Jan 272016
 

A quick blog post as I want to blog at least monthly, but this month I’ve not been well even for me. January relapses are normal but this one is lasting longer than I’m used to.

I have a cold. I’ve had it now for several weeks, might now be months. I’m sleeping a lot, though my FitBit is telling me that I’m getting a lot less sleep than I realised (will sleep for a 13 hour period but only actually get 8 hours of sleep in that time, as I’m waking up so much due to pain/not being able to breathe/nightmares). I’m very lucky if I manage mood than an hour of uninterrupted sleep a day. I don’t even remember what a sleeping pattern is.

I’ve managed to go on my computer twice, which is less than normal for me. There are some things I can only do on my computer so I’m frustrated but pushing myself results in being worse. I spent 15 minutes in my chair at the beginning of the month to have my sheet changed but haven’t been well enough to go back in it. That small amount of extra dizziness, pain and exhaustion makes such a difference in what I can do. Anxiety because the care agency still isn’t doing what I need them to doesn’t help.

Good news is Johan almost has a passport. He went for the interview on his birthday and it went well so he’s just waiting for it to arrive. It’s awesome seeing him so excited. He’s planning on going to Sweden in the summer to play games very fast and see friends who also like playing games very fast. When my body has been behaving enough I’ve been eating the goodies we were given for Christmas. Gingerbread penguins and posh fudge are very nice, and not too bad when they reappear multiple times πŸ˜› I’ve also had McDonalds which I caused me less pain than most other foods, because my body is weird (only the lettuce caused issues).

I’ve got so many plans for when I next go on puter and go out. Taking my Deed Poll to the bank to get my name changed, and sending it to the people we’ve not managed to contact yet. Playing World of Warcraft. Talking to Sammie (I miss her the most when too ill to talk). Going for a meal with Johan for his birthday (he went out by himself but it’s not the same). Hopefully writing letters/emails, though they take more cognitive energy than I’ve had for a while. Having proper cuddles. I’m hoping this cold will be over soon, or at least I’ll have another slightly better day so I can manage something. I’m sure it’ll happen πŸ™‚

I’ve been so grateful for my friends the last few weeks. Sending me penguins (especially for Penguin Awareness Day). Giving me (online) Squishes. Being understanding when I disappear from Twitter and Facebook for a bit. My cousin Elka linked me a penguin shirt that had a picture of a penguin made up of lots of little penguins, and I bought that and it arrived yesterday. I can’t wait to be well enough to get changed into it. It’s purple and long sleeved and awesome.

This ended up longer than I expected. Brain dumps are definitely the easiest form of communication. Time to go back to sleep and hopefully stay asleep this time. I can hope πŸ™‚

 Posted by at 8:44 am
Jan 012016
 

Happy New Year!

Belated Merry Christmas and Happy Newtonmas πŸ™‚ I had a good Christmas, followed by a short crash but luckily we got things sorted quickly enough it only lasted a few days and I’m back to nearly Danni-normal again πŸ™‚

This month has been up and down a bit, saw the community dentist the second time I tried (first time couldn’t get on the bus because the driver wouldn’t let me on because of prams) and have been referred for my teeth to be sorted out under a general anaesthetic as no other option for me. I went to Enchanted Parks as well and that was awesome. So many pretty lights and displays! Mostly been in bed otherwise but did get up when Sammie came to pick up her presents and talk πŸ™‚ I knew then that no matter what happened it was going to be an awesome Christmas.

On Christmas Day itself I watched a church service on the telly, opened many presents (thank you everyone who sent me cards and presents), had roast hog for dinner, along with Johan’s homemade roast potatoes which were the nicest potatoes I’ve ever had even though it was his first time, and watched the Doctor Who Christmas special which was awesome. A great day. I also spoke to Sammie on both Christmas Day and her 12th birthday which was the best. Totally worth the payback afterwards πŸ˜€

Anyway, every year I fill out a silly survey about the year that just happened. I’ve just watched the new year come in and I’m gonna do it now while I remember πŸ™‚

1. What did you do in 2015 that you’d never done before?
Get a hoist! Meant I could get into my wheelchair and go into Gateshead and Newcastle for the first time in a few years. Also started making things with loom bands.

2. Did you keep your New Year’s Resolutions, and will you make more for next year?
I managed 2 of 4, and most of my goals (including the 50 books read this year). I’ll make more in the next few days. I’m happy with how I did overall, as a couple were ambitious (and relied on other things happening that didn’t).

