Category: Penguins!

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.

Danni

Happy New Year!

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

I hope everyone had a good Christmas/holiday period, and that this year is better than the last.

I’m still not doing amazingly. Caught another cold before I’d recovered from the last one, so haven’t got out of bed since the Great North Run in September. Despite this, I had a lovely Christmas, and was thoroughly spoilt.

Johan bought me this amazing purple glittery crystal thing, that is sparkly. I’m hoping to find somewhere to put it that has a light shining on it so I can see it properly. He also got me some sheets which is very practical when bed bound 😛

Sammie came over on Christmas Eve, which was the best present from her, especially the hug. She also brought me gifts, a wall sticker of some penguins swimming through a port hole, and this huge penguin cushion that’s also a hand warmer. She got Johan (now also called Dad2) a t-shirt saying “I am currently unsupervised. I know, it scares me too, but the possibilities are endless!”. Both of us were extremely happy. Sammie’s grandparents gave me a chocolate penguin and chocolate smashable igloo, and Johan some running socks. That was awesome of them 😊

My mum gave us a pod coffee machine. As Johan has now started drinking coffee, this is very much appreciated. If also does hot chocolate so I’ll be able to use it too. Other gifts included a hot chocolate mix and some star decorations from friends (and I think there were others I can’t recall right now). I’m grateful for all of them, and along with the many cards I received feel very loved.

Christmas day I spent time video chatting Sammie, which is always good. Johan made Christmas dinner, which was roast duck, his amazing roast potatoes (even better this year!) and the trimmings. I managed to stay awake to eat it, and also watched the Doctor Who Christmas special with Johan. Loved the episode, and it makes me want to catch up with the last series (I’d only got up to the 2016 Christmas special before). I may not have been able to get out of bed, but it was awesome.

Boxing day the payback from the last few days hit, so I spent most of the day asleep or resting. I did manage to message Sammie to wish her a happy birthday (she’s 14 now, which is kinda scary) and I think she liked the presents we got her. That’s pretty much how I spent the rest of the week, though on the Saturday Johan went to South Shields to run his 50th Parkrun, which also took him to 1000 miles ran in 2017. An awesome achievement, which I slept through so he went for breakfast and cake with his running friends.

New Years Eve I woke up in the evening, and just before midnight put the telly on to watch the London fireworks and spoke to Sammie through messenger. The fireworks were awesome to watch, even though I’m torn on whether it’s a good thing or not. Once they finished the telly went back off as it was a bit much for me, but I’m glad I got to see the pretties and virtually celebrate with Sammie.

Payback is hard to deal with, as it makes all my normal symptoms much worse and adds in new ones which isn’t great, especially when I’m already in relapse from the successive colds. It’s a lot easier to deal with though when it’s due to doing something nice. I know that with rest and patience it will pass, and hopefully I’ll be able to get out of bed and do stuff again.

Since my last blog post I bought a new Android tablet, as my old Galaxy Tab S was freezing, randomly rebooting and generally being less reliable. It had lasted 3 years including many drops and falls, so I’m happy with that. I replaced it with a Google Pixel C, which is much faster. I also bought a chunky case for it immediately, to protect it from the inevitable drops and to make it much easier to hold.

As my new tablet went on sale the day I bought it, I used some of the money I saved to buy a Google Home Mini. Within a couple of hours of playing with it, Johan wanted one so we now have two. I already had wifi plug sockets that I could control, then on Black Friday the Philips Hue starter set I’ve been eying up for years was reduced to its lowest ever price, so I grabbed that. I have one bulb in my bedroom (currently in the lamp clipped on the back of my bed) and Johan put the other two in the living room and his room. Though it doesn’t always understand what we’re saying, being able to control the lights with our voices (including my text to speech if I’m nonverbal) is amazing, and I’ve set up custom phrases to set my light to purple, make my light change colours and such. It’s also good for reminders and simple searches when I’m not wanting to leave the app I’m using on my tablet.

