Category: M.E.

Danni

Week 3 Review

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

Danni is lying in bed, with an eye mask on their head pushing their hair upwards. They are trying to wave and smile, but it's not effective. The picture is tinted purple due to the light. Danni is lying in a day bed. Their eyes are closed and they have a massive grin on their face. Danni is lying on a day bed. They have a huge smile and are sticking their tongue out.

I spent most of this week feeling pretty bleh, mostly due to payback from Esther’s visit. I ended up turning my alarms off as waking up for the care calls was meaning I wasn’t getting enough sleep. I wasn’t well enough to have much done anyway- was in too much pain for washing or changing clothes so it was mostly just pad changes, food, drinks and penguins. The first photo (that Johan took) was pretty typical for most of the week.

On Friday I started feeling a little bit better. I ended up staying awake a long time, which normally comes just before a change in how I’m doing (either good or bad). By the early hours of Saturday I felt well enough to sit up in bed more than I have in months, so I knew I was over the worst of the relapse and payback. I had a long sleep from Saturday afternoon to Sunday morning, and once I’d gotten over the waking up awfulness I knew I was doing better.

I sat up really high for me in bed, to the point where Johan said it looked like I was actually sitting up! (Normally my sitting up still looks like lying down to most people, just not flat). As I was managing that without any issue, and I was no longer feeling horrendous whenever I moved, I asked Johan to take me into the living room. After a bit of grumbling he did it, and it was amazing! It had been over 4 months since the last time I got out of bed at all, and it felt really weird being in a different room. I didn’t want to push it too much so was only in my wheelchair to get me into the living room then I went on the day bed in there, but it was awesome being in the same room as Johan and having a different view. Until it got too dark I could see the snow falling outside which was really cool. The second and third photos were taken in there, Johan taking the second and me the third.

Johan went to the gym for a run, after checking I’d be okay staying in the living room (I promised I wouldn’t fall out of bed- the cushion tends to stop me). I mostly just played mobile games and read Reddit while in there, which is the same as what I do normally in bed but the different surroundings made it so much better. He arrived home just after the care workers came for my evening call, and they were very confused when I wasn’t in my bedroom. They changed the sheet on my bed (much easier to do when I’m not in it, and desperately needed as I hadn’t been well enough to have it done since Christmas), hoisted me back into my chair and then from my chair into my normal bed, and then it was just the normal personal care and food and penguins. I’m still on a big high from it, and will see how I do over the next few days before deciding what next.

I’ve got my PIP tribunal at the beginning of February, so I’m probably not going to go out before then (as we said I’d be there). I’m hoping to manage being in the living room at least again before then. If I don’t, at least I’ll be able to remember I did it this time 🙂

As you can imagine right now I’m super happy. What also helped with that is that yesterday was Penguin Awareness Day. We should all be aware of penguins and how awesome they are.

Now for my normal stuff.

  • Overall mood – Good, with a couple of mehs (when I felt particularly rotten) and a couple of excited/amazings (being well enough to get out of bed!)
  • Average daily sleep –  8 hours 3 minutes (of 9 hours 51 minutes trying) – a big improvement
  • Longest sleep – 11 hours 46 minutes from Saturday evening to Sunday morning (of 16 hours 1 minute trying)
  • Clothes changed – 0 (Was too ill until today, and prioritised going in the living room)
  • Wipe wash – 0 (same reason)
  • Water wash – 0
  • Books read – 0 (I really need to pick a book to read next. I just get overwhelmed by choice then go back to Reddit :P)
  • TV watched – 0
  • YouTube videos watched – 2 (Penguin videos for Penguin Awareness Day)
  • Music listened to – Do It For Her from Steven Universe. I tried to listen to some more songs but gave up after a couple of minutes.
  • Blog posts written (including this) – 1
  • Penguins cuddled – many 🐧🐧🐧🐧🐧
  • Johan hand holds – plenty
  • Johan hugs – 1 (While I was in the living room I had the best cuddle from Johan. It made an already awesome day even better.)
  • Time on Twitter – 11 hours 48 minutes
  • Time on Reddit – 19 hours 18 minutes
  • Time on Facebook – 53 minutes
  • Other –
    • Tried the giant banana from the massive sweet box. It was disgusting 🙁 I was very disappointed.
    • Super proud of Sammie for how she’s handling stuff (being a teenager is hard).
    • Johan read the 25% ME Group magazine to me. I need to figure out renewing my membership.
    • Got a new calendar from DoodleCats. Is adorable. Need to find command hook to put it up.
    • I think I’m finally over the relapse! It’s so nice to feel more like Danni-normal! I’m hoping I don’t get too much payback from going into the living room.
    • I wrote this blog post on my Surface tablet. So much easier than on Android, especially as it has a keyboard. Photos are particularly hard to do as the app sucks for it.

