Physical Disability – Page 13

Thursday 14th June, 2018Thursday 14th June, 2018 Danni

Week 23 Review

Computers, Danni, Gaming, M.E., Penguins!, Physical Disability, Real Life, Week in Review

I am so happy I had a shower! Johan took the photo after I’d been sorted out in bed afterwards.
Mostly had a chilled out week, saving energy for the Sunday as Johan promised he’d shower me if I was well enough, no matter how he felt (after I’d asked him a few times and he didn’t feel up to it). I ate a lot of ham and pease pudding sammiches, because they’re nice and I remembered to buy the ingredients when I did the food shop.

I did quite a bit of sleeping, and reading Reddit/watching YouTube/playing mobile games when not resting. Sammie confirmed that her internet was more stable which I’m happy about.

I had to call Johan home early due to digestive problems, and had issues with my legs and hips due to how long I was lying on them (I have to sleep on my side as otherwise I can’t breathe properly, and though the alternating air mattress helps a bit it doesn’t fix all the pain).

Johan ran the Blaydon Races on the 9th of June, and I was able to follow his progress via his Garmin GPS watch, which I then live tweeted because I could. He told me afterwards that I knew before he did what his time was. Garmin said he took 38 minutes 9 seconds to run 5.6 miles, but his official result was 38:04. As he was wanting to get under 40 minutes he was very happy with this. Afterwards he went out with friends and came back less sober than he left 😛

Sunday was shower day and it took until the evening for me to be well enough, but it was awesome. Found another couple of things I need to improve on the shower chair to reduce pain such as lumbar support and some sort of cushioning on the foot rests, but that shouldn’t be hard.

I do want to find out why I can’t breathe properly when the shower is on my head and neck (and face, but that seems more obvious). We’ve got it on the lowest setting and the temperature is fine, but something about it makes me really breathless. It could just be pain as even on the lowest setting each water drop hurts, but it’s less of a problem below my shoulders. Makes washing my hair interesting but at least with it being so short right now it doesn’t take long.

Overall mood – Good, with a normal level of symptoms most of the week, high level Wednesday and Thursday.
Average daily sleep – 9 hours 19 minutes
Longest sleep – in 19 hours 1 minute from Thursday morning to Friday evening (deep sleep 59%)
Clothes changed – 2 (Gender is a Universe top, Orange Boy Fan Club top)
Wipe wash – 0
Water wash – 1 (I had a shower!)
Hair wash – 1 (Shower! Yay!)
Books read – 0
TV watched – 0
YouTube videos watched – Vlogbrothers, Tom Scott, Jessica Out of the Closet
Streams watched – Rockhopper penguin cam
Music listened to – 0
Podcasts listened to – Welcome to Night Vale (Episodes 33-37), Uncommon Sense (Episodes 0-2)
Blog posts written – 1
Penguins cuddled – Poseidon demanded the most 🐧🐧🐧
Johan hand holds – Yup
Johan hugs – 0
Time on Twitter – 3 hours 59 minutes (average 34 minutes a day)
Time on Reddit – 18 hours 17 minutes (average 2 hours 36 minute a day)
Time on Facebook – 21 minutes (average 3 minutes a day)
Other –
- I had a shower! It had been nearly a year since the last one so I’m still excited.
- Have discovered most of my penguin bedding has disappeared. I hope it turns up soon.
- TV Tropes is good to read when not feeling great.
- Rockhopper penguin chick is called Floof because I say so (and is a big ball of floof). Floof escooped their nest this week, but ran back and hid behind parent when hoomin came.
- This blog post is late due to payback from shower. It also was posted prematurely as I pressed the wrong button. Twice.

Game stuff

Games played – 4
- Animal Crossing: Pocket Camp
- Cross Stitch
- Neko Atsume
- Godville
AC: Pocket Camp Level – 105
Godville Heroine Level – 54 (80% done)
Godville wood for ark – 25.8%
Godville savings – 1 million, 63 thousand
Cross stitch completed – 5
Most played game – Animal Crossing Pocket Camp (12 hours 11 minutes, average 1 hour 44 minutes a day)
Other –
- Completed Bumblecubes event with a day spare. Having lots of generous friends in game helps a lot.
- I miss World of Warcraft and other PC games. I hope to be well enough to play them again soon.

