Category: Gaming

Danni

Want To Blog

Autism, Danni, Gaming, M.E., Physical Disability, Real Life

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.

Danni

Discord

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

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 🙂

Fluttershy vs Penguins

Fluttershy vs Penguins by Kasatania.

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

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 🙂