter (Johan is trying to help with this).

The interaction between M.E. and autism makes life interesting. Not being able to have short bursts of activity with rests in between as I struggle with transitions, instead I have longer periods of activity with longer rests, which isn’t as good but works better for me. Not being able to hold things properly, I hook stuff around my hand or finger instead, or use my arms to hold things. Accepting that I just “phase out” of conversations and that everyone who talks to me is either aware of this or has it explained to them when it happens. Laughing about stuff. Celebrating everything I can do. Taking joy out of small things like colour changing light and penguins. I’m still happy.

Edit: Realised this blog post didn’t have a name. That is wrong so I’ve fixed 😛

Danni

Whee!

Autism, Computers, Danni, M.E., Physical Disability, Real Life
image
Danni in New Wheelchair

I won that wheelchair last week for £95 including postage. It arrived Monday morning. It is a tilt in space and reclining self propel wheelchair, and it is much better for me than the old one. I am too tall for it really, but we use a pillow on the headrest and I don’t mind my legs sticking out a bit so it is fine. Went to the local shop and other than really needing a hat as the sun was so bright even with sunglasses (as I was tilted back a bit it was more in my eyes than it otherwise would have been) it went really well. I won’t be able to have it fully reclined when travelling on public transport as it makes it really long, but I can have it tilted and a little bit reclined on there which will help a lot. As I’m tilted I also don’t need the harness to hold me up with it 🙂

New care agency is still working really well. My main carer (Johan is calling her Lovely Carer) is absolutely brilliant. She does have a tendency to stay over time, but it feels almost like having a friend over than a carer (though she does help me with my personal care and any tasks we need her to do). She was off on Friday as she had a funeral to go to and it was her weekend off, so we got three other carers then (that is apparently too many and is unusual- I still think 4 in one week is much better than 15…). All three of them were really nice and lovely and talked to me like a human being, rather than being patronising. I did miss a couple of times as my sleeping pattern threw itself out (one night of insomnia where I didn’t get to sleep until 7am) but the carer then (the manager) was just worried that it was because it was someone I didn’t know. When I did meet her in the evening she was really nice and we were able to tell her how happy we are with things 🙂

Sunday night we did both have a bit of a meltdown due to another new carer coming when Johan was meant to be raiding. Was silly in the end as the raid didn’t happen and the carer was lovely, it was just I didn’t want to have to deal with a completely new person by myself. That was one of the problems with the old agency- there were constantly new carers that I didn’t know so neither of us were comfortable with it. As the new agency thinks 4 carers in a week is too many I know things are going to be better. This week we’re only seeing Lovely Carer as she comes both morning and evening and is working this week. She seemed rather excited about that (she seems to like coming here as much as we like her coming 🙂 ).

Meggy and Martin (my youngest siblings) came to visit last Tuesday, and also cleaned most of the kitchen and living room for us, which was very nice of them. Meggy has said she wants to come back this week to finish it off. This is not a problem with us. She’s very good at it 🙂 Johan was terrified to begin with as he felt really guilty but he was okay after she got here and when she actually did it.

To also help, we finally have the council cleaners almost sorted! We’ll be having a cleaner in 2 hours a week to do the main cleaning jobs, and they should be starting next week some time. We’re just waiting for them to tell us when it’ll be. This is a paid service, but at £10.41 an hour it will be well worth it for Johan to stop worrying and for me to be able to have the place clean how I want it. I can pretend it’s because we’re really posh and stuff (my DLA covers it as it’s because of my disability I can’t do it myself). Lovely carer can also do smaller jobs inbetween (washing a few dishes, putting a load of washing in) so between the two services it will work well.

Last week I also sent an email in the middle of the night about the neighbours upstairs while they were making a massive amount of noise fighting. Johan was terrified lying on my bed next to me, but I got angry instead for once, so sent the email. The local estate officer is coming out on Wednesday to discuss this. We’re not exactly wanting to complain, we just want to do what’s necessary to make it stop (though that might require a complaint). We have a simple way of judging if it’s just oversensitivity or actual loud noise- if I can still hear it with my ear defenders on, it’s very loud (and the stuff we can’t tolerate is arguments, stomping, throwing things and slamming doors, rather than normal chatting, television watching or listening to music, though we don’t like the drilling at midnight either).

I’m still doing pretty well. Been on my computer (in new chair!) and though I didn’t play World of Warcraft I did get a message sent in the Ayme forums, which took about 2 hours for me to write because it is very hard work for me. I don’t know why because writing to people on forums used to be easy. I also went on Facebook for a bit.

