Category: Computers

Danni

How To Order a Prescription The Easy Way

Autism, Computers, Danni, M.E., Physical Disability, Real Life
  1. See dietician on 22nd January. Due to current inadequate food intake, she prescribes Fortisip food supplements.
  2. Letter arrives at both GP and home a few days later, including details of the prescription. Have no idea how to actually get said prescription, as how to get prescriptions after they’ve been sent to your GP was not part of either Danni’s or Johan’s education.
  3. See the social worker for a care review the next week. Tell her about the not having any idea how to get the prescription issue. Social worker says she’ll contact the GP to sort it.
  4. Get distracted by other issues. Order repeat prescription of painkillers a couple of weeks later. Due to anxiety issues, have to wait a few days for Johan to pick it up from the doctor to take to the chemist. Johan collects painkillers on 18th February. Johan notices that the Fortisips are now on the repeat prescription.
  5. Johan tells Danni that Fortisips are on the repeat prescription the next day. Danni asks Johan to order them. Johan attempts to do so that week but the GP’s opening times have changed and they’re closed when he gets there. Johan panics.
  6. At the weekend Danni tells Johan he can either put the Fortisips prescription in himself or she can ask carer to do it, but it does need doing. Johan states he doesn’t want the carer to do it.
  7. On Monday 24th February Johan calls the GP surgery via Skype to put the prescription in. It would be ready by Wednesday.
  8. Wednesday Johan is busy doing stuff in the flat and is unable to get to the GP surgery before closing time. Decides to pick it up Thursday instead, when less busy.
  9. Wednesday night upstairs neighbour turns electricity off for both ours and ground floor neighbour’s flat, and turns our back on. Johan sees upstairs neighbour running up the stairs straight afterwards. Ground floor neighbour accidentally turns our electricity back off when trying to turn his back on, and Johan speaks to him outside flat. Upstairs neighbour hears conversation, comes down, denies being responsible for the electricity being turned off, and when Johan informs him he saw him threatens to make Johan’s life hell.
  10. Thursday Johan is scared to leave flat due to neighbour’s threats. Johan emails the housing officer about this, and Danni and Johan discuss things that need to be done to ensure safety. Johan not wanting to leave the flat and Danni alone means he cannot go pick up prescription. When carer arrives for evening visit explain everything to her. Carer offers to pick up prescription and put it into the chemist before morning call the next day, as it’s close to where she lives.
  11. On Friday (today), carer collects prescription and puts into chemist. Arranges for Fortisips to be delivered on Monday morning. During morning call tells Danni that she managed to sort prescription and when they’re being delivered. Danni is relieved. When Danni manages to wake Johan up she informs Johan of carer’s success and delivery on Monday.

Getting these Fortisips has been a lot more complicated than we expected. At first we didn’t know how to order them (and we’re still not sure if we get a similar situation, though I’m going to ask the GP next time I see her). We were lucky that the social worker came out not long after receiving the letter from the dietician and that she offered to sort it for us, and that the carer was able to pick up the prescription this morning (though she can make phone calls for me as Johan normally picks my medication up with no/only minor issues picking up prescriptions isn’t on my care plan). Hopefully they’ll arrive on Monday and from then on they’ll just be ordered as I need them along with my painkillers. (I know about online ordering of prescriptions but to complete the online registration you have to go to the surgery to prove who you are- which I can’t do. I’m going to ask my GP about it when I next see her.)

We’ve had ongoing issues with our neighbour but this is the first time he’s directly threatened us, so as I’m very vulnerable (being unable to move or easily contact people) Johan doesn’t want to leave me until things calm down. Things we need to do before we’ll feel safer are find out if the care call system still works if the electricity is switched off (as if Johan isn’t in I can’t switch it back on myself) and also get the care call pendant swapped to one I can actually use (as the current one requires too much pressure to push and for that reason I was unable to use it the last time I needed it).

During the last emergency (when Johan had to go into hospital) I ended up communicating via the internet, and if the power goes there’s a good chance I won’t be able to use it as the router goes off. I do have my iPhone with tethering as a backup, but I’m not always able to use my iPhone (hand spasms and shakes make using such a small touchscreen difficult, and impossible when they’re bad) to switch it on. Thanks to Tablet Talk I can send text messages from my tablet via my Android phone which I can use despite spasms, but as far as I’m aware care call don’t have a text number and when I tried contacting the duty social worker via text when Johan was in hospital I got no response at all. In an absolute emergency I can text 999. Most services expect you to phone them and when you can’t you’re stuck.

