Jul 302017
 

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.
 Posted by at 12:26 am
Jan 112017
 

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.

 Posted by at 4:06 pm

2016 in Review

 Danni, M.E., Meme, Penguins!, Physical Disability, Real Life  Comments Off on 2016 in Review
Jan 072017
 

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

 Posted by at 12:28 am

Happy New Year!

 Autism, Danni, M.E., Penguins!, Physical Disability, Real Life  Comments Off on Happy New Year!
Jan 062017
 

Happy New Year!

I hope everyone had a good winter holiday season, and that this year will be good to you. I had a lovely time just before Christmas and on Christmas Day, but overdid it a bit and so it’s taken me a couple of weeks to recover. Annoying but nothing I’m not used to.

It’s been a busy time the last month or so. I managed to go out again a few days after my last post, going to Nando’s and then Tesco (couldn’t really go into Newcastle as the Metro was off), and lots of WoW for a bit. I did most of my Christmas shopping on Black Friday and then got payback from that so rested lots.

Tuesday 6th December I managed to go to Enchanted Parks with Sammie (and Johan and Sammie’s grandparents). The event itself wasn’t very good this year (based on Shakespeare, but there was less to do and see than last year and it was hard enough for the adults to understand) but being able to go out with Sammie made it worth it, even though it was chucking it down with rain. It was the first time I’d been able to do that in years, but next time maybe I’ll find somewhere a bit better (and less wet).

The next morning was attempt number 1 at going to the hospital for the dental surgery pre-assessment. We got there, and they couldn’t see me because I was on a stretcher (the previous week Johan spent a long time on the phone trying to tell them I was going to be coming on a stretcher, but kept getting passed around until finally arriving at a dead end). Attempt number 2 was meant to be the day after, but just before I was due to be picked up the lift on the ambulance broke (it’s kinda needed to get the stretcher in and out.

Friday morning was my PIP assessment. I was having payback from going out that week, and was non-verbal. The assessor tried to say she couldn’t assess someone who can’t speak (it’s a benefit for those who are long term disabled. And I have an appointee.) but she spoke to her supervisor and I dunno what they said but it was able to happen. Johan answered the majority of the questions for me, and I typed when I had something to add. By the end of it it was obvious to Johan I was struggling (kept hitting the wrong buttons on my text to speech app so it was saying things randomly) but I’m not sure if the assessor picked up on it. At least she seemed to understand that trying to get me to sit up was a bad idea, and I think she might have got an idea of how much help I needed by the end of it? The decision hasn’t been made yet so I just need to wait.

A week later the council came and cut down my tree 🙁 I am still sad about that, as the last few years I’ve been watching the birds out my window and seeing how the leaves change, and now I won’t be able to do that. On the 15th we had attempt number 3 at pre-assessment appointment, and though it was meant to be around 11.30am and ended up being nearer 2pm (they were in surgery longer than expected) it ended up being successful. I’m getting my teeth sorted under a general anaesthetic on the 10th of January, and I warned them about the things that I needed them to know (don’t sit me up, don’t give me paracetamol, being non-verbal isn’t anything to worry about).

Sammie came over to get her Christmas and birthday presents on the 22nd, which made me very happy. I love speaking to her. It feels weird being the mother of a 13 year old now. I also spoke to her on Christmas Day for a few hours via video chat and she showed me some of her presents. I am slightly jealous of her VR headset 😛 Our neighbour insisted on making us Christmas dinner (even though Johan tried to tell her he was cooking for us) so we ended up having one from her on Christmas day. It was nommy, even after reheating (I was asleep when it was made). Johan made ours on Boxing day (Sammie’s birthday) and that was also nommy reheated. Johan wins on potatoes though 😛 I wasn’t well enough to talk to Sammie that day but I did email her and she liked the email 🙂

For Christmas I got several penguins and penguin items (yay penguins!), a couple of new looms for loom knitting, chocolates, a handmade photo frame (from Sammie, with a photo of us two from when she was a toddler) and some smaller items. I also got so many cards that my 20 card holder wasn’t big enough so we had to find other places to put them. With that and two Christmas dinners I was very spoilt. I managed to watch the CBeebies version of the Nutcracker (which I really enjoyed even though I’m not the target audience), then the Christmas church service on telly. It was a good day even if I did end up sleeping a lot of it.

After Christmas I crashed a bit. I spent a lot of time sleeping, and when I was awake I was feeling rather rotten and out of it. New Year’s Eve Johan gave me a wash, and we had a cuddle while watching the fireworks as 2017 came in. I paid for that afterwards but it was worth it. Today is the first day I’ve been feeling well enough to do anything productive, though even this morning I was non-verbal. On Sunday our dryer will finally be made safe to use again after about a year (it was one of the ones affected by the fault that can cause lint to end up inside it and go on fire. We don’t want a fire). With having a general anaesthetic on Tuesday we’re expecting that I’ll need a lot of rest so are planning to keep things quiet for a bit afterwards. I’m hoping the payback won’t be too bad and that I don’t end up relapsing. We’ll see though.