Monday 4th June, 2018 Danni

Week 22 Review

Danni, Gaming, M.E., Penguins!, Physical Disability, Prisoner, Project 365, Real Life, Week in Review

Johan is much better at taking photos than I am. Purple light isn’t really that great for selfies. I have stolen his t-shirt though, which makes a change from him stealing mine (the hamster and penguin do a fusion dance and turn into a porg lower down the t-shirt image).

Mostly been a sleepy week. It took a couple of days for the side effects from the extra medication to ease off, but it wasn’t too bad. I was up all through Monday night/Tuesday morning but was pretty productive during that time, updating my care instruction book and started work on a series of blog posts I’m hoping to get done soonish.

Tuesday Johan went to Sammie’s to see if we could stabilise her internet connection. Living in the middle of nowhere there isn’t much we could do about the slow speed but swapping from wifi to powerline adapters seems to have help stop it constantly disconnecting. I helped by buying them 😛 Once I did get to sleep I slept through until Wednesday evening, with small enough antinaps they’re not showing on my tracker.

Not listened to much Welcome to Night Vale as Johan wanted to catch up. He’s now ahead of me but only by a couple so hopefully I’ll catch up to him soon. I did listen to part of a Hello Internet episode but they’re too long for me at the moment (and I didn’t find a transcript so other than there being a zoo, penguins and Star Wars involved I don’t really know what was going on).

Other than sleeping, being very sleepy and working on future blog posts and some spreadsheets, it’s been a pretty quiet week. Was a little bit grumpy on Saturday as I felt well enough for a shower for the first time all year, but Johan wasn’t up to giving me one. I had a wipe wash in bed but it’s not the same (and due to various reasons mostly around not coping with care workers, more painful than the shower would have been). I cheered up by the time I filled my diary in though.

Still waiting on my wheelchair being fixed. Johan says the replacement parts have been ordered, but not heard from them yet so will be prodding him to chase them up soon. I’m wanting to have it back for my birthday – though as the last time I was out of bed on my actual birthday was 2011, I’m not sure how realistic using it is then is. I’m hopeful though and don’t have any big events I need to rest for like some other years.

I’ve decided to start tracking my symptom levels along with my mood, as otherwise it’s just a lot of goods which isn’t very informative (other than now knowing I mostly have good days moodwise). Only figured out I could do that this morning though so it won’t be recorded below until next week’s blog post. I’m glad to get it done on time this week.

Overall mood – Good
Average daily sleep – 10 hours 51 minutes
Longest sleep – 24 hours 13 minutes from Tuesday evening to Wednesday evening (deep sleep not recorded due to user error)
Clothes changed – 1 (Johan’s penguin + hamster = porg t-shirt, and cat fleece top)
Wipe wash – 1
Water wash – 0
Hair wash – 0, but did get head wiped during the wipe wash
Books read – 0 (I need to remind myself I want to finish this book)
TV watched – 0
YouTube videos watched – 0
Streams watched – 0
Music listened to – 0
Podcasts listened to – Welcome to Night Vale (Episodes 31-32), Hello Internet (part of episode 37)
Blog posts written – 1 (though worked on another)
Penguins cuddled – Lots of cuddles 🐧🐧🐧
Johan hand holds – Plenty
Johan hugs – 0
Time on Twitter – 3 hours 33 minutes (average 30 minutes a day)
Time on Reddit – 21 hours 13 minutes (average 3 hours 1 minute a day)
Time on Facebook – 19 minutes (average 2 minutes a day)
Other –
- Sleeping a lot makes it harder to do stuff. As does being too tired to do much.
- Definitely think the weather has a big impact on how I feel. When it’s warmer outside I’m in less pain and often feel better overall. If I’m not asleep.
- My hips are complaining a lot about how much sleep I’m getting. Although the alternating air mattress helps a bit, they still don’t like the pressure after a few hours, and the 90 minutes or so of lying on the other one isn’t a long enough break.