Our Christmas tree from last year ended up being broken, so it’s been replaced with a black fibre optic one. Johan is very happy that he didn’t need to set up lights, and I’m happy because they’re twinkling slowly enough to not make me worse and aren’t too bright. We plugged it into one of the the WiFi plugs so I can turn them on and off by myself (including using the Home Mini) and this year it was fully decorated for an entire 10 minutes! Then the penguin on the top fell off. For next year we’ll either need to get a better penguin topper or a way to secure the penguin on there, but even without it’s very pretty.

Below is my game stuff which I know is more boring 😛

I still miss World of Warcraft, but I’ve only been able to go on my computer a couple of times in the last couple of months, and on the surface not much more than that. I’m hoping once I get out of my relapse I’ll be able to resubscribe and play again.

For now I’m sticking with my tablet games. The main one I’m playing right now is Animal Crossing Pocket Camp. It’s perfect for me, as I couldn’t use the controls to play the full version on the DS, and it’s simplified so it works even when I’m very foggy. At the moment I’m level 56 (of 64), have invited all the animals to my camp, have 2 of 5 top tier amenities (which let me level up the corresponding animals to 20), and have one of every is of flower in the garden. There’s still plenty for me to do, but I can spend only a few minutes or an hour depending on how I’m feeling at the time.

I’m still playing Neko Atsume, Godville and DragonVale. Neko Atsume I’m only missing the memento from Hermyown. In Godville my heroine has just completed my temple and is now saving for retirement and collecting wood to build an ark. In DragonVale I have one of every dragon, two of all but the most recent event dragons, and am working on rift traits for the dragons that can have them.

I occasionally play Gardenscapes and Fishdom when I fancy a match 3 game. I’m also occasionally playing sudoku, but I’m much slower and it’s very frustrating now my brain is so foggy. Puzzle games are normally my favourite but I need to be able to think to complete them.

I tried colouring apps but was getting anxious as I couldn’t decide what colour to use. Then I discovered cross stitch apps and they work much better for me. They work like colour by number, so I just follow the code and it tells me if I make a mistake. Once I’ve put the right colour in it won’t overwrite it with a wrong one, which is great as my hands can be quite shaky, and I can zoom in really far if needed so the boxes are big and easy to hit. I’m really happy to have found something I can do that’s relatively low energy and helps when I’m anxious. It helps that I can add my own pictures as the one I’m currently using doesn’t have any penguins by default. Penguins make everything better.

Danni

Level 31

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

An incomplete and out of order summary of what’s been going on the last few months.