TL/DR: I saw Sammie (twice!), there was Christmas and I spent most the time asleep or poorly 😛

 Posted by at 10:54 pm
Nov 122016
 

Physically I have got better. Cognitively I have got worse. This is not unexpected but very annoying. I am struggling to understand even simple things like my bank account and emails.

Because of this, Johan is now my Appointee when it comes to the DWP. This means he’s responsible for contacting them, filling in forms, and my money now goes into his account (which he then sends to mine because the bills come out of it, but when we’re able he’s going to be added to my account so he can manage it as well). We were worried that they’d say I didn’t need an appointee but instead they asked why it had taken so long. It was very hard for me to admit that I needed that help, and as soon as I’m consistently well enough to manage it Johan is going to hand control back to me.

Johan had his PIP renewal. We were a bit scared as it was only a 6 page “has anything changed” form and then we didn’t hear anything for weeks, but it’s been renewed again at the same rates so we don’t need to worry for now. My DLA to PIP transfer is in progress- we’ve now got the form that Johan needs to fill in. He says it’ll be easier than filling in his own, and he even managed the phone call to initiate it okay. We’re going for our usual tactic of sending tons of supporting evidence (mostly my care plans, where it says they’ll find me in bed both calls) and hope it goes smoothly.

As I’ve been doing better physically I have been out of bed a bit. I’ve been in the living room and to Newcastle (I went to the yarn shop! I bought yarn!). I saw Snow Dogs and they are awesome. I also went to the local park for the fireworks display and it was good, though people kept climbing over me while we were in the queue for food (we think they didn’t realise how long the chair was so thought there was a gap when there wasn’t). I wore my penguin onesie and was nice and warm. I’m definitely glad I managed to go, and hope to go next year. We’re planning on putting lights on my chair and skipping the food queues though 🙂

I have a shower chair now so I’ve had two showers! Showers take a lot out of me and the chair isn’t quite supportive or padded enough but person from CFS team has suggested using towels to make it better and we’re going to try that. I am so glad that it’s here now though. The main thing stopping me using it is not being awake and well enough at the same time Johan is available to shower me.

Last week we finally got my new hoist slings with head support. I’ve tried them and they make it so much easier and mean my head no longer flops backwards and my neck doesn’t get sore! We’re not sure if one will fit in my normal going out changing bag, but if not I’ll just get a bigger one.

I saw mental health team. They can’t help me because I’m not at high enough risk. Blegh. I’m both glad that I’m not that ill mentally, and frustrated that they couldn’t help even with suggestions. Last night fireworks going off made me really out of it, but I was also able to describe what was going on to Johan (he was with me at the time). I think it’s the first time I’ve been able to do that, explain what’s going on in my brain while it’s happening, but I don’t know how to stop it and I was exhausted afterwards and slept all night then all day. That was not in the plan.

I went to the local hospital for a smear test and coil change. Was funny the first time I went as they didn’t know I’d be in a stretcher, most of the information they had was wrong, and they didn’t know where to put me. They figured it out though (they had a second waiting room that had a curtained off bit- they put me there with a guard nurse at the door) and the doctor took my smear. I went back a few weeks later for the smear to be repeated as the first one didn’t have enough cells, and this time the doctor changed my coil as well as he didn’t want me having to go back there again. The second time they had two rooms ready for me- one in case I could stay on the stretcher like the first time, and since I couldn’t (the ambulance guys needed it for other people) they kicked a doctor out of his office so I could go on the only bed in the department that lies flat. It wasn’t exactly fun, but the coil change went about as well as it could have and I was in less pain than the day before, so I appreciate that. My second smear came back normal so I don’t need to worry for 3 years now, and 5 years for the coil. I’ve been a bit crampy and moody since but hopefully that’ll calm down in the next few weeks.

I have a hospital appointment at the beginning of December about my dental surgery. It’s going to be at a further away hospital, which will be the furthest I’ve travelled in over 4 years. Hopefully it won’t take too much longer after that to have my broken teeth removed- one of them has had a temporary filling in for over a year.

I’ve been playing a lot of World of Warcraft since Legion came out. I’ve done all the current quest lines, got all three artifacts for my Priest, and am concentrating on levelling my Discipline one. I’m okay doing most World Quests, LFR and normal dungeons. I’m too scared to try heroic or mythic dungeons yet, though since I have a 853 item level I am geared enough. Part of the problem is that I don’t really know how to heal with the new Disc system- in LFR it doesn’t matter too much if I’m not sure what I’m doing as there are other healers, but in a dungeon I’m the only one. I’m considering learning Holy for it, but I think I need my brain to work better first. WoW is a lot of fun though, and I’m glad I’m able to spend a decent amount of time in it (mostly at night while Johan is asleep).