In the longer term we are going to look into getting our electricity meter moved into our flat, or if that’s not possible asking the council to put a decent lock on the cupboard door so that the upstairs neighbours can’t touch it. I’m also going to look at battery backup for our router as internet is so important to both of us. I’m trying to find a text phone service via broadband but although there used to be one that I used years ago I can’t find it now- the closest thing I’ve found is TexBox, but their app only works with certain companies (none of which are relevant to me) and I couldn’t find an email address to contact them (only a telephone number and a text phone number- which I can’t use). Text phones themselves are expensive and none I’ve seen are good for using in bed so aren’t the ideal solution. If anyone knows of a way of using text relay via internet (either Android app or via computer) then please let me know. Johan finds Skype easier to use but as I have auditory processing issues and speech issues that’s not a good solution for me unless I’m Skyping someone who can also receive the messages in text.

Danni

Bedrooms and WoW and Stuff

Computers, Danni, Gaming, M.E., My Little Pony: Friendship is Magic, Physical Disability, Real Life, World of Warcraft
A small bedroom with a single bed in the corner with purple bedding, a clothes rail with hanging shelves, and boxes with items in. There is clear floor space in the middle.
A small bedroom with a single bed in the corner with purple bedding, a clothes rail with hanging shelves, and boxes with items in. There is clear floor space in the middle.

I’m now nocturnal, thanks to sleeping most of the day on Thursday when I was meant to be going to the hospital. I’m not concerned about this, as otherwise I’m not doing too bad for me (so long as I don’t move, I’m not touched, and I don’t eat) and I figure it’ll sort itself out in its own time.

For Valentine’s Day I kicked Johan out so that Becca and I could sort out his bedroom. He went to see The Lego Movie (he really enjoyed it and said it was very good). Becca brought all the boxes in Johan’s room into mine so I could work out where things go, and after a lot of work (mostly by Becca) we got it sorted. When she’d finished, she made the bed, put Patricia (the penguin) and Charlie (the Jedi monkey) on top and took a photo so I could see.

Johan was very happy with this, and we decided that on Saturday he’d replace the single bed with the double bed I used to use, as there was now room to do that. He also moved the remaining boxes into the cupboard, dismantled the clothes rail, moved in the spare computer desk, and a spare kitchen cupboard we happened to have for his clothes (until we get him a chest of drawers). He’s now wanting to put his posters up (we can’t paint until I’m less sensitive to smells or able to disappear for a few days) so it feels more like his space. Since he’d been sleeping in what was effectively a storage room for two years, I’m hoping he enjoys having a proper room (and having the double bed- he’s yet to tell me which is more comfortable though).

The same small bedroom, mostly filled with a double bed with purple bedding. There is a computer desk in the corner, with a computer chair in front of it. There is very little space between the two.
The same small bedroom, mostly filled with a double bed with purple bedding. There is a computer desk in the corner, with a computer chair in front of it. There is very little space between the two.

This means our flat is getting closer to being sorted. Now the living room is the main room that needs working on, but that shouldn’t be as difficult as Johan’s was. We have a lot of boxes to sort through and I need to get some bookcases for all my books. The plan is to get a daybed frame and use that with the (now spare) single mattress to replace the sofa, so that if we do have someone staying over they’ve got somewhere to sleep, and maybe I’ll be able to lie down in the living room when I’m doing better. This is mostly because we don’t otherwise have room for all three beds (my hospital bed, the double bed in Johan’s room and the single bed) and that mattress is really comfortable so I don’t want to get rid of it 😛 Our sofa is rarely used as such anyway (Johan spends all his time in his computer chair, and I’ll be in my wheelchair if I go through there) so having a daybed is a better idea. We’ll also be able to use bedding and cushions to make it purple 🙂

Becca went home yesterday (Sunday). I think she enjoyed her stay here, even though it included a lot of hard work. It was nice for us as well- having someone else to talk to and just be with for a few days was good, and she has a pretty good understanding of my needs so I didn’t have to worry about offending her or upsetting her if I needed some time alone. We have determined that she doesn’t want to do personal care as a job, but she’s able to provide mine okay so it meant Johan got a bit of a break, even while he was here.