3. Did anyone close to you give birth?
Yes! More babies this year so a Facebook feed full of cuteness!

4. Did anyone close to you die?
Yes πŸ™ My good friend Ron died a few months ago, and my grandma died earlier this month. I was too ill to go to their funerals πŸ™

5. What countries did you visit?
I stayed in the UK, but did go into Gateshead and Newcastle for non-medical reasons! That was awesome!

6. What would you like to have in 2016 that you lacked in 2015?
I need that shower chair still πŸ˜›

7. What dates from 2015 will remain etched upon your memory, and why?
My memory is terrible for dates, so I’ll remember events (Sammie visiting, Ron and my Grandma dying, going out) but not exactly when they happened.

8. What was your biggest achievement of the year?
Going into Newcastle, being in my chair for several hours with the only payback being needing to sleep more. More of that please πŸ™‚

9. What was your biggest failure?
My health and my memory.

10. Did you suffer illness or injury?
Mostly just ME stuff. Got a rough diagnosis of POTS (too ill for a tilt table test) but I’ve had the symptoms of that since I was 12. Nothing new so that’s good I guess πŸ™‚

11. What was the best thing someone bought you?
Like I said last year, I appreciate everything that people bought for me. So many penguins and ponies πŸ˜€ One of my Christmas presents from Sammie is a heart shaped cushion with her on it. I think she’s abseiling but I might be wrong there πŸ˜›

12. Whose behaviour merited celebration?
Same answers as last year: Johan and Sammie πŸ˜› I think Esther has also done really well this year as well.

13. Whose behaviour made you appalled and/or depressed?
Still the government. Things are getting harder and harder for my friends because of them, and I don’t know how to help πŸ™

14. Where did most of your money go?
Same as last year: food, bills, disability stuff. I did buy a new cooker which was much needed.

15. What did you get really, really, really excited about?
This answer will be obvious to anyone who knows me: Sammie and penguins πŸ˜€ I can add going out to that list this year πŸ˜€

16. What songs will always remind of 2015?
Although I’ve listened to some music this year, I’ve not really listened to anything recent so I don’t think I’ve got a song that would remind me of this year πŸ˜›

17. Compared to this time last year, are you:
a) happier or sadder?
Mostly happier πŸ™‚ Had a few sad periods but I think overall being able to go out has boosted my mood loads, as has being in pretty regular contact with Sammie.
b) fatter or skinnier?
Fatter πŸ˜› As I was underweight, this is a good thing. I’m still not where I need to be but eating has been a bit easier this year. Still malnourished but continuing to work on that.
c) richer or poorer?
About the same.

18. What do you wish you’d done more of?
Going out πŸ˜› Glad I managed it though.

19. What do you wish you’d done less of?
Relapsing, though I did so less than 2014. Being anxious.

20. How do you plan to spend Christmas?
Christmas was spent talking to Sammie, watching telly and eating the amazing roast dinner Johan made me πŸ™‚ Next year, I hope to have the entire tree decorated (this year only managed lights and star, last year it was missing the lights).

21. Did you fall in love in 2015?
The babies! So cute! Especially Amy who came to see me πŸ™‚

22. How many one night stands?
None. Didn’t even try standing this year πŸ˜›

23. What was your favourite TV programme?
Doctor Who, Great British Bake Off and Steven Universe πŸ™‚

24. Do you hate anyone now that you didn’t hate this time last year?
Nope. Still don’t actually hate anyone. I dislike the government, but that’s different.

25. What was the best book you read?
What If? by Randall Munroe. Thank you Sammie for prodding me to actually read it πŸ™‚

26. What was your greatest musical discovery?
Google Play Music. They are pretty good at guessing what I want to listen to (though they do get it really wrong sometimes).

27. What did you want and get?
A hoist! Freedom at last! Also spoke to Sammie loads and got to see her. Some support for Johan.

28. What did you want and not get?
A shower chair. Apart from two baths in the care home, I’ve not been clean all year.

29. What was your favourite film of this year?
I’m torn between Big Hero 6 and Inside Out.

30. What did you do on your birthday?
Sleep mostly πŸ™‚ I think I spoke to Sammie as well. Opened lots of amazing presents (including a penguin balloon to walk!).

31. What one thing would have made your year immeasurably more satisfying?
Being able to get properly clean at home.

32. How would you describe your personal fashion concept in 2015?
Tops, leggings and pyjamas. Penguins were also involved πŸ™‚

33. What kept you sane?
This never really changes πŸ™‚ Sammie, Johan, penguins, and friends.

34. Which celebrity/public figure did you fancy the most?
I can’t think of any.

35. What political issue stirred you the most?
The welfare cuts again. Sanctions in particular are getting really bad.

36. Who do you miss?
I really miss talking to Ron. It’s not been the same being on Twitter since. He would have been so proud of Johan’s potatoes. I also miss seeing my friends and family, but talking online helps.