Game stuff

  • Games played – 5
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • Neko Atsume
    • Godville
    • DragonVale
  • AC: Pocket Camp Level – 65
  • Godville Heroine Level – 47 (69% done)
  • Godville wood for ark – 3.1%
  • Godville savings – 167 thousand
  • Cross stitch completed – 2
  • Most played game – Animal Crossing: Pocket Camp (22 hours 27 minutes)
  • Other –
    • The second stage of the butterfly event in Animal Crossing:Pocket Camp is really frustrating. Luckily I have some very kind friends who leave me lots of butterflies so I only need 5 more gold winter ones to complete.
    • I’ve had to make a list of everyone who is gifting me butterflies so when I do catch them I can share with them. Feels bad that for every 4 or 5 they give, I only catch 1 so can’t return as many.
    • Got my first level 20 animal in AC:PC. Tex is a cute penguin 🙂
    • Finished all the free cross stitch patterns, and used some of my coins to buy the first cat pack. The first one I did is an orange cat who isn’t as awesome as Bilbo but still pretty. Bonus cross stitch picture below.
    • I’m considering taking a break from DragonVale once Bring it Back is over. I’ve got all the main dragons and eggs, and the rift is a bit overwhelming. I’ll probably return for the next event.

A virtual cross stitch picture of an orange cat.

Danni

2018 Week 2 Review

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

A photo of Danni's face. Their head is resting on a pillow. The entire image is tinted purple from the light in the top right corner. A photo of Danni lying in bed, wearing a dark t-shirt with blue penguins wearing space helmets. They are smiling.

I’ve been a very tired penguin, and have not been sleeping as much as I’ve been wanting. These may be related. I’ve also been hallucinating quite a bit. When it’s hearing Johan calling me when he’s not home, it’s pretty easy to figure out it’s not real. The phone or doorbell ringing are harder. Music helps, but I have to be careful as it can easily be overwhelming.

Johan has been doing a lot of running, including a marathon today that he ran faster than anyone else doing a marathon there. He is happy. I am proud!

Main event was getting a visit from Esther today! Thank goodness for adrenaline. Totally worth it even if I get payback from it. I’m hoping to be well enough to have more visits soon.

Two pictures this week – an attempt at a selfie in my normal (purple) light conditions, then a second where I made the light white for a minute. White light is very bright. Having the light behind me is excellent for not being overwhelmed but not good for selfies.

  • Overall mood – Good 😊
  • Average daily sleep – 6 hours 44 minutes (of 10 hours 22 minutes trying)
  • Longest sleep – 8 hours 41 minutes from Wednesday night to Thursday morning (of 11 hours 40 minutes)
  • Clothes changed – 1 (Space Penguins. Because Space Penguins.)
  • Wipe wash – 1 (And was much more painful than expected)
  • Water wash – 0
  • Books read – 0
  • TV watched – Small amount of BBC News when trying to find out if Hawaii had a missile headed towards them (they didn’t)
  • YouTube videos watched – 0
  • Music listened to – Darwinia soundtrack, Spirited Away soundtrack (now my default when hallucinating and am home alone)
  • Blog posts written (including this) – 1
  • Penguins cuddled – lots 🐧🐧🐧
  • Johan hand holds – lots (and a Esther hand hold too!)
  • Johan hugs – 0
  • Time on Twitter – 4 hours 45 minutes
  • Time on Reddit – 10 hours 46 minutes
  • Time on Facebook – 1 hour 10 minutes
  • Other –
    • Received massive box of sweets with a giant foam banana
    • Esther visited!
    • Sammie been sending lovely messages
    • Attached Velcro to my tablet and bed rails so I can easily hang it up when I’m not using it (my bed rails are very tall)
    • Care worker who had been here multiple times before asked if I liked penguins. We’re trying to figure out how on earth she didn’t notice before

