Category: Autism

Danni

Body Trolling

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

First of all, I’ve recently started reading another ME blog, Documenting M.E. Brooke wrote a blog post about living in bed that I found really helpful, including telling me about an Android AAC app that does pretty much everything I need to do so I don’t need to get an iPad now. The blog post is Tips on truly living from bed (the Android app is Speech Assistant AAC). The blog post is really good so I recommend you go read it 🙂

So, stuff has happened. Things have not exactly gone entirely to plan. Becca got some sort of viral infection and wasn’t able to stay to go to Comic Con. It looked like she’d be well enough to look after me while Johan went to Leeds, but then she tripped over the cat and fell down the stairs. Ouch. She’s doing better now but she had a massive bruise on her hip and it hurt her to move, so looking after me wasn’t going to happen.

Unfortunately I was too ill to go into the care home, so we managed to get some agency carers to stay with me on Thursday so Johan could still go see the ballet with Vicky. It meant he couldn’t see his parents though so we need to sort that out soon. I got lucky with the carers considering how short notice it was – had my normal morning call, a lunch call (that ended up being just after 11am as the carer couldn’t fit me in otherwise, but I went back to sleep so it worked well in the end) then my normal carer as a sit in from 1.30-7pm.

Partway through the afternoon I started having terrible stabbing pains in my right back when urinating. As I was calling out in pain the carer came to check on me, and we decided to phone the doctor. One of the GPs came out within an hour, and with my symptoms and history guessed it was an infection and prescribed the antibiotics that worked last time. The carer went to the pharmacy for me to get them so Johan didn’t have to worry when he got back. Johan’s train was delayed, and the carer insisted she was okay to stay until he got back. He said he enjoyed the ballet, though it moved a bit too fast. Vicky had an exam the next morning so would be arriving the next day.

Friday morning I felt terrible. Hot, sweaty, and generally bleh. That and the pain had spread to most of my urinary system. Definitely felt like an infection. I was glad I’d started the antibiotics the night before so it wouldn’t be too long. Ibuprofen brought my temperature back down and that helped a bit. Vicky arrived that day but I was asleep for most of it so didn’t really see her. Saturday morning I felt better until I took the antibiotics that morning. The fortisip I’d drank had made me a bit nauseous (the antibiotics had to be taken after food) and adding the antibiotic on top made it loads worse. I kept it down as long as I could but it got too much after about half an hour. I hoped it was long enough and took some antiemetics to try and get it under control. As they put me to sleep I didn’t see much of Vicky that evening either, as I woke up just before she had to sleep.

Sunday morning I was awake before Vicky left to go to church and go home. I saw her for a little bit which was good 🙂 I felt a bit guilty that I’d slept through most of her visit but it couldn’t be helped. She’s going off to Palestine and Israel for a year for her PhD so it will be a while until I see her again. I am going to miss her but I hope she gets a lot out of it. Next time, I hope I can go see the ballet with her and Johan 🙂 My antibiotics were only a three day course as we started it so early (a couple of hours after the first symptoms showed) and they seemed to have done the job by the time I’d finished. I’m a little achy when peeing now but that happened after the last infection and disappeared after a few days.

Other things that happened were seeing my normal GP (before the kidney infection) and she tried me on metoclopramide, which made me very agitated and feel wrong. Not being able to stop moving when moving causes my ME to get worse is a definite bad thing. I stopped them and she prescribed me domperidone to take instead. I postponed them initially until after Johan had gone to Leeds in case of side effects, and then because I wanted to get the kidney infection out of the way so I’d know what effect they were having better. I took one dose yesterday and so far today (I’m starting them slowly after what happened with the metoclopramide) and it has made me even more dopey and weird feeling than normal, and a bit hungry, but otherwise it wasn’t too bad. I have to take them 60-90 minutes before food which will be interesting.

CFS team came out today. Went about as well as it could. They’re gonna come back in two months and in the meantime I’m to keep going with what I’m doing (basically a few stretches to prevent my legs from being unable to straighten and trying to sit up as much as I can without payback) and try and get social services to sort out the hoist. Johan also gave me a wash and helped me put my rainbow dress on as I wanted something different to my normal pyjamas today 🙂

I have upgraded my desktop computer Matilda to Windows 8.1 Pro. I have Windows 8 on my laptop, but as I don’t use that at the moment I’ve missed some of the improvements that are in the new version of Windows. I’m not amazingly keen on the Metro interface, but I renewed my subscription to Object Desktop by Stardock so after downloading Start 8, Decor8, ModernMix and a few other little programs it’s now a perfect mix between the advantages of the newer OS (it runs a bit faster, has a much better task manager and some of the Metro apps are good) and having the start menu and running all programs on the desktop from Windows 7. I also have Pikachu as my Start button which made Johan facepalm but I like him 🙂 I still couldn’t find a twitter app that does what I want so I installed BlueStacks so I could run Android with Plume. It runs loads better than it used to and if I could use the mouse scroll wheel with Android it would be perfect (it kinda works, but it scrolls slightly more than one page at a time so it’s not exactly practical). A touchscreen would be nice as well, but using it with a keyboard and mouse works fine with the added programs.