37. Who was the best new person you met?
Probably Marga and Amy. Amy is adorabubble!

38. What was the best thing you ate?
Johan’s roast potatoes. No contest.

39. Tell us a valuable life lesson you learned in 2015?
It will take several explanations before people will accept sitting upright is a bad idea. Especially nurses and care assistants.

40. Quote a song lyric that sums up your year:
Here’s a penguin, there’s a penguin and another little penguin. Fuzzy penguin, funny penguin, penguin, penguin duck. (Not actually a song, but I’ve sung it. The duck mentioned belongs to Amy.)

 Posted by at 1:01 am
Nov 272015
 

Today I took advantage of some of the sales to do most of the Christmas and birthday present shopping for Sammie. Have just one main item left to get and as it’s tech am waiting for Monday (though I’ll keep an eye out before then). Being able to do shopping from bed made it so much easier- I wouldn’t want to be shopping outside today. Tomorrow the bulk of them get delivered and hopefully we’ll be able to get them wrapped in the next couple of weeks. Need to buy wrapping paper first though πŸ™‚

When Sammie got home from school we spent time talking, playing a game of Hearthstone and watching YouTube videos. It was nice πŸ˜€ Talking to her cheers me up loads, even when I’m already happy πŸ˜€ Johan joined us and it was funny seeing how they interact as they have a similar sense of humour. Talking to two of my favourite people in the world at the same time is awesome so I had a brilliant day.

Didn’t manage going out as though I was well enough, the weather was absolutely appalling and it would have been pretty late. We’re rearranging it for a day when we don’t have a weather warning and we have more time.

After Sammie went I spent time watching more Hell’s Kitchen with Johan. Personally I wouldn’t trust any of the chefs to run a kitchen, but I know very little about cooking. Still, raw meat and poultry is not good. We’ve only got a few episodes left of this season so we’ll probably finish them tomorrow.

Penguins are awesome. Friends sent me pictures of penguins and that was amazing. I am so so lucky to have such great family and friends. I don’t know why but I’m so grateful. *Flaps*

 Posted by at 11:54 am
Nov 262015
 

Working on my anxiety about the carers. Luckily was two nice ones so was able to get stuff done. Had to ask Johan to come home at lunchtime which is annoying but luckily he was able to get out early and make me more comfortable.

Have been watching stuff on Netflix today. Finished watching The Hunger Games: Catching Fire which I’d started a few months ago but had to stop. I prefer the book but it was still a good film.

Was making a very long fishtail chain (ended up being 1000 bands and over 10 feet long) so put Hell’s Kitchen on as something in the background. It’s the US one and it is not a very good competition format but it’s hilarious as a reality entertainment show. Made Johan jealous as he wanted to watch it while he was raiding πŸ˜› He’s now watching it with me while I’m writing this. It’s funny though the amount of undercooked chicken, salmon and pork is scary πŸ˜›

Tomorrow I’m going to be doing most of my Christmas and birthday shopping. I have a plan and hopefully my body will let me keep to it. If not it’s not the end of the world and it can be done later. I also might be going out for a hot drink with my sisters in the evening if we’re all well enough. Physically I’m doing okay other than pain and my digestive system hating me which is a good sign.

Penguins are amazing and people are really nice to me and I don’t really understand why but it makes me happy and keeps me going when my brain is being nasty to me. Hopefully my brain will stop being mean to me.

 Posted by at 11:40 pm
Nov 252015
 

Watched Doctor Who with Esther. Too many feels. Argh that episode. *Sniff*

Anxiety is still bad but I managed to let the carers help me a bit today. I know what my brain is telling me is completely irrational but it’s hard to argue with your own brain. I went on my computer and managed to organise some tickets to see the Enchanted Park next month, even sending emails to sort out a carer ticket and why mine was broken. Also played some World of Warcraft where the guild boosted me through heroic Archimonde so I’ll be able to get a moose mount. Thank you Trivial πŸ™‚

Also tried the Tavern Brawl in Hearthstone with Sammie. She was winning then I got a great set of cards which changed it so I won. Hopefully we’ll get another game in before it finishes.

Got out of bed while evening carer was here so my bedding could be changed. It was nice πŸ™‚ Johan gave me hugs from behind. Stayed in my chair for about an hour.

Digestive system is now being very mean to me so I’m gonna curl up in a ball and ask for penguins to be heated. That seems like a good idea. If anyone knows how to make a brain stop telling me I’m evil, please let me know.