Game stuff

Games played – 6
- Animal Crossing: Pocket Camp
- Cross Stitch
- DragonVale
- Neko Atsume
- Godville
- Color Puzzle
AC: Pocket Camp Level – 103
Godville Heroine Level – 54 (38% done)
Godville wood for ark – 24.4%
Godville savings – 1 million, 9 thousand (yay!)
Cross stitch completed – 1
Most played game – Animal Crossing Pocket Camp (12 hours 27 minutes, average 1 hour 46 minutes a day)
Other –
- New Animal Crossing flower event – collecting Bumblecubes (cubed bees)
- Seems a bit harder to get the rarer bees this time for the first half
- My to visit list in Animal Crossing has reached 25 people. I know one of them outside the game.
- Happy to get my first million savings in Godville. Only 29 million left to go 🙂

Thursday 31st May, 2018Friday 1st June, 2018 Danni

Week 21 Review

Danni, Gaming, M.E., Mental Health, Physical Disability, Real Life, Week in Review

I took this photo while chatting to Sammie (and Johan). I forgot to take a different one for the blog so it’ll do.

A mixed week overall. Some good bits, some bad bits. Had some long sleeps, watched some YouTube, and broke then fixed my tablet. On Friday I started crying before Johan left, rather than after (I don’t like being left alone so I cry for a bit after Johan leaves then try and distract myself) and it made me feel really guilty. I don’t want to stop Johan doing stuff, but I feel really vulnerable and lonely. and if anything the care calls make it worse as I hate being touched and don’t cope with lots of different people. Not sure there is much that can be done about it, and some of the problem is me sleeping through the times Johan is here and awake, but if I try and force a sleeping pattern I get worse really quickly.

On the good side, I found a light up balloon, so blew that up (my lungs being the only part of my body that work properly) and then played with it and annoyed Johan with it (initially I kept knocking it out of my reach so he had to fetch it, then I tied a string to it and it kept getting in the way when he was trying to help me). I also bought a fidget spinner, which I managed to play with once before Johan stole it 😛 I’ve only just got it back while writing this.

I’d been having an issue with my tablet not displaying the notification bar/navigation bar when swiping from the top or bottom in a full screen app. As my tablet doesn’t have hardware navigation buttons, it made it quite difficult to use, though my rom has a gesture setting that I used to go back to the homescreen. My first attempt at fixing it on Monday failed, but I managed to figure out part of the problem. On Wednesday I tried again, and on the fourth attempt was successful. As TeamWin recovery can’t format system without corrupting it (I don’t know why), I had to do it from fastboot to be able to reinstall my rom. The problem with full screen mode was in a setting saved to my Google account, so to fix it I had to set it up as a new device rather than using my backup. No idea what setting it was, but I’m glad to have it working properly again now. Luckily as I keep app backups using Titanium Backup it doesn’t take too long to get my tablet back to how I like it.

Watched quite a bit of YouTube this week, as well as the rockhopper chick cam at Edinburgh Zoo. I also watched Liverpool lose to Real Madrid in the Champion’s League Cup. I was upset by the two injuries, as I don’t like people being hurt and crying 🙁 I hope they’re both better soon. It was an entertaining game to watch even if the result wasn’t what I wanted.

Johan went to see a friend on Sunday, and I spoke to Sammie and watched more YouTube. Was having a decent day until just before 9pm, when a migraine started. What didn’t help was Johan giving me the medication for my overactive bladder instead of my antiemetic, which meant it took longer to get the nausea under control (as we weren’t certain which it was until it didn’t help my nausea). Luckily it’s not dangerous, just meant I had some extra side effects to deal with. We now have the medication for my overactive bladder in a dosette box which should mean it doesn’t happen again. I’ve also asked Johan to separate out the leftover once a day meds from the as needed meds to make things easier for the care workers (and for him when he’s tired). I have three different medications that are small, round, white tablets so it’s easy to confuse them.