  • I had a shower! It was awesome. It still takes way too much out of me to be able to have one regularly.
  • I went out to vote in the General Election. I like our Labour MP so I voted for him. He retained his seat (as expected as this is a very safe Labour seat).
  • I had a birthday. Turned 31. Spoke to Sammie online and played with a light up balloon. Sammie made me an awesome animation and picture 🙂 Johan got me a skirt and a penguin book. I had lots of cards and also cake a few days later. I also had other presents which were much appreciated.
  • I spent a lot of time resting. More than I’d normally do.
  • Asked the district nurse to come out. Changed Derma S to Cavilon (Derma S was causing an itchy rash, which is what it’s meant to treat) and also asked about a different mattress as pain kept waking me up and I needed to roll over, which is difficult and exhausting. Got an alternating air mattress the next day. It makes a massive difference and now I can sleep for up to two hours before waking, compared to 45-60 minutes beforehand. I also don’t need to roll over as much.
  • The reason for the resting – I went to see Sammie’s school play. Until I got the new mattress I wasn’t sure I’d be able to make it, but sleeping better and all the rest paid off and I managed to see it. Sammie had no idea I was there (she knew Johan was going) and her reaction when she saw me afterwards made it all worth it. The play itself was excellent and I got to meet a couple of her teachers. It was the first school event I’ve been able to attend so it was very special.
  • Got a taxi to and from the school. Same driver both times (he stayed on shift late to bring me home). The journey went as well as it could, but when getting out near home my wheelchair went sideways off the ramp. Luckily the driver had a really good hold on my chair and it went down slowly enough that all I got was a slightly grazed hand. Johan and the driver picked me back up and I was fine. I’m not so sure about the driver though. He refused to let us pay even though it was an accident.
  • Johan has gone to Sweden again. I’m in the same care home as last year. Johan pushed me this time rather than getting the bus as I wasn’t really well enough to travel (and the movement of the bus would have been too much) but has told me he’s not pushing me back. I got pretty much straight into bed and haven’t left it. I go home next Thursday.
  • Unfortunately being in the care home hasn’t gone as well as last year. As I can’t use a buzzer (they make a horrendous noise and can make me nonverbal) I’m meant to be checked on hourly. This hasn’t always happened so I’ve ended up with a soaking bed multiple times. The worst was Tuesday night where no-one came in from about 10.30pm (when I got my medication) until after 3am when I asked someone on Twitter to phone for me. I also ended up having a meltdown on Monday as I got overwhelmed by everything. Some of the staff are really good though. I’m going to make a complaint when Johan gets back and see how they respond before deciding whether to ask to change care homes for respite.
  • I’m really struggling with asking for things I need. Being in a care home makes this worse. I wish I could do everything myself.
  • I bought a Go Pro during the Amazon Prime Day sale. Johan is planning to use it for his runs. I’ve also insisted he goes to Edinburgh Zoo on the way home from Sweden and film the penguins for me.
  • I also bought a wifi plug socket for my bedroom in the sale. Being able to control my lights  using my tablet is so awesome I ended up getting a second one (they only let you buy one in the sale for some reason). It also means Johan can control my lights if needed.
  • I’m now struggling to manage Twitter as well as Facebook, and am struggling with games I normally find easy. I think it might be because of being in the care home. Hopefully it’ll get better once I’m home.
  • I’ve had a couple of visits while here. One brought a crochet penguin his wife made for me. They’ve really helped me cope 🙂
  • I’m hoping I’ll eventually be able to write blog posts that aren’t just bullet point brain dumps. I like writing them but my brain is being silly.
  • Penguins are still awesome. The penguin cam stopped working for a bit but Johan is at the zoo on Monday so I’m hoping to see them then.
Danni

Teeth Sorted 

Autism, Danni, M.E., Mental Health, Penguins!, Physical Disability, Real Life

Yesterday I went into hospital to have my teeth sorted under a general anaesthetic. Considering I have severe ME, it went about as well as it could have.

The ambulance with the stretcher was late, but we were expecting that and I was second on the list because we knew I’d not be getting in for 8am (I probably would have been first otherwise). The journey was horrible but I listened to music to help cope with the noise (along with wearing my earplugs and ear defenders) and used Google maps to see how long it would be. Got there and was put in a side room which was good.

Not too much later we went through what was going to happen, consent and stuff. Johan filled in the forms and signed for me (I gave verbal consent for him to do everything) and they took my blood pressure and heart rate. Blood pressure was normal (higher than my normal but I was anxious) but my heart rate was bouncing around, but only between 99 and 120ish bpm so not too bad for me. When I say my heart is doing funky dances, that’s part of what I mean. Once I told them that was normal for me they accepted it.

I’d made up a personal information sheet that was two sides of A4, that we laminated as we could only find A3 lamination sheets and I was also making a communication board so put them in the same sheet 😛 I based it off a friend’s version and I think it really helped them understand me. It explained my normal difficulties, medication, what to do if certain things happened (if I go nonverbal, if I have a panic attack, etc.) and what not to do, especially sitting me up (which is normal procedure). It’s generic enough that it’ll be useful as a normal emergency sheet, and will just need updating if anything changes.