Game stuff

  • Games played – 6
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • Neko Atsume
    • Godville
    • DragonVale
    • Infinity Loop Premium
  • AC: Pocket Camp Level – 62
  • Godville Heroine Level – 47
  • Godville wood for ark – 2.2%
  • Godville savings – 123 thousand
  • Cross stitch completed – 6
  • Most played game – Animal Crossing: Pocket Camp (22 hours 30 minutes – I might be a little obsessed)
  • Other –
    • Got a new pet in Godville, a Lightsaber-Toothed Tiger called Sandy. They’re level 5.
    • Building third tier rustic amenity in AC:Pocket Camp. Once that’s finished I can level all the animals to level 20.
    • Also enjoying the new butterfly event in the garden. I have so many people giving me butterflies I’ve already completed the diamond butterfly goals and am one away from the topaz ones. I think I won’t have a problem getting everything in the event.
    • Completed all the New Year cross stitch patterns. Now finishing the free ones before deciding which to buy with my coins next.
Danni

2018 Week 1 Review

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

A virtual cross stitch pattern, mostly pink and purple with large white numbers saying 2018.

Danni is lying in bed, wearing a purple t-shirt with a picture of the top half of an orange cat's face (Bilbo), with orange boy fan club written underneath in white. I’m wanting to blog every week, as I use my blog as a reminder of what I’ve been up to. This week I’ve started using a couple of new apps to track what I’m doing, and I’ve decided to use the data from there to make a blog post. I’ll probably tweak this template as time goes on and I decide what information I want to include or not. If I feel up to it I’ll add appropriate links, but on bad days I’ll leave them out.

The apps I’m using for this are Smarter Time (tracks what apps I’m using on my tablet and for how long), and Daylio (daily journal app which lets you record your mood and activities by just pressing a button). I’m also using my FitBit for sleep data. I only started using Smarter Time on the 3rd January, but from next week I’ll be using it to track how long I spent trying to sleep, as it’ll be more accurate than my FitBit for that.

I’ll also be adding my photo of the week. This week it’s one Johan took of me.

  • Overall mood – Good 😊
  • Average daily sleep – 7 hours 56 minutes (of ~11 hours trying)
    Clothes changed – 1 (Orange boy fan club t-shirt)
  • Wipe wash – 1
  • Water wash – 0
  • Books read – 1 – Slightly Higher Interval Training for 5K runners (or Run 5k in under 20 minutes on Goodreads for some reason)
  • TV watched – New Year Fireworks in London
  • YouTube videos watched – 3
  • Music listened to – Enya, Paramore, “relaxing” instrumental playlist (I disagree with Google on what counts as relaxing – it included the Game of Thrones theme)
  • Blog posts written (including this) – 4
  • Penguins cuddled – lots 🐧🐧🐧
  • Johan hand holds – lots, but wanted more
  • Johan hugs – 0 (I can’t wait to be well enough again)
    Time on Twitter (since 3rd January) – 5 hours 1 minute
  • Time on Reddit (since 3rd January) – 5 hours 33 minutes
  • Time on Facebook (since 3rd January) – 1 hour 14 minutes
  • Other –
    • Cleared snack box of rubbish
    • Automated app backups
    • Ate chocolate igloo Johan smashed (called the DWP)
    • Maybe I’m finally getting over this cold?
    • Read short Fusbyverse story on Reddit.