Since I’m not doing too bad, I’ve been playing probably too much World of Warcraft. In the last day I’ve got my Pandaren Monk Dannila to level 90, and my first Battle Pet to level 25. After I wake up I’m going to be doing some recruit a friend levelling with Becca, which will be fun. We’re currently level 56 and I’m hoping we’ll reach level 60 so we can get flying (I’m supplying the gold, as my gold making is ticking over even though I’ve barely worked on it recently). Now I’ve got my first max level battle pet I’m finding it much easier overall, so it shouldn’t be too long before I have several of them. I’ve got a list of goals for World of Warcraft so I have some idea what to work on, especially as different things require different amounts of brain power/concentration (I’m not well enough to raid at the moment but pet battles and levelling are fine).

I still can’t watch My Little Pony, which is frustrating. Not sure why exactly but I just can’t seem to understand what’s going on. This is especially confuzzling as I’m able to play World of Warcraft okay. The same thing applied to trying to watch the Winter Olympics- I had no idea what was happening, though the figure skating I saw was pretty. I’m managing to read okay (even if I can’t remember it afterwards) so I’m going to guess it’s a problem with auditory processing being particularly bad at the moment. That’ll also fit with me struggling to understand Johan when he’s talking to me. I need to get the subtitles on for Ponies but that requires brain power and mine is limited 😛

I’m happy. Johan has been cheerful recently as well. I’ve done some productive things (cancelled Netflix and Unblock US as we’re not using them right now- we’ll resubscribe when we want them) and I’ve got a plan for other things that need doing so I can sort them when I’m next able to. Even though I might need to wait until June to see my consultant (that’s when my next appointment is- I’m hoping for a cancellation) I feel like I can get things sorted and moving forward now. I still have some problems (my body does not like me eating- doing so causes bloating, nausea and pain no matter what I’m having) and I can’t get out of bed yet, but they will get better.

Danni

Preparing For An Outing

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

Tomorrow morning I’m going out properly for the first time in quite a while. I have a hospital appointment to see my consultant at my GP’s request. It’s not at my local hospital, so it’ll be the furthest I’ve been in well over a year (it’s in Newcastle so not excessively far, luckily). As I’m not currently well enough to sit in my wheelchair at all (unfortunately I’m yet to have a repeat of the good days last month) I’m going by stretcher.

This is a big event, and requires a lot of preparation. I’ve selected a pair of pyjamas that are fancy enough to be worn as day clothes, yet are still comfortable. With them I’ll be wearing my arm warmers, as they’re short sleeved and my arms get cold (and in the event I need a blood test, they’re easy to take off). I’ll also be wearing some warm bed socks in an attempt to stop my feet freezing. I’ll need my tablet in case I lose speech and to communicate with the outside world if I’m up to it, and my phone for internet.

To accommodate my sensitivities, I’ll be taking my sunglasses, eye mask, ear plugs and ear defenders. Since too much light and noise make me much more ill I can’t be too careful there (hospitals are not known for being restful places so I try and avoid going there when possible). I’ve not found a decent way to deal with my sensitivity to smell so I’ll be taking an antiemetic and mints and hoping it isn’t too bad. Spare pads and wipes will come along just in case, and I’ll need my Hydrant to prevent dehydration. I’ve got a couple of blankets to try and deal with my temperature fluctuations, and will have a cushion or two to try and make it as comfortable as possible. I’ll also have my appointment letter, a short explanation of my communication needs/what to do in an emergency, and a list of important things to talk to the doctor about.

In a strange way, I’m looking forward to it. Getting out of bed is so rare for me that even going to the hospital is exciting. There’s a pretty good chance it’s going to make me crash afterwards (I’m currently so touch sensitive that even hugs make me more ill, and movement makes me feel horrendous) but we’re planning for that. I have lots of milkshakes and stuff in as my chewing is dodgy already and the easier ways to consume calories I have, the better. Seeing outside my bedroom will be fun (assuming I’m well enough to wear my sunglasses rather than needing my eyemask- otherwise I’ll just have to listen :P).