After that stuff we had a little wait, then got told off for my chocolate consumption (I think keeping my weight up is more important, and the acid reflux is probably more damaging in the long run). Johan struggled to get compression socks on me (I ended up doing one and hurt my hands, he managed the second after being shown how) and I had a gown put over my pyjamas and it was off to theatre. I took Po with me as I knew having a penguin there when I woke up would help. I also wore my sunglasses as it was really bright.

In theatre it was the usual confirmation of who I was, and then I was asked if the signature on the consent forms was mine. When I said no the guy jumped backwards and some of the other staff laughed. Then he confirmed that it was Johan’s signature and that we both knew what was happening, the risks and stuff. Next everyone but the anaesthetists left and one of them started looking for a vein in my hand. Because I had already hurt my hands earlier, the tapping on the back of my hand was absolute agony. I think it hurt more than the canulla being inserted and that’s bad enough. Fluids and meds were given, then they gave me some oxygen, then they told me they were putting me to sleep and injected a stinging liquid. Not too much later I was asleep.

Waking up I was very groggy. I remember feeling Po under my hand which helped with my anxiety, then being very shivery and then had warmed blankets put on me. That felt really nice as I became aware of it. Johan came in, and I asked for my eye mask because it was too bright with just my sunglasses. He was talking to me but I can’t really remember anything of it. They removed two teeth and filled 4 more, mostly at the back. I’m down to two wisdom teeth now.

Got wheeled back to the side room (the movement was horrendous) and the light was turned off which helped. Was still very fuzzy and I think I drifted off to sleep a few times. Was asked about pain, said my face was okay (it hurt but not too much) but my body was really bad. Was told I could have my normal tramadol and a drink and that helped. After a bit more time I was able to swap to my sunglasses and talk to Johan a bit. Asked about my teeth pain again and it was okay, so they called for the ambulance and they turned up.

The journey home was not exactly fun. They kept the main lights off in the back of the ambulance, and I listened to music with my ear plugs and defenders on. I also watched the map so I could tell how long it would be before we got home, which helped as I don’t like not knowing what is going on. When it said 1 minute from home I started feeling really nauseous, but was able to cope knowing it wouldn’t be long.

Ambulance guys got me back into my room, and Johan hoisted me back into bed (the hoist sling had stayed under me the entire time, which isn’t too bad if I’m not sitting on it). One of the ambulance guys asked us to let them know when I next need them so they can take the day off (the path and ramp from the road to our flat is very steep- everyone who has to push me up it complains) then they left. Johan gave me some more water and some jelly which helped me be a bit less hungry and thirsty, then some cyclizine a little later as the nausea wasn’t improving.

I spent the rest of the day on my tablet as so long as I didn’t move, I didn’t feel too bad. The worst pain was in the hand the canulla had been in, which I took as a good sign. It also seems my contact allergy to adhesives has improved, as the sticker around the canulla was fine (unlike last time where it was a horrible itchy rash). The ECG pads were still a bit red and itchy but not too bad.

I woke up a few times during the night, and my main problem was thirst as I was too tired to call Johan and as I’m not allowed to suck I didn’t have my hydrant (or can be used without sucking but we were worried I’d forget if tired, and I really want to avoid dry socket if possible). I was able to ask Johan eventually for some water (plus electrolyte tablet as the salts are good). He gave me my meds and once they kicked in my pain levels were back to Danni normal, which is still really bad pain but bearable.

Ended up sleeping again for a bit, then woke up as the carer came in and got annoyed that she put the washing machine on as it was too noisy. (To be fair to her, if the doors are closed it usually doesn’t disturb me too much, and she hadn’t been told not to put it on). Put my ear defenders and sunglasses on (my eye mask has ear muffs but they don’t block as much noise as my ear defenders) and that helped. I didn’t feel up to having any personal care done and wasn’t allowed to have my teeth brushed yet, so just said a few words and I’ll see her this evening.