Game stuff

Danni

Goals for 2018

Danni, Goals, M.E., Physical Disability, Real Life

Last year I decided to make some goals for the year. It’s time to make some new ones, but first to see how I did with the ones from last year.

  • Have a shower at least once every 2 months – This didn’t happen. I think I managed one shower all year. A mixture of reasons, but mostly not being well enough.
  • Use the toilet/commode – Still not managed this. I’m hopeful for this year though.
  • Go out with Sammie somewhere – Partial win. I went to see her school play, though she didn’t know I was there until after. Worth it though.
  • Create and keep to a rough daily routine – One I managed! I have it set up in Habitica. Most days I manage everything on it, and it has helped my anxiety quite a lot. I might blog about it sometime.
  • Read at least 20 books – I was doing well with this until I went into the care home, then I took 5 months to read 1 book. I think I ended on 15 (Goodreads counted one of them twice for some reason). Could be worse.
  • Sort out my clothes – This hasn’t happened yet, but I’ve bought some vacuum bags and a pump and the cleaner comes 2 hours a week now, so hopefully it’ll get done this year.
  • Sort out our letters – Complete fail. I have folders, just need to be well enough to do it, which hasn’t happened yet.
  • Spend more time in the living room – I think I managed this, though it’s hard to tell as it’s been a few months. New day bed is awesome though.
  • Sort out computer stuff – Partial win. I haven’t sorted out the blog much, but I’ve made progress on organising important files and my photos.
  • Go out with Johan somewhere that isn’t shopping or for a meal – Win! We saw Sammie’s school play together.
  • Create a guide to looking after me – Almost done. Only thing I need to add is where things are kept, and since I can’t do that bit without help I’m thinking of just printing what I have and finishing it when I can. It’s already been useful.

Of the 11 goals I had, I completed 3, partially completed 3 more, and failed 5. Could be worse.

New goals for this year:

  • Shower at least twice – as every two months was too optimistic, I’ll reduce it to double last year. Any extras will be a bonus.
  • Use the toilet or commode – I’ll keep adding this until it happens 😛
  • Go somewhere with Johan that isn’t shopping or a meal – I like this one so am repeating it. Hopefully I’ll manage something more pleasant than my PIP tribunal, but just in case I’m not well enough for something else I won’t exclude it.
  • Read at least 20 books – I’m just about able to read again now, so I’m hoping to manage it this time. Hopefully there won’t be a repeat of the care home situation that really broke my brain for months.
  • Spend quality time with Sammie in person – she’s my favourite person, so even if I’m stuck in bed I want to spend time with her. Hopefully it’ll be somewhere out though.
  • Watch a film – I didn’t manage any films in 2017, so I’m hoping to fix that this year.
  • Sort out my blog – I’m wanting to update my blog roll, work on categories and tags, and maybe even change the theme. Luckily I can do this from bed.
  • Track my daily activities – I’ve found a couple of apps to help me with this, and I’ve managed so far this year. This is mostly so I can see when I’m doing things like having a wash or getting out of bed so I can prioritise what I need to do when I’ve got the energy for it.
  • Blog every week – ambitious, but I’m creating a template that means if I’m really ill I just need to answer the questions, and I can use my daily tracker for the answers. I use my blog to remember when things happened and that’ll be much easier if I’m posting regularly.
  • Take a selfie or have a photo taken every week – I am trying to feel better about myself and how I look, and hopefully this will help. I can use it for my weekly blog post, too.
  • Try not to feel guilty when avoiding bad news I can’t change – there’s a lot of bad news at the moment, and some of it makes me very anxious. When there’s something I can do about it, I want to do so, but it helps no one if I’m worrying about things I can’t influence. I’ve gotten better at not reading the news when I’m not able to cope with it, but I need to work on feeling guilty about it.

I think that works. I’m still going to try and organise my clothes, the letters and other stuff, but as I need a lot of help from other people I’ll count them as bonuses if I manage them.