Since I last blogged I’ve seen the district nurse, who was the one to recommend getting stretcher transport when we explained my problems with trying to go by wheelchair, the CFS team who have shown Johan how to prevent my legs from unstraightening when I’m not well enough to straighten them myself and were reassuring me about stuff, the dietician who has prescribed some milk based supplements because of my new intolerance to heavy juice drinks (can have squash but not smoothies, proper fruit juice, fruit flavoured milkshakes or fortijuice) and my eating being really poor again, and the social worker who was doing a care review and she’s going to pass on our concerns for us (I’ve not been well enough to email the agency) and contact the doctor about getting the supplements. All those visits have meant I’m not doing as well as I was before them, but I’m not that bad for me.

Johan went to Manchester to see a ballet with Vicky, and my sister Becca came over to look after me, which was good. She’s also here now, originally to go see someone from the get back to work people (she’s in the work related activity group for ESA- they are doing the work related activity) and also just generally helping us out a bit. The break helped Johan a lot and he’s overall been more positive and able to cope. His trial for the raid team in World of Warcraft went well, so he’s now a permanent member and they’ve since got Siegecrafter Blackfuse Heroic down in 25 man, so there’s only two bosses left for them to kill. He’s really enjoying it and it’s good for him to have something to focus on There’s another discipline priest on the raid team that is his main competition, and he’s occasionally been beating him while less geared so that has made him very happy 🙂

I’ve been playing quite a bit of WoW, mostly doing my daily cooldowns, Timeless Isle dailies on Danni and levelling my lowbies. I invited Becca via Recruit a Friend and we’re levelling some characters together- she’s a warrior and I’m a hunter. I don’t know either class so that’s been interesting 🙂 For some reason I’ve not been able to watch television, even easy things like My Little Pony- my brain just can’t process it right now. I watched a little of the figure skating in the Olympics but I was absolutely exhausted afterwards, in a way I don’t get when I’m playing WoW. Danni is weird 😛 I’m so glad I’m still able to get on my computer and play WoW though, as it’s helping me cope with everything, especially since my digestive system really hates me now (recently it’s been taking between 12-36 hours for food to leave my stomach, which I know because I keep bringing it back up and it’s identifiable).

If I don’t blog for a bit then it’ll be because I’m recovering from the hospital appointment. I’m hoping it won’t take too long though as I have so many things I want to blog about as soon as I can 😀

Danni

An Idea

Autism, Computers, Danni, Gaming, M.E., Physical Disability, Real Life, World of Warcraft

So I had those really good days, and got to go outside. Then I had not so good days. At one point I thought I might be relapsing again but luckily it didn’t get that far. Still, I had some good days and I’m happy about them. Since then I’ve watched the Doctor Who Christmas episode (it was weird, but I think I liked it), watched several episodes of My Little Pony, watched some of the films I recorded over Christmas, and have read a couple of ebooks. Most of them with very little concentration but yay!

I’ve also been playing World of Warcraft a bit, doing dailies on my level 90s and levelling my Shaman and Monk. My WoW guild has swapped to 25 man raiding after absorbing some of the members of the previous best guild on the server that died not long ago, and is now 11/14 heroic 10 and 25 man. I’m not raiding (not well enough for the flex raids at the moment- I wouldn’t attempt heroic with how bad my brain is even at my current best) but Johan is currently on trial for a spot as a disc priest. He’s been raiding since the swap to 25 man and he’s really enjoying being at the more top end of play. There’s another disc priest in the guild (who is really good) and Johan isn’t doing too bad in comparison, especially considering he’s less well geared. He says he’s improved a lot this week over last, and I’m really hoping he gets a permanent spot. It took a lot of persuading from several raid members to convince him to apply, something I’ve been nagging him to do for months. Overall I’m really proud of how well the raid team is doing, as they’ve caught up to their 10 man progress in 2 weeks, and there hasn’t been much time to get to know each other and work together. I was seriously impressed with their Spoils heroic kill, as they were only giving it one attempt that night and they got it down in one 🙂

Anyway, my idea. For quite a while now I have wanted to set up a local tabletop gaming club (board/card games). It’ll be mostly for autistics, but other people would be welcome as well on the understanding that it’s an autistic safe space (I know it can’t be universally accessible to everyone but I’d want to make sure people were comfortable being autistic there, and make sure there’s somewhere quiet for those who find noise a problem). Currently Autistic North East does social meetups, but they are nearly always held in a pub and I know that’s a problem for some people (including me at times, even before I got ME). Both Johan and I like games, and want to try more, but I’m often not well enough and quite a lot of them require more than two players. My idea was to have a selection of games available, from snakes and ladders to Monopoly to Settlers of Catan and Munchkin, and people could play the games they wanted. I know I find it easier to socialise if there’s a distraction available, and if nothing else it would be fun to play games.