We had our new dryer delivered this morning, after the guy who came out to do the repair due to the big fire risk thing said it would still be a fire risk after. As I wasn’t feeling too bad once I’d woken up a bit and stuff I told Johan he could test it, and though it’s pretty noisy for the first couple of minutes it then goes really quiet (to the point where the wind was disturbing me more). As I can put ear plugs in and ear defenders on we’ll be able to use it so long as I’m not in payback or relapse. It has a wetness sensor and seems to work faster than our old one, so I’m looking forward to soft warm towels and pyjamas again.

Other than a bit more tired I’m not too bad right now. Have been eating jelly, soup and milkybar desserts, and finally tried out my new cup which is designed for use lying down, has two handles and needs less tilting. I can manage it myself if I’m passed it so I’m really happy with it. Once I’m over the worst of this recovery I think I’ll be using it for hot drinks as I don’t really like using a straw for them. Until then it’ll be sugar free juice with electrolyte tablets.

I read that tomorrow will be the worst day as that’s when the swelling kicks in, and is also when my payback tends to start. I’m hoping it’s not too bad, but need to ask Johan to get some ice packs in the freezer in preparation. I’m also getting rather tired now so might nap again.

Danni

2016 in Review

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

Every year since I started this blog, I’ve done an end of year survey. This year, I finally realised that it’s my blog, so I can change the questions to ones more suited to me. I’m a bit of a silly sausage for only just realising that 😛 2016 was definitely an eventful year.

1. What did you do in 2016 that you’d never done before?
Saw Snowdogs! More in several years than ever, I went to an event with Sammie (the event wasn’t great, being out with Sammie was amazing).

2. Did you keep your New Year’s Resolutions, and will you make more for next year?
I ended up not making any. I’ve decided to swap to New Year Goals instead, but I’m still working on them 🙂

3. Did anyone close to you give birth?
There were a couple of new babies on my Facebook timeline in the last year 🙂

4. Did anyone close to you die?
No-one I was very close to, but a couple of acquaintances 🙁

5. Where did you visit?
I went into Gateshead and Newcastle, to Saltwell Park twice (once with Sammie) and to South Tyneside Hospital twice for the same appointment 😛

6. What would you like to have in 2017 that you lacked in 2016?
Better neighbours. I’m getting more anxiety and panic attacks and flashbacks now, and Johan isn’t always in to help 🙁

7. What will you most remember from 2016 and why?
Getting my shower chair and better hoist slings. Going out with Sammie 😀

8. What was your biggest achievement of the year?
Going to Enchanted Parks with Sammie was amazing. I hope to do something similar again this year (but maybe less boring and wet).

9. What was your biggest failure?
Having to admit that I’d lost the cognitive ability to manage my own finances and benefits without help. Johan became my appointee.

10. Did you suffer any new illness or injury?
Though overall I wasn’t too bad physically, my cognitive functioning declined quite a bit. I overdid it in December so ended the year feeling rather rotten.

11. What was the best thing someone gave you?
Though I love all my presents, the homemade photo frame with photo that Sammie gave me was awesome. Special mention goes to the loom band penguin and unicorn I got for my birthday 🙂

12. Who impressed you this year?
Other than Johan and Sammie, @IamMrJ’s report into ESA in poor areas was very impressive. He’s awesome. (The report: https://www.theguardian.com/society/2016/aug/09/biased-fit-for-work-tests-poorer-disabled-people)

13. What made you appalled and/or depressed?
Our upstairs neighbours. The care agency (it’s got a terrible CQC report so I know I’m not the only one having issues). The Tory Government (again). Brexit (the campaigns from both sides, the result, the murder of Jo Cox). The US Presidential Election. Bigots. Racists. It’s not been a great year in that way.

14. Other than food, bills and disability stuff, where did most of your money go?
New hobby: loom knitting 😀 Also managed to go out to eat a few times which was awesome.

15. What did you get really, really, really excited about?
I went to the Fireworks display! I went out with Sammie! Getting clean! Penguins!

16. What big events will you remember most from 2016?
Probably Brexit. I’ve got a feeling Trump’s presidency will be more 2017.