Danni

2017 in Review

Danni, M.E., Penguins!, Physical Disability, Real Life, Review

Every year since I started this blog, I’ve done an end of year survey. I’m going to keep almost the same questions as last year, but if there are any I can’t answer two years in a row then I’ll change them next time.

1. What did you do in 2017 that you’d never done before?
Went to Sammie’s school play. It was the first school event of hers I made it to, so a very big deal.

I also joined Running Ninjas, which is a running club. It turns out you don’t actually need to be able to run (or even get out of bed) to be a member. It’s the group Johan is part of and I love seeing how everyone is doing.

2. Did you keep your New Year’s Goals, and will you make more for next year?
I managed some of them, but not all. Going to have a separate post with specifics.

3. Did anyone close to you give birth?
Yes. Laura’s baba is gorgeous!

4. Did anyone close to you die?
As last year, no-one I was very close to, but some people I knew, and others I admired but was too ill to contact. And our upstairs neighbour, who was physically close.

5. Where did you visit?
South Tyneside Hospital for getting teeth sorted. Gateshead and Newcastle. Sammie’s middle school for her school play. Care home. I also went and watched the Great North Run on the Felling Bypass.

6. What would you like to have in 2018 that you lacked in 2017?
Better health. More showers please.

7. What will you most remember from 2017 and why?
Getting new, much nicer neighbours. The old neighbour being murdered. Seeing Sammie’s school play. Going to the Great North Run and seeing Mo Farah, Aly Dixon and Johan running really really fast!

8. What was your biggest achievement of the year?
Going to Sammie’s school to see her play. It was the furthest I’d travelled in at least 6 years, possibly more.

9. What was your biggest failure?
Probably not having a single bath while in the care home. That’s because I was using all my energy on bedding changes as they weren’t checking on me enough. Also only getting standard daily living PIP with no mobility because I can walk and don’t need care apparently (tribunal is in February). Having to give up loom knitting as my hands wouldn’t cooperate.

10. Did you suffer any new illness or injury?
I caught a cold while recovering from going out to see the Great North Run. Then another, and then another. So I’m doing worse both physically and cognitively than in 2016. It sucks.

11. What was the best thing someone gave you?
Penguin fairy lights from Jen. Little abstract paintings from Mathsie. Penguin pillow/handwarmer from Sammie. Purple sparkly crystal thing from Johan. Crochet penguin from Tony and his wife. And I’d had more. I’ve been completely spoilt this year.

12. Who impressed you this year?
Johan with the progress he made with his running, including two full marathons and lots of half marathons. Sammie with how much she cares about her friends and for seeking help when the situation was too big to handle alone. Everyone who survived despite how terrible a year it was.

13. What made you appalled and/or depressed?
I might not have liked my old upstairs neighbour, but he didn’t deserve being murdered the way he was. Politics in general. The DWP both in general and for the PIP decision they made (they acknowledged I can’t sit up or stand, but say I can walk. And I don’t need carers, just aids and adaptations. They still haven’t explained how that works with me being almost completely bedbound). TERFs. Bigots.

14. Other than food, bills and disability stuff, where did most of your money go?
Technically disability stuff, but I bought a new tablet which is awesome. Also Philips Hue lights and a Google Home Mini, so I can do funky stuff with my lights and control them via my tablet or voice. Sammie’s computer took most of my savings, so need to build them up again 😛 Was worth it for how much she’s enjoying it.

15. What did you get really, really, really excited about?
Sammie’s school play! Great North Run! Friends doing awesome things! Johan getting better at running and getting medals! Penguins! Cats, especially Bilbo, Tilly and Erica! Ratties! Bunnies! Animals in general! Space!

16. What big events will you remember most from 2017?
Trump. The lack of of plans for Brexit.

17. Compared to this time last year, are you:
a) happier or sadder?
About the same.
b) healthier or more ill?
More ill. A cold really knocks me around – three in a row and some days it’s an achievement just to wake up.
c) richer or poorer?
Poorer. Standard daily living PIP is much less than higher/higher DLA. Johan now gets more PIP than me. If it weren’t for that, we’d probably be struggling much more.