Explanation for sleep below: I had 5 sleep sessions (with short antinaps in them for medication and pad changes, which was taken out of the duration), 4 over 18 hours and the other just over 9 hours. Technically my longest sleep was from Sunday afternoon to Monday morning at 19 hours 32 minutes, but only 10 hours 5 minutes of that was on the Monday morning and my tracker splits at midnight between Sunday and Monday.

Overall mood – Good, with a meh on Friday morning as I felt guilty that Johan saw how upset I get about being left alone.
Average daily sleep – 10 hours 40 minutes (average sleep duration: 16 hours 52 minutes)
Longest sleep – 19 hours 3 minutes from Friday afternoon to Saturday afternoon (59% deep sleep)
Clothes changed – 1 (Enthusiastic Member of the Orange Boy Fan Club sweatshirt)
Wipe wash – 1
Water wash – 0
Hair wash – 0
Books read – 1 (More Operation Hail Storm)
TV watched – Champions League Cup final. Liverpool lost.
YouTube videos watched – Tom Scott, Mr Puzzle, Jessica Out Of The Closet (including live stream of Jessica)
Streams watched – Rockhopper Chick Cam at Edinburgh Zoo
Music listened to – Rainbows and Unicorns then a Google Play Music radio based on that.
Podcasts listened to – Welcome to Night Vale (Episodes 21 – 30)
Blog posts written – 1
Penguins cuddled – Mostly Nicky, Phoebe and Poseidon 🐧🐧🐧
Johan hand holds – Demanded and receieved
Johan hugs – 0
Time on Twitter – 6 hours 14 minutes (average 53 minutes a day)
Time on Reddit – 14 hours 42 minutes (average 2 hours 6 minutes a day)
Time on Facebook – 11 minutes (average 1 minute a day)
Other –
- In case it isn’t obvious, I’m really struggling with Facebook right now. I’m only going on if I get an important notification.
- I’ve been reading more blogs again. I need to go through my reader and sort out what I’m still wanting to read, and add new ones.
- I spent 4 hours 17 minutes on my email program. Most of that was due to the GDPR spam that I deleted from my inbox. It’s been a lot quieter since Friday.
- Caught up with adding the latest care calls to my carer spreadsheet. I have a lot of different care workers, including 3 new ones this week, and a couple of others I’d only met once or twice before. So far this year I’ve had 42 different care workers, which is a lot. One call a day is a double up but still.

Game stuff

Games played – 4
- Animal Crossing: Pocket Camp
- Cross Stitch
- Neko Atsume
- Godville
AC: Pocket Camp Level – 101
Godville Heroine Level – 53 (73% done)
Godville wood for ark – 22.1%
Godville savings – 917 thousand
Cross stitch completed – 3
Most played game – Animal Crossing Pocket Camp (8 hours 31 minutes, average 1 hour 13 minutes a day)
Other –
- Continued adding stuff to my Animal Crossing spreadsheet. It doesn’t require thinking which is a good thing.
- Finished the fishing event. I’m glad I bought the golden rod as without it I would probably not have completed it with how much I was sleeping.

Monday 21st May, 2018Wednesday 23rd May, 2018 Danni

Week 20 Review

Danni, Gaming, M.E., Physical Disability, Real Life, Week in Review

I remembered to take a photo! I was rather tired but feeling silly.

This week I figured out how to listen to podcasts, and even understand them 😀 It’s a three stage process but it works for me.

Listen to the podcast on a speaker (currently my Google Home Mini). This is less overwhelming than on headphones.
Do something on my tablet that doesn’t involve language, such as cross stitch. This is to distract my brain from the auditory hallucinations that usually prevent me from hearing what I’m listening to properly.
After the podcast episode has ended, go read the transcript so I can understand what was happening and see what I missed. It sometimes takes a few reads but it does go in eventually.