 Posted by at 11:57 pm

Adventures in Penguin Shopping

 Autism, Danni, M.E., NaBloPoMo, Penguins!, Physical Disability, Real Life  Comments Off on Adventures in Penguin Shopping
Nov 212015
 

Went out today! First went into Gateshead and got my head shaved at a barbershop (they initially said they couldn’t do me until Johan explained what I wanted). I now have basically no hair and it feels weird but it’ll be nice to not have to worry about washing it for a while.

I felt okay and we were a bit hungry so decided to go into Newcastle for food. We went to Wagamama as I’d never been there before and Johan likes it. I had dumplings which were very nice. Getting the Metro was difficult as it was as everyone was travelling to see the Newcastle football match, but we managed to get me on.

We went to Grainger Market next, where Johan failed to find any games in the retro gaming shop and I found a penguin cupcake in French Oven. I’m still full from lunch so will have to eat it later. Next was Geek Retreat which was very crowded. I think I’ll go back when there’s less people as it was hard to see what was there, but I had a nice hot chocolate.

Looked in Forbidden Planet and then Travelling Man. I couldn’t find anything I wanted in Forbidden Planet but bought Pandemic from Travelling Man as I’ve been interested in it for a while and we were wanting a game that works well with two players. Getting around these small shops is hard in my tank πŸ˜›

We were starting to think about home, but the Newcastle match had just finished and I knew the Metro would be packed. I also had misplaced my gloves and as the temperature was now below freezing asked to go to Primark to buy some more. On the way Johan looked in PC World for a keyboard (he couldn’t find the one be wanted) and I got confused by the pile of monitors in the middle of the aisle in a shop which is otherwise easy to get around (though the displays are too high for a wheelchair user).

In Primark I found some really big penguin thermal socks, and then two different pairs of penguin gloves. We looked at the warm slippers but couldn’t find any in my size. While doing so I managed to knock the penguin cushion under my legs so I couldn’t feel it, and thought I’d dropped it. We ended up backtracking and Johan asked the staff before he checked and found it. Near the counter I spied a multipack of normal penguin socks, so bought them as well. While helping me sort things out Johan found the gloves I’d already been wearing under the Trabasack but I’d bought penguin stuff so it was worth it. I was very tired by now so we went home.

It’s been a really good day. I probably overdid it but it’ll have been worth it. The most exhausting thing wasn’t being in my chair and it, but trying to communicate as I had no voice and typing was difficult while moving. I think if I go out when I can’t speak again I should take a Bluetooth keyboard as it’ll make typing much easier.

Tomorrow if I feel okay I want to go on my computer as I’ve not been on since fixing my tablet and I think it’s been over a week since I was on to do fun stuff. I also need to start finalising my Christmas shopping lists. Before then though I think I need to sleep πŸ˜›

 Posted by at 8:52 pm
Nov 202015
 

The original plan was to go until Newcastle to see Becca but she wasn’t able to make it so as I’m tired we’re going out tomorrow instead. Hopefully I’ll get more than the 1 1/2 hours of sleep I managed this morning.

I’ve mostly been playing the game Loop on my tablet today. It’s very addictive and good for when I don’t have much brain power as I find it easy to work out.

When everyone was out I put the music on the telly really loud* as I couldn’t disturb anyone. I was singing along and flapping and my heart rate went over 150bpm. Whoops. Guess that’s my exercise for the week and I hope I don’t get payback. I wouldn’t have known if it weren’t for the FitBit as I felt okay at the time. I also made a couple of loom band bracelets to try some new patterns. I’m managing intermediate level stuff now πŸ™‚

Hoping tomorrow I’ll be awake enough to out as I really want to get my hair shaved off. There’s a barbers in Gateshead that looks good so will see if they’re up to the challenge of managing it with me in my chair. I was thinking of Newcastle but maybe on a Saturday a few weeks before Christmas isn’t the best time. I’ll go into Newcastle on a weekday to see Fenwick’s window πŸ™‚ I’m tired enough now to sleep through to morning if my brain will let me. Nicky’s new body is so soft and fluffy that I love cuddling them.

*Really loud = volume 20 instead of volume 15.

 Posted by at 5:39 pm

Amazon Prime Now

 Danni, M.E., NaBloPoMo, Penguins!, Physical Disability, Real Life  Comments Off on Amazon Prime Now
Nov 192015
 

Slept during the day so have done nothing really productive, waking up about quarter past eleven this evening. Tomorrow I’m going out so I really need to fix this.