The main problem with my idea at the moment is I’m too ill to do anything about it. Being stuck in bed means it’s on hold. When I am well enough to do it (in the future) I’ve got quite a bit to work out and plan. I’d need to find a space to hold it (preferably central Newcastle as it’s easy to get to from most of the North East), somewhere we could meet on a regular basis without too many changes (as change is bad). It would preferably be not too public and have somewhere quiet nearby that people could go to if things are getting overwhelming. Ideally there would be some facilities for basic snacks and drinks, either to purchase or to consume if brought in. We’d need tables and chairs (how many would depend on how many people would be interested, something I’d need to find out closer to the time) and figure out the best way to provide games (either bringing in favourites from home, purchasing some especially for the group, or both). It might need some form of funding (especially for purchasing of games, and maybe for the venue space if I couldn’t find somewhere for free), and there might be some other legal stuff to consider that I’ve not discovered yet. Then it could only go ahead if people were interested, and I’d need to advertise the group to make sure local autistics know it exists. And it’s quite possible I’ll need some help with organising it.

I’ve thought quite a lot about it. I can’t plan it more than just the basic idea though. I was originally going to propose it to Autistics North East (and might still do so) but am wondering if it might work better being separate. I first thought about it after hearing of a similar group in Aberystwyth that a friend goes to and enjoys and thought it would be great for this area. That was years ago now though (I was still able to get out and about) and I’ve been sitting on it since. I’ve also been looking generally for tabletop gaming groups/events in the North East as I’d want to go when well enough and I think Johan would enjoy it, but not found anything yet. Even if they existed I’d still want to arrange an autistic friendly one if there was enough interest, but as that’s probably years away it would be good to know of an alternative until then.

So that’s my big idea- making the world a bit less sucky by playing tabletop games with other autistics. Don’t forget to be awesome 🙂

Danni

Improvement!

Computers, Danni, Gaming, M.E., Physical Disability, Real Life, World of Warcraft

For some unknown reason, I’ve started improving. Not just the small improvements I normally get when coming out of a relapse though- I feel much stronger, and have so far sat on the edge of the bed unsupported for 30 seconds (Johan stayed there to be sure I didn’t fall) and sat on my bed for much longer. Then I cuddled Johan for half an hour because I’d not been well enough for hugs for weeks and I really wanted them.

Last night (unfortunately I’m nocturnal at the moment but my sleeping pattern will fix itself when it wants to) I found that after the normal blehness that comes from waking up had worn off, I was feeling just as strong as I did the day before. I was playing some World of Warcraft and planned to try getting into my wheelchair, when the power went off. Unfortunately there was a fault with an underground power line and it took over 4 hours, cutting the cable and adding fuses (according to Terry at Northern Powergrid, who was keeping me informed via Twitter) to get it back up. When the estimate changed from 1am to 4am (at 1.30am) Johan went under my bed and lowered the head of it manually, as although I was doing okay with having the head of the bed up we didn’t want to risk me becoming more ill. Without the bed working or lights (we had a couple of torches though Johan had misplaced some of them) getting into the wheelchair wasn’t feasible so has been postponed until I next feel well enough. If I’m lucky that’ll be after I’ve woken up again 😀

I honestly cannot explain why I’m doing the best I have in about 2 years. Going from incredibly weak (unable to even roll over or raise my head off the pillow weak) to being able to support myself for a bit in less than 2 weeks is amazing. I’m incredibly grateful for it, and I’m hopeful it’ll continue and I might even get better completely. If not though, I’ll remember these days as good days anyway. I think resting plenty might have had something to do with it, and there’s prayer as well which I know can work sometimes, though not always as expected.

I’m not completely better. My digestive system still hates me, I’m still getting a lot of nausea, pain is still a big problem. I still have a some muscle spasms, though they’re mild at the moment. But I’m doing so much better than I was even at Christmas that it feels amazing, and I really want this to be a long term thing. I’m praying 🙂