The biggest problem my cognitive issues is causing is I can’t initiate conversation now. I can know what I need to say and who I need to say it to, but without a prompt I just can’t do it, and I don’t know how to explain that. Replying to someone is easier but still really difficult, especially if I don’t know the person that well. I’m also muddling up or forgetting words and stuff much more these days, which if nothing else gives Johan something to laugh at (as he hears most of them). It’s so frustrating needing to do something but not actually being able to do it, even though I technically know how.

Johan is now very busy. He’s in Newcastle 3-4 times a week now, and he’s taken up running so does the 5k park runs most Saturday mornings, and goes to the gym when he can to do more running. If I’m asleep at the wrong times, I sometimes don’t see him for more than a few minutes while he sorts me out in between stuff and sleeping. Both the exercise and being out regularly is helping him a lot, and what he’s doing now might lead to a career in the future. I struggle quite a bit if I’m awake while he’s out, but it’s mostly feeling vulnerable- if something happens, I can’t do anything about it. It also means my pads leak more which isn’t fun. We’ve asked our social worker to change the call times so I’m not left alone for quite as long (the morning call moved to lunchtime so Johan can sort me out before he leaves then the carer can sort me out a few hours later) and also for the evening call to be made much later so I don’t need to cancel it whenever I’m able to go out. He’s put the request in but I don’t know how long it’ll take.

The agency finally stopped trying to send the bad carer in October. It took my social worker putting it in the contract not to send her before they’d stop. I’ve had several carers say they’d happily do those calls if asked, so it’s not that no-one wants to deal with me, but they kept insisting she was the only person available. I’ve still not heard anything about my official complaint (that I put in during July) so once everything else has calmed down we’ve got that to chase up. It’s the usual problems we’re having with the care agency now- most of the carers are lovely and do their best, but there’s a complete lack of organisation and communication, and I still don’t get rotas so get panicky every weekend as I don’t know who’s coming.

At some point I need to see my GP as my antiemetic has started causing tachycardia and palpitations, which stops me sleeping and is very uncomfortable. I can reduce my heart rate manually for a bit (by holding my breath and tensing my muscles- I discovered it myself years ago when I thought I was panicking but was actually having POTS attacks, and it turns out it’s an actual treatment) but it eventually goes back up and the palpitations stay. I’ve been on it for several years without problem so I’m really annoyed this has started now, as it was the third one I tried and I really like not vomiting. Hopefully we can fit it in around Johan being out all the time.

I’ve now written a blog post that’s too long for me to read. That’s probably a sign I should publish it. Hopefully there aren’t any massive mistakes in it.

 Posted by at 7:12 am
Jul 092016
 

I somehow can’t quite believe that I’m now 30 years old. As my life basically went into standby 5 years ago, I don’t feel much older than I did then.

Had an up and down month. Body misbehaving. Another period (I think there were 2 weeks between them). Neighbours fighting at night. Care agency problems. Meltdowns. Hypersomnia. Talking to awesome people online. Watching lots of penguins. Finally watching Star Trek: Into Darkness (a present Becca got me yonks ago). Overall I’m doing okay, but I still wish I could be doing better.

My birthday was really awesome. The best present I got was Sammie coming over for a visit! That couple of hours talking to Sammie in person has kept me going through all the bad bits. She’s so amazing and I’m incredibly proud of her. She also gave me light up penguins and a holographic penguin card that I’ll have to put up somewhere more permanently. I also got a Fluttershy soft toy, a colour changing egg light, a massive Candy Chaos box (that was from Johan- he knows how to make me happy)  and so many really awesome cards and good wishes. It was really an amazing day and I feel so lucky to have so many people care about me.

Another thing I got really excited about was the Post Pals party. I never thought I could get so excited about a party I wasn’t going to 😛 Post Pals is one of my favourite charities and it was awesome seeing all the planning and then the photos and videos of the Pals enjoying themselves. I’m not able to send letters or gifts very often (writing letters/emails and choosing gifts are often too much for me) but I am able to bug other people to do so.

Saw the district nurses. Told them my pads are leaking, but as I’m already on the highest absorbency they can prescribe they’re not sure what to do. The same day they came out I got a new delivery and it turns out the company has changed them to be even worse. I’m now buying my own more absorbent ones to use while Johan’s at his day service and at night in an attempt to not need to change the bedding every day.

Was meant to see the community mental health team about coping with meltdowns since I can’t use my normal coping mechanisms (movement/loud music) but they couldn’t find a psychologist to come out so they didn’t come. I’m not sure what’s going on there now.

Saw CFS team. Told them have been up and down and other stuff, including that I still don’t have the right hoist slings or a shower seat yet. They’re going to try and chase things again and I’m to keep doing what I’m doing until I start improving.