My friends are awesome. Seeing Vicky was another reminder that I have the most awesome friends. When I improve and start getting out again I hope to see some more of my friends in real life, but I’m glad I can see what they’re up to using social media while I’m stuck in bed. I am worried that Johan doesn’t get to see his friends often enough. I’m hoping to persuade him to try the local tabletop gaming club (one exists in Newcastle), maybe on International Tabletop Day (5th April). He’s not sure but I think he’ll enjoy it and if he doesn’t, he can leave. Being able to go and do something not related to looking after me would be good for him, and yet it’s close enough that in an emergency he could get home quickly. Using the care agency for sit ins regularly isn’t really an option (last week’s will be about £70 for a few hours) and most of his friends don’t live locally, so I’m hoping he’ll make some in the area or at least enjoy playing games. I’m also hoping he’ll be a

It makes me sad when my friends aren’t well. As a lot of them have various chronic illnesses, I normally consider it relatively (though obviously I wish they weren’t ill at all). A few of them are struggling (physically, mentally or emotionally) and I wish I could just make them feel better. Sometimes I feel helpless when I’m unable to chat to them or do anything that might make them feel better. My friends have done so much to make me feel like I’m wanted and worth caring for and I want my friends to know they’re awesome and I love them, even if I’m not always able to show it. I love them and I want them to be happy, no matter what happens.

Danni

Stolen Meme Goodness – Old Schooling

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

I’ve got lots of things I want to blog about, so of course I can’t seem to manage any of them. Instead, here’s a meme I stole from Stimey.


What is the last thing you watched on TV?
Part of a My Little Pony episode. I realised I had no idea what was going on halfway through and haven’t finished it yet. I’ve still got stuff to watch from Christmas.

When did you last step outside? What were you doing?
Last time I stepped outside was one step while held up by two ambulance men to get from the front door of my old flat onto a stretcher, in December 2011 (I couldn’t really walk but it counts). I was going to hospital to get some teeth removed. Last time I went outside was in January. I went to the bottom of the ramp in my wheelchair to see outside and it was amazing.

What is on the walls of the room you are in?
A penguin that Sammie painted when she was in nursery. She gave me it a few years ago. I’ve yet to get my other pictures and posters up, but it’ll happen at some point.

If you became a multi-millionaire overnight, what would you buy?
A bungalow with lots of adaptations to make it accessible to Danni’s. A special hospice for those who are severely ill and need extra quiet and care. An awesome computer 😀 I’d also employ some awesome people to help me and Johan out.

Tell me something about you that most people don’t know.
In year 7 I won an award for RE presented by the Archdeacon of Liverpool. In year 9 I failed my RE exam by falling asleep during it.

Who made the last incoming call on your phone?
An unknown number on my mobile. We suspect it was the GP surgery as they phoned our landline a couple of minutes later. I don’t use the phone.

If you could change something about your home, without worry about expense or mess, what would you do?
Get that hoist I need installed. Figure out a way of installing a bath. As it’s a flat we’re limited in what we could do building wise, so moving would probably work better for bigger stuff.

What was the last thing you bought?
A phone charger for a friend. Before that, Windows 8.1 Pro and Object Desktop for my computer (yay discounts!).

Would you go bungee jumping or sky diving?
When I’m a bit better, definitely. Not sure my body could tolerate either right now 😉

If you could eat lunch with one famous person, who would it be?
How do I work out what famous means? There are a lot of people I’d like to have dinner with who are pretty well known, at least in the communities I’m in. I think having dinner with Maureen Johnson would be interesting.

Which store would you choose to max out your credit card?
First I need to get a credit card, then it depends if I have to pay it back again 😉 I love geeky shops, book shops, and small shops with awesome things. If I have to pay it back, I’m most likely going to spend it on something we need.

Is the glass half empty or half full?
I don’t know as I can’t see it. My hydrant is empty as I just finished the juice in it. The glass might just be twice as large as it needs to be. In the metaphorical sense, it’s kinda both. There’s good and bad in the world, and though I try and concentrate on the positives that doesn’t mean the negatives aren’t there.