On Thursday I hope to go into Grainger Market in Newcastle to get some nice food. There is a lovely bakery in there called French Oven and the bread and macarons are gorgeous. They are doing special flavours for the Jubilee so I have ordered two of each flavour for us of the macarons (16 in total) and two high tea boxes. As I have my new chair I am hoping to go there myself but if not Johan will go for me. I am looking forward to it 🙂

I have been enjoying the nice weather but my body has been responding oddly to it. For a while I needed lots of anti nausea tablets which is not like me and my body couldn’t decide whether it was hot or cold or both, but I have finally adapted. I think it was the change in weather. I have been watching the birds outside my window with it open, and it has been lovely. Luckily my window is shaded by lots of trees so it doesn’t get too hot in my room.

I hope things keep going well. I am liking my new chair giving me more freedom to go out 🙂

Danni

Milkybar and Vimto

Autism, College, Computers, Danni, Gaming, Interface, M.E., Physical Disability, Real Life

I wasn’t feeling well so Johan went to the shop to go get me some Milkybar and a bottle of Vimto squash. I am such a big kid but it did help 🙂

This week has not been brilliant. Seems all the blogging and stuff last week was just a bit too much, so needed to be in a darkened room and couldn’t sit up until today. On Thursday the CFS Clinic peoples came to see me, which we weren’t expecting as we’d forgotten to put the appointment in the calendar. They were nice though- understood that this relapse is one of those things (it’s still the one from the end of April) and just want me to do what I can when I can, and rest lots. They also said I could use heat as much as I like for pain, so long as it’s not so hot it burns me 😛 They’d been contacted by my GP but they don’t deal with medication themselves, so have recommended that he contact the pain clinic. That is all very good. They were not here for very long as talking and processing verbal stuff is the most tiring thing I can do, but they’ll be back in about 6-8 weeks to see how I’m getting on. I likes them 🙂

The big thing for me is that I’ve been invited to the Interface Prom again this year (the old students are normally invited). I really really want to go. It’s in about a month, so it may be possible if I improve enough. The venue is the same as last year which is good, and as the staff and students already know me and my M.E they won’t mind if I need to lie down or stuff (there are some sofas just outside the room the actual prom is in- ideal for lying on :P). I may be being a little optimistic since I’m currently still bedbound, but if I can get back to where I was in April (which is doable) then I’ll be able to go. We’ll have to plan it really well and I might not be able to stay very long, but it would be worth any payback/relapse I’d get as I’d get to see my friends 🙂 We’ll see.

Today I’m doing the best I’ve been for a little bit- I can cope with light normally again, I’m sitting propped up in bed, and I just feel much more with it. I actually feel well enough to go into the living room but I don’t want to push it yet- if I’m still the same tomorrow I’ll go through then. I’m just aware that yesterday I still couldn’t cope with light and couldn’t cope with more than one pillow until the end of the day, so don’t want to overdo it.

Diablo 3 is out and Johan is playing a lot of it. He has a level 55 Monk (level cap is 60) and has completed Normal and Nightmare difficulties. He’s currently on Act 2 (of 4) of Hell difficulty (second highest- the hardest level is Inferno) and is doing pretty well. I want to play it (I got it free with the World of Warcraft Annual Pass) so I’m hoping I’ll be able to go on my computer soon.

I managed to call T-Mobile on Wednesday (I think) to sort out my contact. I was going to move my number to Three (who I got my iPhone with) and they gave me the PAC I needed to transfer it, but immediately after they phoned me back and begged me to stay for £5 a month. I agreed as I was originally going to put it on a £10 a month contract anyway and the 300 anytime minutes inculding 08 numbers is very useful, as they’re currently not covered by my iPhone and I have to pay using the landline for 0845 and similar. I don’t need internet on it as my iPhone contract includes tethering, but having a spare phone is useful and means I have access to all the Android Market (I refuse to call it Google Play- silly name) as well as the App Store. The contract is for 12 months so is only £60 in total, which is less than 2 months worth previously, so I’m happy.

Twitter has been amazing as normal, keeping me sane while I’ve been stuck in the dark mostly by myself. I’m still completely overwhelmed by Facebook, so still only using it very occasionally. Johan’s been coming in and talking to me when I’ve been up to it, and disappearing again when he can see it’s making me (more) tired, as well as looking after me generally.

The carers are starting on Monday. Not spoken to them yet (I’m hoping to do that at some point) but it’s a different agency and they offer a bigger range of help than the last agency, so we’re hoping it’ll go well. If they’re really good we may ask for some extra hours paid privately for some extra help for Johan. First visit is at 10am, then it’ll be late evening (not sure what time- we do have a care plan but I’ve not been able to look at it yet). I’m hoping them washing me, helping me with teeth brushing, hair brushing and when I’m up to it getting dressed will help Johan out a lot. When the shower’s fixed I’ll be able to have one up to three times a week if I’m able to (1 hour calls) which will be awesome.

I think things are looking up 🙂