Have been watching loads of penguins. The chicks are getting so big now! There’s even been a couple of rockhopper intruders recently (kings are visible lots but I’ve only seen rockhoppers a couple of times).

I’ve started loom knitting. It’s like loom bands but with yarn 🙂 I’ve made a hat so far and I’m working on a matching scarf. The acrylic that came in the set I bought is quite scratchy, but I’ve read it’ll get softer in the wash so I’m hopeful that’s the case. I’m very slow at it and I have to take lots of breaks, but I’m so glad to have found a craft my hands don’t complain too much about.

I’ve also started on Duolingo. Concentrating mostly on French, but also learning German and Swedish for fun. Some of the phrases it gets me to say are interesting: two that are memorable are “Nous avons vingt enfants!” – We have 20 children in French, and “Ich bin eine banane” – I am a banana in German. Since “I am a banana” is one of the phrases I repeat when my brain is being silly and I’m trying to say something else. It’s almost as if it knew 🙂 I’m doing okay at the reading and speaking, but my spelling (especially in German) and listening is terrible. The app can be a bit fussy on the speaking as well- I’ll say something three times the exact same way, but it’ll only accept it the last time. It’s fun and hopefully I’ll get back to being able to read in French and maybe know enough German and Swedish to be able to identify it.

There’s 11 days until Johan goes to Edinburgh, the day before going to Sweden. We don’t have a care home sorted yet as apparently my respite provision ran out in June and they didn’t tell us until after the date, despite us giving them plenty of notice. Johan is getting help from the day service so hopefully we’ll get it sorted soon. He’s definitely going though, so they need to sort something out as I can’t manage alone.

The care agency keeps sending a carer we’ve asked them not to send multiple times now. She hurts me when touching me and needs so much guidance for making food that the only thing I can have done is my teeth brushed, which is a waste of an hour call. One of my main carers has told the agency not to send her multiple times, and I had one of the supervisors come out and she also told them I didn’t want to have her, but she is still coming. It’s in my care plan that the carers will make phone calls on my behalf as I can’t do it. I also still don’t have a rota or my evening calls at the right time. I think we’re going to have to put in an official complaint as my wishes are being completely ignored and they’re making me more ill. Not sure how I’m going to do it but it’s not the first time they’ve done this.

Next week will be mostly sorting everything that needs to be sorted for Johan going to Sweden, and me resting lots so I’m able to get to whatever care home it ends up being. There’s also a church service I want to go to next week but that very much depends on my health. I managed to go vote in the EU referendum, but other than that I’ve not been out since May. (The leave result really scares me, as the EU has given us at least a small amount of protection against the Tory government. I think it’s only going to get worse from here but there’s nothing I can do about it so I’m trying not to worry.) Hopefully my body will calm down and I’ll be able to get out of bed and do more soon 🙂

 Posted by at 10:23 pm

Life Is Better With Penguins

 Autism, Danni, M.E., Penguins!, Physical Disability, Real Life  Comments Off on Life Is Better With Penguins
Jun 032016
 

The following blog post may not make any sense.

For some reason the Edinburgh Zoo Penguin Cam doesn’t work directly with Chromecast, which meant I had to ask Johan to stream the tab when I wanted to watch and wasn’t well enough to go on my computer. I got a bit fed up with that, and decided that I wanted an Android TV stick so I could watch when I wanted. After some investigation, the Amazon Fire TV Stick seemed the best (especially as it was £5 cheaper than normal) so I bought that. I’ve added some of my own apps and it not only works for penguins, but I prefer the Twitch app as well (displays the chat on the telly) and I can sideload basically any Android app I want on there. I’m glad I bought it.

I’m just coming out of a bad patch. I was confused by it at the beginning, as I’d been doing okay and then I couldn’t get into the living room and couldn’t even have hugs as I was too ill. I was also experiencing more abdominal pain than is normal even for me. The explanation arrived on Tuesday- my period had arrived. I’m not sure how long it had been since my last one, but I didn’t cope with it very well. Luckily I seem to be nearly done with it, so I’m hoping to go back to how I was at the beginning of May again.

I’m slowly replacing some of the stuff I use daily and is becoming raggedy because of this. This week it’s been my penguin pet cushion (used to support my arm in bed and my head in my wheelchair). I’d forgotten how big and fluffy they are when new. I’ll be keeping the old one as a spare, as they’re the exact right size and shape for me (and folding them works great for supporting my head) but it’s nice to have a new clean one. The other advantage of having two is I can have one in the wash while using the other one.

Poseidon also demanded a new body as his feathers were scraggly. The super soft fluffy fleece most of my penguins and cushions are made of is great, but when they spend all their time in bed with me they’re less soft and fluffy after a while. Since I was ordering the Fire TV on Prime Now and they sold the exact baby emperor penguin body that Po has, he got lucky and I was able to get him one (penguin magic was involved). He’s now big and fluffy and is very happy.