I’ve spent a lot of time this week listening to Welcome to Night Vale, which is the podcast I’ve been wanting to listen to since I first heard of it. I’m really enjoying it, and have also got Johan listening to it. Only problem is I’m a bit ahead of him so I’m having to try and remember what would be spoiling him 😛

Bodywise it’s been a mixed week. Still no sign of an actual sleeping pattern, and had more digestive issues than my normal which isn’t fun. Johan has also had a mixed week, mostly because he had to fill in my ESA50 form (explaining that I’m not well enough to work so we keep getting money) and it made his brain break. On the upside, he ran the Pier to Pier race and did really well, then stayed out with his friends until the evening as I’d gone to sleep.

Wheelchair fixy person came out to look at my wheelchair, and has taken the broken bit with him in an attempt to find a matching part. Not heard back from him yet, but I’m hoping he’ll be successful as I’m hoping to get out of bed soon, especially as the weather is getting nicer.

I started having the new afternoon care call this week, so I don’t have to call Johan home as early unless something goes wrong. It’s the first time the care workers are giving me medication, which is fun as I try to describe which ones I need (as technically my tramadol is as needed, so doesn’t go in a dosset box). I’m thinking of asking Johan to put it in my pill box so it’s easier for both of us, especially when I need my antiemetic as small round white pills are hard to tell apart and the writing on the blister packs is very small.

The calls seem to be working, though I had a new care worker who hadn’t been told I don’t cope with them being early (I can just about cope with up to 15 minutes before the call time, she arrived 20 minutes before) so I ended up panicking, but luckily Johan was in at the time so he explained things to her and helped sort me out afterwards.

Friday was four years since the last time I stood up (and took three wobbly steps with a zimmer frame). I was really hopeful that it was the start of improving, but I ended up getting worse again soon afterwards. Between that and the ESA50 form, where Johan ended up telling me I’m doing worse now than I was last time, it’s been a little hard realising how long I’ve been ill for and that I’ve not really improved. I have stabilised a bit, as though I still get payback in general I spend less time paralysed and can usually manage to chew solid food, so except during relapses I don’t get quite as bad. I suspect not having noisy neighbours helps a lot with that as I can mostly rest when I need to. It hasn’t really affected my mood, just made me think.

Bought a new wrist support as floppiness was getting really annoying, after asking for suggestions on Twitter. It definitely seems to be helping, and on a good hand day I’m going to see if I can use it with cutlery to feed myself without making it harder the next day. Here’s hoping.

Overall mood – Good
Average daily sleep – 10 hours 1 minutes
Longest sleep – 17 hours 42 minutes from Friday morning to Saturday morning (62% deep sleep)
Clothes changed – 1 (Trans and Tired)
Wipe wash – 1
Water wash – 0
Hair wash – 0
Books read – 1 (Continued Operation Hail Storm)
TV watched – 0
YouTube videos watched – 0
Streams watched – 0
Music listened to – Rainbows and Unicorns
Podcasts listened to – Welcome to Night Vale (Episodes 1 – 20)
Blog posts written – 1
Penguins cuddled – Yes 🐧🐧🐧
Johan hand holds – Lots demanded and received
Johan hugs – nope
Time on Twitter – 3 hours 35 minutes (average 30 minutes a day)
Time on Reddit – 23 hours 32 minutes (average 3 hours 21 minutes a day)
Time on Facebook – 25 minutes (average 3 minutes a day)
Other –
- Sorted out the bags on my bed rails. Somehow managed to get a full carrier bag of rubbish out of them. Hopefully this will stop me losing things quite as much.
- Finally got around to plugging in the electric blanket on the other side of the bed. Not being strangled by the cable when having personal care is good.
- Having a default list of meals came in handy when Johan’s brain broked. I was able to order him food from McDonalds without him having to decide.
- Sammie is awesome. She made curry and invited us to eat it. If only we weren’t so far away.
- My phone decided it wanted to become a balloon, so I had to stop using it. Johan gave me his old Oneplus 3 instead, which I used to take the photo.

