Feb 052016
 

I’ve been wanting to blog about the communication issues I’m having, but not been able to. Luckily* I’m not the only one who has these problems, so I can just link to Hannah’s blog post about it instead. This describes what I experience pretty well.

http://stickmancommunications.blogspot.co.uk/2016/02/when-brain-fog-clouds-my-words.html

*I wish no-one had to experience this stuff, but I do feel a bit better knowing I’m not the only one.

 Posted by at 11:12 pm
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 :-)

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 :-)

 Posted by at 8:44 am
Jan 012016
 

Happy New Year!

Belated Merry Christmas and Happy Newtonmas :) 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 :)

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 :) 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 :)

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 :( 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 :(

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 :)

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 :)

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 :(

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 :) 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 :) 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 :)

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 :)

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 :)

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 :) 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 :)

33. What kept you sane?
This never really changes :) 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

30 Days

 Danni, M.E., NaBloPoMo, Physical Disability, Real Life  Comments Off on 30 Days
Nov 302015
 

I’ve managed to complete 30 days of blogging for NaBloPoMo. They’ve might not been the best but I got them done so I’m proud of myself.

Today has not been a brilliant day. I feel like I’ve come down with something and spent most of the day asleep. I’m hoping that it’s just a small setback and I’ll be feeling a bit better soon. Tomorrow Johan is home all day so I’m wanting to be awake for it.

Johan made me cheese on toast for tea which was yummy the first time I swallowed it. Unfortunately it’s not so nice the second and third times. I wish my body would digest food properly as I’m still bloated from last night’s dinner. Silly body. With that and a blocked nose making it harder to breathe I’m a bit grumpy today.

I’ve learnt some interesting things from my FitBit. On average, I wake up every 40 minutes or so when sleeping. No wonder I’m so knackered. The longest stretch I can go without waking up is about 90 minutes. I already knew I woke up a lot as I have to wake up fully to roll over, but didn’t realise it was that much. Activities that raise my heart rate above 100bpm include being propped up, rolling over, peeing, having my teeth brushed, watching television and moving my legs. Sometimes peeing and rolling over take it above 130bpm which I found interesting. I’m pretty weak but my heart is getting a workout. It also says I walk 50-100 steps a day which is funny when I can’t walk. The FitBit is useful for trying to keep an eye on the amount of activity I’m doing though.

I’m not going to force myself to blog everyday in December, but I’m hoping that I’ll be more in the habit of blogging more frequently. I’ve got a couple of longer blog posts I want to finish that take more brain power so hopefully I can get them done.

 Posted by at 11:56 pm

Christmas Loom Band Chain

 Danni, Loom Bands, M.E., NaBloPoMo, Physical Disability, Real Life  Comments Off on Christmas Loom Band Chain
Nov 292015
 
image

Christmas Chain

Today I started out super tired, with a stuffy nose, headache and sneezing. I think I’m starting with a cold which is not fun. Once I woke up a bit we watched Inside Out which is an awesome film. I’ll probably watch it again and I know some people who would really enjoy it. We also watched more Hell’s Kitchen.

I somehow managed to complete the long fishtail chain I wanted to make for securing the pillow to my wheelchair. I decided to use green and red as it’s coming up to Christmas. I really like making them as it’s relaxing and it’s the only design that doesn’t hurt my hands (apart from tying a knot at the end).

I hope tomorrow I’m feeling a bit better. I don’t like this level of exhaustion as my brain stops working properly and I need more help with figuring stuff out, especially with the carers. Breathing through my nose would also be nice. I hope this isn’t a cold.

 Posted by at 11:58 pm
Nov 282015
 

Today has been an interesting day. We’ve been a bit bad at missing my painkillers for a bit and today my pain levels got a bit out of control. Since it was obvious I wasn’t coping we decided to give me extra painkillers as I’m allowed to do so. The only problem with that is it makes me really dopey and out of it so I’ve done very little today. Johan was amused when I slurring my words and getting stuff wrong. Is like the worst parts of getting drunk without the good bits πŸ˜› It did sort my pain levels out so it was worth it.

What has happened is lots of deliveries, so Johan was busy. I still need to go through all the boxes and check everything is there and then I’ll figure out how much wrapping paper I need to get. I did get the most awkward ones wrapped as I know Johan struggles with anything not a cuboid.

Once the worst of the dopeyness had eased off we watched telly. Johan and I watched more Hell’s Kitchen and in the middle Esther joined us to watch Doctor Who. The Doctor Who episode was excellent but also incredibly creepy and will probably give me nightmares. I’m really interested in what will happen next week now.

Hell’s Kitchen has been a lot of fun to watch with Johan. We’ve just got one episode of season 11 to watch left which we’re saving for tomorrow. It really amused me how Johan got increasingly annoyed with their pronunciation of risotto (the Americans pronounce it like re-zo-toe, we pronounce it more like ri-sot-toe). There’s also the difference in pronunciation of fillet but that’s easier to understand and cope with. Risotto is one of my favourite dishes so I’m glad it’s on the menu but only Gordon Ramsey says it right πŸ˜› Of the two finalists of this season my favourite is Mary as she’s so nice.

I’ve no current plans for tomorrow. Will depend on how I’m feeling and things. I do want to make another long loom band chain to use for securing the pillow to my wheelchair so might start that if I’m up to it. I’m hoping my pain levels remain bearable now and we do a bit better at remembering my medication.

 Posted by at 11:55 pm
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 :)

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 :)

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 :) 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

Aaaaaaaaaaarrrrrrrrrrrrgh

 Danni, M.E., NaBloPoMo, Physical Disability, Real Life  Comments Off on Aaaaaaaaaaarrrrrrrrrrrrgh
Nov 242015
 

I am not coping. My brain is twisting everything to make it bad. I’m trying to fight it but it’s so hard. It was nice carers today but even then I panicked too much to have anything done. Tiny things like receiving a Facebook message or someone dropping something makes my head feel like it’s exploding. I’m not nice to be around.

Hopefully tomorrow will be better. If not will try and see the doctor as my anxiety has been getting worse for a bit and though I’m not sure she can do anything she definitely can’t if she doesn’t know about it. Bleh.

 Posted by at 8:59 pm