I managed to fix my tablet! I don’t know why the camera wasn’t working in Marshmallow, but I did a factory reset and reinstalled everything and now it all works. I’m so happy as it means I can now use video chat again and take selfies when I want to.

I’m a bit scared now there’s just over 2 weeks until my 30th birthday. I’ve got no idea what I want to do for it, though if I’m well enough to go out that would be amazing. Johan keeps asking what I want for a present and I don’t know that either. My life is very different to what I thought it would be, but I’m hopeful my 30s will be better than my 20s. I hope I’ll stop being mistaken for a teenager then as well 🙂

I’ve been reading the Young Wizards series by Diane Duane recently. I’m currently partway through A Wizard of Mars. I’ve got the New Millennium editions on ebook, which I’m glad about as in A Wizard Alone there’s an autistic character that was portrayed really badly in the original book, but in the new edition it’s actually really good and he chooses to remain autistic when given the option of changing himself. I’d read a couple of books in the series years ago in the library, but it’s really good to be able to read them all in order. Dairine is probably my favourite character, and displays many autistic traits herself (though these aren’t identified as such in the series). The world has been a great one to escape into and I’m trying not to go too quickly as I think I’m going to be annoyed when I run out of books.

Feeling really bleh and drained now, so I think more rest is needed. Until I’m doing better, I think it’s time for more penguins. Penguins make everything better.

 Posted by at 5:10 am
May 112016
 

I’m currently watching the Edinburgh Zoo Penguin Cam and there’s a baby Gentoo chick that’s been born. It’s so adorable, though we don’t get to see it much as the parents keep it hidden under their bellies. I also watched Penguin A+E last night and that was amazing. I love that they were taking such good care of the African penguins and they made the one that was starving big and fat again 😀

I think I’m not doing too bad at the moment. I’ve been in my chair more, going to Nando’s one night and last Thursday going out to vote then to the local shop. I’m going into the living room more frequently, and it’s almost tidy enough so I’ll be able to lie on the mattress in there (the daybed still needs to be built). I love being in the same room as Johan, so we can talk while doing our own things (him on his computer, me on my tablet). I think the weather calming down (and being nicer) has helped, as when it changes all my symptoms get worse, so when it was being really erratic I was in a lot of pain and very grumpy. I hope the nice weather stays for a bit, as I’m enjoying not being too bad for me.

Sleep has been all over the place. Sometimes getting very little, sometimes like yesterday sleeping for nearly 16 hours. This means I’m not able to plan anything, as I don’t know if I’ll be awake. That nearly 16 hour period of sleeping I did manage about 11 hours of actual sleep, which is a big improvement over the 5-6 hours I normally manage most times. I think I needed it.

My nausea levels have been a bit more bearable, which means I’ve been taking less cyclizine. I hate taking cyclizine as it makes me dopey and out of it, but I hate vomiting more, so as my nausea had been so bad the last few months I was taking it regularly. A downside we’ve found to not taking it is my appetite is back down to very little, so I’m not feeling hungry as much and when I do it doesn’t take long until I’m full. I definitely think it’s the reason I’m no longer underweight (one of the side effects for me is increased appetite, beyond that of just being less nauseous) so we’ll have to keep an eye on things. I’m not taking it unless I need it for nausea as I like knowing what’s going on and the brain fog is bad enough without it, but if it becomes an issue I’ll speak to my GP about it.

I’ve been working on my loom band stuff again recently, though many of them haven’t worked (I was making a bag and it fell apart as I was trying to repair a mistake). I have managed a purple penguin headband though, which I’m happy with. I’m hoping to look into loom knitting when I get some yarn as it’s very similar, but when looking for yarn I got completely overwhelmed so haven’t managed to get any yet. All I know is that chunky yarn is best for loom knitting a scarf, which is the first thing I want to try and make. I have got the attachments needed to make some loom band lanyards, so I’ll be trying that next I think. First though I need to sort out one of my boxes, as Johan managed to knock it over and mix all the bands up. The good thing is I really enjoy sorting so it’s been quite nice working on getting them organised. Still got some way to go, but I think they may be more sorted than they were originally once I’m done (one of the sections was glitter jelly bands and another neon bands, all in different colours, so I’ll be separating the colours out). I’m also partially through making a wallet, which will be awesome if I manage to finish it without it breaking before I’m done.