This morning I wanted toast for breakfast for breakfast, and we had no bread. As Johan was going out he couldn’t go to the shop, so I used the new Amazon Prime Now delivery service to buy some (along with milk, chocolate, biscuits, tracksuit bottoms and a FitBit Charge HR). I placed the order at 9.14am and it arrived at 9.37am. That is the ultimate in impulse shopping πŸ˜› I’m unlikely to use the within the hour delivery unless it’s a real emergency as it’s Β£6.99, but if they have what I want then I might use the 2 hour same day delivery as that doesn’t cost any extra as I’m already on Prime.

The FitBit is interesting. For some reason it was cheaper on Prime Now than on Amazon’s normal site (Β£69.99 compared to Β£124 for the one I wanted). I’ve not figured out how to get it to show my heart rate on my tablet in real time yet, as that’s what I mostly want it for, but it has been interesting seeing how simple tasks like rolling over and eating raise my heart rate. It did think I was asleep when I was just resting this morning but luckily it was easy to correct. When I did fall asleep it seemed to be pretty accurate, also realising when I woke up for Johan coming in. I’m going to class any time sat up as exercise to try and find out how it affects my heart rate.

It was a nice carer this morning. She came on time and is fed up of the agency missing calls and stuff. She got me an email address so I should be able to email them about things now. I’ll probably set up a template for asking where the carer is so if they don’t turn up I can just send an email without worrying about how to write it. The carer made me some nommy toast, got me dressed in comfy clothes (including my new tracksuit bottoms, which are too short but otherwise fit) and is going to ask the agency to put me on her rota for every morning except her day off. This would be great for us as we really like her and she’s one of only two carers I feel safe dealing with by myself.

The evening carer turned up but I had sleep paralysis so wasn’t able to tell her I was awake. I was very tired anyway as I’d not been back to sleep for that long. I don’t think Johan spoke to her.

I’m excited about going out tomorrow. The pain has eased off a little bit- not quite back to normal but more bearable. A lot of it was digestive issues because I ate too much fruit and veg. I need to remember they don’t agree with me and to only have small amounts, even though they’re so nice. I’m hoping to get some sleep before I go out, even if it’s just while Johan is at the day service thingie. If I can get some more sleep tonight though I’d be very happy. Hopefully with having had a decent carer it’ll be easier to sleep.

Nicky’s new body has arrived and I’ll be using penguin magic to transfer them into their new body. I think Patricia is missing Johan a bit πŸ™‚ I also got my noise cancelling headphones which are weird but do seem to work for blocking out noise. I’ll be testing them properly tomorrow when I go out. Squee!

 Posted by at 11:57 pm
Nov 182015
 

Anxiety is ebil. Not being able to sleep at night because scared someone will break in or have a violent fight or other silly things that aren’t likely but my brain insists will happen when I’m asleep. I stayed awake for the morning carer and no-one showed up. It was about 12pm before I managed to fall asleep.

Being asleep most of the day means I’ve done nothing productive. Pain levels have been higher than normal and I’m not sure why. I need to do a food shop but it requires more brain power than I have right now. Decided I’m not getting out of bed until Friday and we have a plan for if I’m still hurting so much then.

I’m getting a bit obsessed with Neko Atsume. My current strategy is to buy the most expensive items first. I’m starting to get lots of mementos which is awesome πŸ™‚

Johan is helping by sitting in my room, dosing me up on painkillers and heating penguins. We found a hole in Nicky’s wing so I’ve bought her a new body and Patricia (Johan’s penguin) is helping in the meantime. I’ve noticed it’s the newer penguins developing holes which is concerning. I hope the new one lasts longer. I also took the opportunity to buy noise cancelling headphones, a second Rainbow Loom and 2100 loom bands for 46p. The advantage of getting into it late πŸ™‚

I’m ho
I’m hoping tomorrow will be better. At least there are penguins πŸ™‚

 Posted by at 11:58 pm
Nov 122015
 

I got some new penguin feet slippers today. They are cool. Also was able to sit in my chair to see CFS team. They are happy I’m getting up and helped me with plan on getting up more. Also recommended wheelchair services as I’m at risk of pressure sores in my chair (not enough padding on my bum). I wore my new penguin shirt and it fits nicely.

No carer this morning. Was annoying as I wanted stuff doing. I only got 3 1/2 hours sleep before waking up this morning at 10am so am tired now. Johan and Esther are going into Durham to see light thingies so Johan cancelled the evening call so I can sleep. Silly body not letting me get to sleep until 6.30am. Being nocturnal is slightly more natural for me but doesn’t work with society. My complete randomness now works even less.

Johan has promised to take photos of light thingies. I’m going to take photos  of loom band bracelets tomorrow when I’ve slept more. Hoping for more time in chair this week πŸ™‚

 Posted by at 4:41 pm