17. Compared to this time last year, are you:
a) happier or sadder?
Happier 😀
b) healthier or more ill?
Overall I’m a bit better physically. Cognitively I’ve got worse.
c) richer or poorer?
About the same right now. Will have to see what decision I get for my PIP assessment.

18. What do you wish you’d done more of?
Having showers. I managed 2 in 5 months.

19. What do you wish you’d done less of?
Having anxiety and panic attacks. Having meltdowns. Most were triggered by the neighbours, some by care workers.

20. How did you spend Christmas?
Opened presents when I woke up. Ate some goodies. Fell asleep. Spoke to Sammie and had the Christmas dinner our neighbour made when I woke up again. Stayed awake until the next morning then crashed hard. Our Christmas tree had lights and a penguin on the top this year. Maybe next year we’ll manage tree, lights and decorations?

21. What did you love in 2016?
Johan and Sammie (obviously). Penguins (also obvious). My Twitter friends. Awesome family. Those who initiated conversation with me when I became unable to initiate it myself.

22. How many trips out?
Several! Maybe not as many as I’d have liked, but I’m now definitely only mostly bedbound, not completely bedbound 😀

23. What was your favourite TV programme?
The Great British Bake Off 🙂 I think it’s the only TV show I managed to watch every episode of (excluding Christmas specials as I’ve not been well enough to see them yet).

24. Do you dislike anyone or anything now that you didn’t dislike this time last year?
I really dislike how the country has become less accepting of difference. The rise of the far right is really scary to me.

25. What was the best book you read?
Until the end of December, I thought it would be The Girl With All the Gifts. Then I was recommended Shades of Grey and that won. They’re both excellent though.

26. What was your greatest media discovery?
Probably the film Oddball, which I saw on (UK) Netflix. It’s about fairy penguins, which are my favourite real life penguins! And their doggy protector!

27. What did you want and get?
Other than talking and seeing Sammie, I managed going out (and not just for appointments), and I finally got my shower chair! I had two showers! I also got hoist slings with head support which makes hoisting much less painful. I also had two baths while in the care home while Johan was in Sweden at the end of July/beginning of August.

28. What did you want and not get?
I wanted to have more showers (silly body not letting me have more than two). I also wanted my health to improve overall, but though I’m doing better physically, I’m worse cognitively.

29. What was your favourite film of this year?
Oddball! Star Trek: Into Darkness was also good 🙂

30. What did you do on your birthday?
Sammie came over and visited! Best birthday present 😀

31. What one thing would have made your year immeasurably more satisfying?
Being able to do more. I’m happy I managed to do some stuff though 🙂

32. How would you describe your personal fashion concept in 2016?
Purple. Sometimes I wore stuff that wasn’t pyjamas, like a purple shirt and tie 😀

33. What kept you sane?
Other than the obvious (penguins, Johan, Sammie, friends), good memories helped a lot, such as memories of seeing Sammie.

34. Which celebrity/public figure did you fancy the most?
I should probably change this question but I don’t know what to 😛 I didn’t fancy anyone new, but finding out more about Carrie Fisher and George Michael meant I admired them more than I already did.

35. What political issue stirred you the most?
Probably Brexit. The whole thing was a mess and it’s not looking to get any better.

36. Who do you miss?
Sammie when I can’t talk to her. Johan when he’s out. My friends when I’m not able to communicate with them.

37. Who was the best new person you met?
I think meeting IamMrJ in person was in 2016? I’m not sure. He’s even more awesome in real life than on Twitter though, and I already thought he was amazingly awesome 🙂

38. What was the best thing you ate?
Johan’s potatoes are again unbeaten. I also really enjoyed the fudge we got from Fancy a Fudge?

39. Tell us a valuable life lesson you learned in 2016?
Too many people are willing to lie to get others to do what they want. Sometimes even evidence won’t work against it.

40. A quote that sums up your year:
“If my life wasn’t funny it would just be true, and that is unacceptable.”
― Carrie Fisher, Wishful Drinking