Last night I also watched the Eurovision Song Contest first semi final. I missed the first song as that’s when I was waking up, but Johan said I didn’t miss much. I liked all the sparklies, shinies and purple suits (so many awesome purple suits!) and Russia’s special effects in particular were amazing. I can’t remember what songs I liked, but I think at least one of them got through to the final (I really should have made notes). If I’m awake I’m wanting to watch the next semi final and then the final on Saturday, but just in case I’ve set them to record as I do like everything about it. I’ve been following someone on Twitter (@Scattermoon) who has been tweeting their journey to Stockholm to see Eurovision and it was amazing- I could imagine I was travelling with them. One day I’d love to travel across Europe by coach and train like they did 😀

It is ME awareness month/week/day this month (I think we’re currently in the week, and the day is tomorrow? I’m not sure). I’m not sure I’m up to posting anything in particular for it, but if I see anything particularly good then I’ll try and share it. ME is a horrible illness and some doctor’s still don’t believe it exists, or think it’s a form of somatoform disorder, when there’s now plenty of evidence that’s it’s a physical disease. There’s definitely a psychological component, especially since adrenaline can make symptoms worse, but that’s the case with most chronic illnesses. I’m lucky that mine seems to have stabilised now, but some people continue to get worse and can’t do the things I can.

The care agency seems to be improving a bit. The care worker who yelled at me and the manager(?) who came into my bedroom without permission or even telling me both no longer work for the agency. I’ve been told that only one manager (who knows me as she’s done my care calls before) is allowed to come to our flat for agency stuff, and she knows to phone Johan before coming. We also have an agreement I’m not going to have spot checks and that the key safe is only to be used for actual care calls. I have two main care workers now who do all my weekday calls and my Saturday morning call, but the other three (Saturday evening, Sunday morning and Sunday evening) are still random and I still don’t have  rota to tell me who it’s going to be. Last Saturday evening one of my normal care workers did the evening call, and though she had to come early for it that was okay as I knew in advance and I preferred that to having someone I don’t know very well. The care worker on Sunday morning is a mystery, as I was asleep and they didn’t write in the book (and also arrived at 9.15am for a 10am call) but the evening care worker was someone I’d had once before who I get on with well and just seems to get things without needing everything explaining in detail. It was also the first evening call in months that was actually at the right time (5.30pm instead of 5pm). That makes such a difference as it means I use a lot less energy trying to explain things and dealing with everything. I think things with the care agency calming down is partially why I’m able to get into my chair and go out more. All I need now is a rota, the evening calls to happen at the right time and for them to contact us about changes and I might be able to stop worrying about it.

I managed to play a bit of the Overwatch beta last week, playing as Mercy (a healer). I’m not very good, but it’s the first FPS I’ve actually enjoyed playing, which is awesome. If I continue to get on the computer regularly then I think I’ll be playing it quite a bit. Johan didn’t enjoy it quite as much, so probably won’t be buying it (I’ve already preordered it as I knew from the initial announcement I’d probably like it, and watching people play it confirmed that for me) but that’s okay as I’m sure I’ll be able to find people to play with. At the moment I’m only playing against the AI but at some point I’ll be brave enough to play against real people.

This morning I played a bit of World of Warcraft, working on the legendary ring for Danni. I’d got to the part where you need to get documents and eavesdrop on the Horde with Garona, which is known as probably the hardest part of the whole quest chain. I’d already tried (and failed) to complete it for over an hour previously, but this morning I managed it in about 20 minutes, though I ended up cheating and using my flying mount to bypass everyone. After I’d managed that I did all of Hellfire Citadel in LFR, getting 9 tomes this week. Since I need 33, that’s not too bad and if I can get on the computer every week, I should be able to complete the ring before Legion comes out in August. I’m looking forward to the film coming out, and I want to go and see it in the cinema but that might be a little bit optimistic (though I’d take earplugs and things to make it less overwhelming). If I can’t I guess I’ll have to wait until it’s available to download and then I’ll watch it. I’ve got the prequel book to read so I’m hoping to finish that before the film comes out.

I’m happy I’m able to do more. I’m not massively improved physically, but those small amounts of improvements where I’m less nauseous, more able to be semi-upright and able to tolerate a bit more light and sound make a massive difference in how much I’m able to do. I still have to be careful, as last week I made myself really ill by wiping my own leg with a baby wipe (I was doing okay, then I wiped myself and ended up really nauseous, dizzy and shaking). I’m not sure why such a small thing triggered such a large reaction as I normally get a bit more warning than that, but it was a reminder that I do need to be careful if I want to keep doing the stuff I enjoy. Hopefully I’ll keep managing a little bit more as time goes on so I’ll be able to do some of the bigger things, like go to the cinema or travelling to Leeds. Until then, I’ll follow other people’s journeys and imagine taking them myself 🙂

 Posted by at 1:25 pm
Apr 232016
 

The problem with sleeping a lot and randomly is that time somehow disappears so one day it’s February and then suddenly it’s the middle of April.

I’ve been very up and down the last few weeks. Still got issues with the care agency. ESA form is in so I’m waiting to hear if I’m still in the support group, and if so for how long. Some time spent on my computer but nowhere near as much as I’d like, and not at all for about two weeks until this week. I’ve not been in my chair much either, though did go into the living room for a bit and outside for 5 minutes to try and spot the International Space Station (and failed due to clouds) at the beginning of the month. I’m hoping to be able to go properly out again soon. Esther has moved out, as our flat was just too small for the three of us, especially with my health being affected by everything (she was a great flatmate, and her new place is better for work so I’m hoping it goes well for her).