Game stuff

Games played – 5
- Animal Crossing: Pocket Camp
- Cross Stitch
- DragonVale
- Neko Atsume
- Godville
AC: Pocket Camp Level – 99
Godville Heroine Level – 53 (73% done)
Godville wood for ark – 22.1%
Godville savings – 917 thousand
Cross stitch completed – 5 (easy to do when listening to podcasts at the same time)
Most played game – Cross Stitch (9 hours 7 minutes, average 1 hour 18 minutes a day)
Other –
- New animals in Animal Crossing and a new fishing event. Managed to do most of the fishing event on the first day as couldn’t sleep.
- Added random stuff to my Animal Crossing spreadsheet as I like doing data entry. Currently working on how many of each type of clothing I have.

Thursday 17th May, 2018 Danni

Week 19 Review

Danni, Gaming, M.E., Physical Disability, Real Life, Week in Review

Forgot to take a photo (or have one taken) but I screenshotted completing the last flower event so it’s virtual me.

Had a good week. Mostly watching YouTube videos and Eurovision (both semi finals and the final). Overdid it a bit watching Eurovision but the payback is worth it (though led to this post being rather late). I enjoyed most of the performances during Eurovision, and didn’t have a specific favourite, but was okay with the results. Surie did amazing during the stage invasion and I agree she didn’t need to perform again. Johan was hoping for Moldova to win, and I think they had the best stage performance. We’re both concerned about the competition being in Jerusalem next year, and think it should be in Tel Aviv instead.

I couldn’t feel my feet properly on the Saturday, so I took advantage of it and asked Johan to help me get some of the buildup of dry skin off my feet (the care workers are so scared of hurting me they don’t use any force, so I end up with yellow hard patches as I’m not well enough to wash regularly). It feels so much nicer to have it all removed. Next up is all the dry skin on my scalp, but that tends to be more sensitive. I’m hoping to get at it before my hair grows too long.

Wheelchair is still not fixed as the wheelchair fixy people are struggling to find the right parts. Hopefully we’ll hear back from them soon. I’ve not really been well enough to go out anyway, especially with watching Eurovision.

Overall mood – Good
Average daily sleep – 11 hours 3 minutes
Longest sleep – 14 hours 57 minutes from Sunday morning to Sunday evening (Deep Sleep 59%)
Clothes changed – 1 (Space Rhino from Vostok Inc.)
Wipe wash – 1
Water wash – 1 (feet only)
Hair wash – 0
Books read – 1 (Started Operation Hail Storm)
TV watched – Eurovision (both semis and the final)
YouTube videos watched – Mr Puzzle and Tom Scott
Streams watched – 0
Music listened to – Rainbows and Unicorns, Hank Green
Blog posts written – 1
Penguins cuddled – Mostly Phoebe and Nicky, but some Poseidon and Primrose 🐧🐧🐧
Johan hand holds – Yes!
Johan hugs – nope
Time on Twitter – 7 hours 35 minutes (average 1 hour 5 minutes a day)
Time on Reddit – 11 hours 52 minutes (average 1 hours 41 minutes a day)
Time on Facebook – 36 minutes (average 5 minutes a day)
Other –
- Managed to feed myself with a spoon. Result was a less functional hand the next day. Whoops.
- Banana sammiches are yummy. Had them a few times.
- Mini stroopwafels are the best.
- Smelly care workers are not good for Danni at all. Triggering an allergic reaction is impressive since I take a daily antihistamine, but really unpleasant. Johan has asked for her not to be sent again but has yet to get a response back.

Game stuff

Games played – 4
- Animal Crossing: Pocket Camp
- Cross Stitch
- Neko Atsume
- Godville
AC: Pocket Camp Level – 96
Godville Heroine Level – 53 (37% done)
Godville wood for ark – 21.4%
Godville savings – 883 thousand
Cross stitch completed – 1
Most played game – Animal Crossing: Pocket Camp (9 hours 12 minutes, average 1 hour 18 minutes a day)
Other –
- Spent lots of time on Animal Crossing to finish the event. Did so with about half a day left.
- Didn’t play much of other games due to using all my energy on Eurovision.