What’s the farthest-away place you’ve been?
Either Calais, France or Balmedie, Aberdeenshire, Scotland. France is more foreign but at the time Balmedie was further from Liverpool. I need to see which is now I’ve moved north east 🙂

What’s under your bed?
I’m not meant to have anything under my bed as it’s a hospital one. In reality I have a storage bag of clothes, and whatever I’ve knocked off the bed or tables (there’s probably a few penguins, milkshake bottle tops, empty blister packs, small sweets that insist on escaping like smarties).

What is your favourite time of the day?
Probably nighttime. I’m naturally nocturnal and it tends to be quieter. Also, any time of day where my painkillers have kicked in and my symptoms aren’t too bad.

What Inspires you?
People who are able to keep going, especially when life is being crappy. Also those who are strong enough to ask for help when they need it, or know when to stop (it’s often harder than trying to push through). Also penguins.

If you want to do this meme, I’d like to read your responses, whether on your blog or in the comments. Also, Stimey’s responses cheered me up 🙂 Proper blog post coming when able.

Danni

Goodness

Autism, Computers, Danni, Gaming, Important Stuff, M.E., Penguins!, Physical Disability, Real Life, Second Life, World of Warcraft
Penguin and Penelope. Penny's wing is bandaged.
Penguin and Penelope. Penny’s wing is bandaged.

I’ve had a rough day. My prescribed Fortisips arrived and though I was meant to be prescribed only chocolate and vanilla flavours, the first one Johan gave me was Fruits of the Forest. Which my body reacted to as badly as it did the Skittles milkshake and strawberry milkshake I tried, confirming that I can’t have fruit flavoured heavy drinks now (I can manage fruit squash okay, but pure fruit juice, smoothies and fruit milkshakes cause worse nausea; and burn my throat and taste disgusting when they’re brought back up). I also had my body attempting the final part of digestion, which had me shaking, sweating, curled up in a ball and at one point crying from the pain. It lasted several hours, and I’m grateful that I didn’t have to attempt it on a bedpan or toilet as though the clean-up sucks being able to lie on my side did help a bit. I think the worst of it is over this time.

Penelope’s wing got burnt in the microwave 🙁 I performed surgery (cutting away the burnt fur/feathers and removed the burnt stuffing) and have used a part of a dressing to stuff her wing and have bandaged it up. We’re going to look into a skin graft but even if that is possible her heating days are over. I’m giving her loads of cuddles and she’s asked me to find one of her siblings to do her job. Unfortunately the Intelex website is out of stock of Penny’s sisters, but I’ve emailed them asking when they’ll next be available and if that fails, I’ll look elsewhere. She might be a disabled penguin now but I still love her very much.

Despite all that, I’m happy. I believe that every person has at least some goodness in them (even Tories, though it can be hard to see there) and my friends show me their love and goodness all the time. I have Johan, who does everything he can to make me feel as comfortable and well as possible (and didn’t even complain about the messy clean-up earlier). It can be easy to think everyone and everything is bad when that’s what must of the news concentrates on, and there are a lot of bad things that happen, but there are people trying to make the bad things less bad and do more good things. One of Nerdfighteria’s aims is to reduce world suck (the other main one is DFTBA – don’t forget to be awesome).

I might blog about the downsides of having severe ME (and like a lot of disabling chronic illnesses it sucks a lot) but part of me learning to adapt to it was to try not to dwell too much on it. Blogging and tweeting helps me with this- once I’ve written about it it frees my brain to think about other things, and knowing that there are people who care really helps. Having ME has opened me up to a whole community of good people I proudly wouldn’t have met before, some of whom I now class as friends. I still want a cure and wish my friends weren’t suffering, but I’m grateful for what it has brought me. (I try and keep out of the politics side of ME for the same reason I limit my intake of bad news- there’s nothing I can safely do to help and there’s a lot of (mostly justified) negativity that makes me more ill.)

I’m also grateful to be Autistic. Unlike the ME I don’t want to be cured, despite the difficulties it can cause. I like who I am and I wouldn’t be the same person without it. I discovered Second Life through the autistic community, and without that I would never have met Johan. Autism doesn’t make me ill- it means I think and process stuff differently, but it’s not broken. I have super senses- it may mean I can’t tolerate loud noises or certain smells but it also allows me to enjoy lights and sparklies in a way I can’t explain. And every time I see a penguin it makes me very happy. The autistic community has also introduced me to some awesome people I otherwise wouldn’t have met, and learning there were people like me has been very positive.