Easter was good. Eggs and bunnies were bought and eaten. I managed to watch the church service on the telly which was awesome as I miss going to church. I’ve looked into inclusive church services that happen at a time that I can actually get to them (there’s no chance of me getting anywhere for 10am, especially on a Sunday) and I’ve found one that looks really promising, so when I have the spoons I’m hoping to email them about the stuff I need to know (how accessible is it, whether there’s a set routine or service I can learn and follow, how noisy it gets). Emails are hard even when I know what I want to say.

April is also autism awareness/acceptance month. I’ve done pretty much nothing for it, other than speak to my GP for help with my anxiety and ways of coping before I end up in meltdown (unfortunately happening all too regularly due to care agency stuff, like being yelled at by a care worker, or someone I don’t know letting themselves into our flat and into my bedroom with no notice, name or ID- the first I knew of it was when I rolled over and she was there, as I had earplugs in). I think this was the first time I’d told a doctor about my meltdowns, as when they happened once a year it wasn’t that important for them to know. It’s also in my care plan now, along with what to do (leave me alone and if Johan is in, get him- it might be scary seeing me hit or bite myself but I’m not likely to hurt myself too badly and the worst thing you can do is talk to me or try and touch me). Unfortunately most of my coping/prevention methods involve things I can’t do due to being so ill with ME, so I’m not sure what to do, especially when our ways of trying to prevent them (like telling the care agency not to use the key safe except for care calls, and to contact us in advance before turning up) are being ignored.

My GP was awesome as always. She seemed to understand that a meltdown is different from a panic attack (though I still get plenty of them, normally at night when the neighbours are arguing). She’s not got many ideas yet, but she’s going to see if there’s someone who understands autism who may be able to help me come up with some coping strategies. I don’t get why I’m so nervous about seeing her when she’s always so nice and tries to help, even though I’m not the easiest person in the world to deal with (yay neurological illness with no currently known effective treatment and communication difficulties due to autism!). She even sorted out an antihistamine prescription for Johan even though it was my appointment.

I’m still getting used to the side effects of cetirizine I’m taking for hay fever (even though there are no leaves on my tree yet there’s definitely pollen around). Mostly extra drowsiness and dopiness, though it might also be why I’m getting worse headaches than normal. Luckily it’s nothing that I can’t cope with and it’s worth it so my eyes aren’t as sore and itchy.

I got selected from the waitlist to buy Here Active Listening ear buds. They work well for what I want them for (turn down certain noises while still being able to hear what I want, such as turning down background noise while still being able to hear speech) but only when I can actually get them working with my tablet. Unfortunately the left one doesn’t seem to like turning on every time and I’ve had difficulties getting it to connect to my bluetooth, but I’m hoping that it’s just teething issues and they’ll work better soon.

I’ve also recently updated my tablet to Android Marshmallow from Lollipop. While doing so I took the time to encrypt it, so it’s now more secure (though I’ve also turned on smart lock so when I’m at home with it then it’ll automatically stay unlocked, as typing in the password every time would be too much for me). The only bug I’ve found is that the IR Blaster doesn’t seem to be working, which means I can no longer control my telly from my tablet. When I’m not able to press the buttons on the remote myself I’m needing Johan to do it for me. Hopefully that’ll be fixed soon, or I’ll have to look into a touchscreen remote control.

I’m getting excited for Overwatch coming out next month. I’m hoping I’ll be able to get on my computer to play it, as I preordered it. I’m probably going to be terrible but it looks fun anyhow. Today I managed to get my Diablo Wizard to level 70, which only took a couple of years. Hopefully I won’t take as long with my next character 😛

I’ve been enjoying watching the Penguin Cam at Edinburgh Zoo, which shows the gentoo penguins and their stone nests. Watching the penguins mate has been interesting, especially as they keep being interrupted by other penguins wanting to steal their stones while they’re doing so. There are quite a few eggs now and hopefully in the next month or so there will be some chicks. Until then there’s lots of stone stealing from nests, and occasionally the king penguins invade, especially at feeding time.