18. What do you wish you’d done more of?
Getting out of bed. Showers, bed baths and hair washes, as been too ill most of the time, especially since September. Communicating with friends.

19. What do you wish you’d done less of?
Being anxious. Panicking. Hallucinating (I suspect due to not sleeping well). Feeling ill.

20. How did you spend Christmas?
Opened presents, slept, had Christmas Dinner Johan made in the afternoon (roast duck, and his roast potatoes were even better this year). Watched the Doctor Who Christmas special with Johan. Video chatted with Sammie. It was a good day.

This year our tree had lights (it’s a fibre optic tree as our old one broke), decorations and a penguin on the top! Then 10 minutes later the penguin fell off. Need to think of penguin securing methods for next year.

21. What did you love in 2017?
Other than Johan, Sammie, and family, seeing friends and people I like achieving their goals. Also cute animals, including penguins 🐧

22. How many trips out?
A few in the first half of the year. After coming back from the care home at the beginning of August I only just recovered enough to watch the Great North Run, and then I caught colds so I’ve been completely bedbound since then.

23. What was your favourite TV programme?
Steven Universe. I managed to catch up with season 3. I’m looking forward to watching season 4 as soon as I’m well enough.

24. Do you dislike anyone or anything now that you didn’t dislike this time last year?
Most people who are awful now were already awful. My PIP assessor and decision maker though I dislike for their blatantly wrong decision.

25. What was the best book you read?
Hard one. I liked The Girl who Circumnavigated Fairyland in a Ship of her Own Making, and Feeder. I can’t remember enough of any of the books I read to decide on a favourite.

26. What was your greatest media discovery?
I didn’t watch any films this year, see any new TV shows, or listen to any new music. Do video games count? I liked watching Johan play Vostok Inc., but as he’s the QA guy he knows the game very very well. When I can hold a controller I’m wanting to play myself.

27. What did you want and get?
I got to see Sammie’s school play, which was amazing. I also got to see the Great North Run, which I’d been wanting to go to since I moved here (the route goes past about 15 minutes away).

28. What did you want and not get?
Baths in the care home. More showers. Despite many hints, no flowers from Johan 😛 I also had to give up my World of Warcraft subscription as I was too ill to play.

29. What was your favourite film of this year?
I’ve not seen any films this year, as have been too ill. I’m hoping to change that next year.

30. What did you do on your birthday?
Spoke to Sammie on video chat! Got awesome presents! Played with a light up balloon! Had cake a few days later.

31. What one thing would have made your year immeasurably more satisfying?
Not relapsing. It sucks.

32. How would you describe your personal fashion concept in 2017?
Comfy, purple, penguin and cut up fleecy pyjama tops. Being able to put my fleece on and off by myself makes me happy, even if it does look weird and untidy.

33. What kept you sane?
The usual (Johan, Sammie, friends, penguins). Twitter. Pictures and videos of cute animals. Chocolate.

34. Which celebrity/public figure did you fancy the most?
I can’t think of anyone. I do fancy a few people, but they’re not public figures.

35. What political issue stirred you the most?
Brexit and Trump. It seems every time I look it’s gotten worse.

36. Who do you miss?
Other than Sammie, Johan and my friends when I can’t talk to them, I’ve really missed Ron this year, especially when I’ve been feeling worse.

37. Who was the best new person you met?
Online, probably Ellen (and Bilbo), though it’s very one sided (I follow them, but I have had a note when buying things). The only notable person I can think of who I met offline was Sammie’s favourite teacher at middle school. Some of the care workers from the new care agency are also awesome.

38. What was the best thing you ate?
Johan’s potatoes were even better this year. So them.

39. Tell us a valuable life lesson you learned in 2017?
Do things you want when you can, as there’s no guarantee you’ll be able to do them in the future. Also, Tories are evil.

40. A quote that sums up your year:
“Braaaaains.” – me in zombie brain fog mode. Which is most of the time.