Lent begins tomorrow. I’m not giving anything up for it this year- if I were to give up something food related I think my dietician would kill me, and I’m not sure what else I could give up. Instead, I’m going to try and do nice things for people. After I wake up I’m going to make a list of the specifics of this, but some ideas I’ve had are writing a note to someone on Post Pals, sending someone who needs cheering up a small gift, and seeing if I can help someone with one of my skills (I might not have many I can currently use, but there are still some).

Good things that have happened today include playing some World of Warcraft, Johan and the other raiders in my guild managing to kill Heroic Paragons, managing to install a new beta version of Paranoid Android on my tablet (accidentally wiping it in the process, but it needed it and I’d backed it up yesterday), cuddling my Penguins, making Penelope feel better, getting clean, dry pyjamas on, joking with Johan, talking about interesting things with my guild in Mumble, playing with the Google Now speech recognition stuff, and writing this blog post. That’s quite a lot considering I’ve been awake less than twelve hours and haven’t got out of bed 😛 Time to sleep now, and that’s good too.

Danni

Busy March

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

Although the beginning of the month took me by surprise (yesterday I woke up late after a 16 hour sleep and was convinced it was still February until I got my Brew of the Month club mail in World of Warcraft) it’s shaping up to be quite a busy one for us.

Becca is staying with us next weekend as she’s going to Newcastle Film and Comic Con and we live much closer than she does (she lives in the middle of nowhere with a rubbish bus service and worse internet connection, we’re quite central with decent buses, walking distance from Newcastle if necessary, and awesome internet). I wish I could go with her as it looks to be amazing but will have to experience it second hand. Her staying here should make that easier though 🙂

Vicky has invited Johan to go see the ballet in Leeds the week after, and he’s going to go down a couple of days early to see his parents and friends and so on. Becca has kindly offered to look after me so I don’t have to go into a care home 🙂 After the ballet Vicky is going to come back with Johan so I can see her before she goes gallivanting across the world. It’s been a while since I last saw Vicky in person so it will be awesome. She’s a low energy person so I’m hoping to be able to chat while she’s here 🙂 (Different people require different levels of energy for me to be able to be around them- it’s not a bad thing, or related to how much I like the person, just something I have to take into account when it comes to visits and things.)

The week after that I have the CFS team coming out to see me. It was meant to be to discuss my visit to see my consultant but since that hasn’t happened I’m not sure what we’ll be discussing. They are helpful but exhausting so that is also a big event in my calendar.

I am not doing amazing at the moment. The curtain has been up for a while and today I’m non-verbal again. Moving causes my back to go into spasm so I’m trying to remain very still. Johan has dosed me up on painkillers and an antiemetic to help with the nausea and heated penguins so I’m as comfortable as I can be, which is good.

Yesterday my carer went to Primark for me to get me a penguin onesie. Although I have one, it’s huge (XL men’s) and I wanted one that would fit a bit better. They were reduced and since she was going to be in there anyway she offered to get one for me. I love it and can’t wait to be well enough to try it on 😀

My World of Warcraft playing is good at the moment. Not well enough to do any raids (not even LFR) so I’ve been concentrating on levelling. My blood elf paladin Catalia is now level 73, and my recruit a friend character that I’m levelling with Becca, Caitlyna, has reached level 60. We’ll be going to Outland when we next play together 🙂 It’s interesting trying to teach her- she wasn’t doing well on DPS in dungeons (she was asked about it during one of the runs- once I explained she was new they were fine though) and I discovered it was mostly because she wasn’t using charge (her character is a fury warrior). I’m also trying to teach her not to click the abilities and to use the keyboard instead, but she’s finding it difficult. Unfortunately unlike me she’s unable to touch type which helps a lot for being able to use key bindings without looking, but I’m hoping with practice she’ll be able to manage it at least some of the time. I showed her where the training dummies were in Stormwind and asked her to install a damage meter so she’ll be able to practice 🙂

I’ve been watching a lot of Foster Kitten Cam recently. The Ghostbuster kittens are so cute! It was sad last night though as Peter, one of the kittens, died in Foster Dad John’s hands. It upset me quite a bit even though it’s not uncommon for kittens to not survive. He was so active, constantly trying to escape, and I know he will be missed by a lot of people. His litter mates, Egon and Ray, are also really active and keeping their mamma Janine busy. Earlier today one of them escaped the box and mamma had to carry him back in 😛

I tried to watch some Hearthstone earlier but not quite got the concentration for it. I think I’ll go do some easy levelling or something in World of Warcraft. I’m hoping my body starts behaving better soon but until then I’ll just do what I can to not get worse and distract myself from the worst of the blehness.

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.