 Posted by at 12:54 pm
Feb 282016
 

Good news everyone! I think I’m over the relapse! On Wednesday I went out (into Gateshead for Burger King and shopping in Tesco because it was evening and there wasn’t much else open) and it was fun. I’ve also been able to go on my computer a bit more, which is making me very happy (not least because Smartflix is awesome and has tons of shows that I can’t stream on Netflix using my Chromecast without lots of config I’m not well enough to sort). I’m not that much better than I was, but the small amount I am is the difference between lying in a darkened room and being able to go on my computer and go out. Tiny things like being able to tolerate a bit more light, noise, movement and touch, and not needing to be completely flat. I’m so happy to be able to do stuff, as that relapse lasted a bit longer than mine usually do so I was scared it was becoming my new normal. The only issue now is I seem to be mostly nocturnal, which makes communicating with people and doing things hard 😛

One thing I have been doing is playing games. The rest of this post will be about them so it’s likely to be of no interest to anyone but me 🙂 I’ve introduced Sammie to World of Warcraft (I’m sure it won’t be long until she’s better than I am) and recruit a friend makes levelling fast. I’ve not played as much with her as I’d have liked but hopefully we’ll get more time now I’m doing better. When I’ve been on when Sammie’s not I’ve been doing a bit of work on the legendary ring quest chain. I got my third elemental tablet thing so my ring is now item level 715. The next step is to get Blackhand’s arm which is kinda disgusting but at least it’s not going through poop. I’m hoping to work on getting Pepe soon and pet battles.

On my tablet I’ve been trying new games, and playing old ones. In DragonVale I currently have 248 of 269 total dragons, and of those currently available I need about 6. There’s a few more than I can get with help through the co-op breeding cave but the earliest I can complete the collection is during Bring it Back in December. I’m happy with the progress I’ve made though 🙂

I’ve been playing a lot of Neko Atsume and recently got every single memento in the game. I already had every goodie so now I’m slowly working towards getting every theme and hoping they release new content. The cats are so adorable though so I’m really happy to play it.

In High School Story I’ve managed to complete all the current story lines, which I wasn’t expecting to do yet. I’ve got 15 classmate rares still to get (I’ve got the common gender of each type already), but I’m in no rush. I’m current working on getting a female hacker. I was frustrated that some of the goals seemed nearly impossible but they have been a bit easier recently so I’m happy there.

Hollywood U has been a bit more frustrating on the goal front, not least because they often don’t show up when they’re meant to so I end up getting less time (I missed nearly a day for this week’s). I’ve completed all the quests so I’m just working on the goals and getting both Critics, as they’re the new type and I’ve not managed to get either yet. It’s only been a few days though.

I’m still playing Kim Kardashian Hollywood, though I’ve come close to quitting a few times. The issues I was having seem to have been fixed, and though it’s still buggy it’s playable now. I’m level 39, number 1 on the A+++ list, and have mostly completed the quests, other than the most recently released ones. I try not to worry about the weekend events, so unless there’s something I really want as a prize I just do them as and when. During the week I also work on levelling the VIPs through Hangouts and jobs, though I’ve only ever got the special reward once. At least it doesn’t require much concentration.

A new game I’ve been playing recently after being invited by a friend is Happy Street. I’m still not entirely sure what I’m doing, but it’s cute (if a bit obsessed with poop) and I seem to always have something to do so I’m keeping it for now.

I’m also trying Britney Spear’s American Idol at the moment. It’s not officially available outside of New Zealand, which explains why none of my friends are playing it. The game is pretty fun but very laggy so there needs to be some work before it’s released more generally. It’s a pop version of the Kim Kardashian Hollywood game, but more purple. My character is called Adélie Gentoo and all my songs are about penguins 🙂

One game I tried and then gave up on with Kendall and Kylie. That game is so slow I can read a chapter of a book in the time it takes to load (anything from 3 1/2 to 7 minutes). For a mobile game it’s terrible. Not only that, but since update 1.1.0 the game doesn’t seem to save correctly, so any progress is lost. More recent updates don’t seem to have fixed it. Luckily I’d already reached level 8 for the crossover stuff in Kim Kardashian Hollywood, but until they do some major work I won’t be playing any more of it. It’s a shame as I quite enjoyed the storyline.

Other games I’ve got installed on my tablet right now are AdVenture Capitalist, 80 Days, The Room 3 and a couple of different Sudoku games. I’m currently waiting for AdVenture Capitalist to be completable sometime this millennia (no joke), 80 Days I got annoyed with as I missed a couple of connections due to brain fog so I’m taking a short break before trying it again, and the Room 3 I’m playing in bits as it requires quite a bit of cognitive energy. The sudoku games are fun for me and a way of judging how I’m doing mentally- the logic required is normally very easy for me, so if I’m struggling to complete an expert puzzle or easy killer sudoku I know I’m not doing great. If I can’t solve one of the easier ones then I know I need to rest.

The last game I have is Hearthstone. For a while it was unplayable on my tablet, but I reset it while installing a newer version of my rom and it’s running better now. I’m mostly playing the Tavern Brawls when I get the chance, as I don’t know the current meta game well enough to work on ranked. Hopefully now I’m getting on my computer a bit more I’ll be able to play some Heroes of the Storm and other games, but with having to do adult stuff like paying bills, sorting money and food shopping when I’m on here as well I’ll have to wait and see if I can manage it more frequently.

 Posted by at 8:28 am