Category: Loom Bands

Danni

Things Feel Weird

Autism, Computers, Danni, Gaming, Loom Bands, M.E., Mental Health, Physical Disability, Real Life

I’m doing pretty good for me. Having Johan home all the time means no waiting for urgent care and shorter waits for less urgent care, which means I’m physically doing a bit better. Not being alone in the flat most of the day is great for my anxiety, even though I’m still spending most of my time alone. Unlike most people, I am used to being unable to go out or see friends and family, so a few more months isn’t going to make much of a difference (I last got out of bed on the 29th of December).

Being that little bit better means I can do my favourite things, like play video games and read a bit. I’ve managed to watch Steven Universe The Movie, and the first two episodes of Steven Universe Future. I’ve caught up with YouTube videos I have full notifications turned on for. I’ve had video chats with Sammie, voice chats with Johan and even was in a group chat with other This is True supporters (that last one did mean I slept for most of the next two days, but was fun). I even got my loom bands out and made a strap for when I use utensils and things so they don’t go flying when I spasm (looms hold things together when they get chucked, luckily).

We’ve also had many friends and organisations check we’re okay and offered to help if we needed it. So far it’s fine. Between deliveries and our local shop, we’ve been able to get everything we’ve needed except chicken, and that we can work around. I’m very grateful we’re not forgotten and hope those who do need the help get it.

It feels really weird to be doing well during a global crisis. The reason Johan is home is because people are becoming ill and dying from a virus with no known treatment. People are losing jobs and worse. I saw on Twitter someone being told that instead of getting personal protective equipment for her PAs (impossible to source as a single person right now) she should go in a care home, despite having been exposed to someone with COVID-19 symptoms. Care homes are terrible places for disabled people even in the best of times. This is wrong, just for the need of some face masks.

There are still some struggles. As we’re doing a modified version of shielding for me (because full shielding is impossible if you need personal care and I’m technically not in the extremely vulnerable group, just in the likely to die if there’s not enough medical care available group) the lack of skin contact hand holds (we hold hands while Johan is wearing gloves instead) and hugs is hard. As is knowing I’ll not be seeing Sammie or friends in person for a while, after having plans to do so. Johan is starting to feel cooped up, so we’re trying to figure out the safest way for them to go out (the main risk being our neighbour). It’s also a bit frustrating being well enough to go out for the first time in months but not being able to for reasons outside of my control.

I’m in the middle of setting up some routines based on our current circumstances, as my previous ones were based around my care calls, which we’ve now cancelled (along with the cleaner). I’ve got a list of options for things to do so I spend less time trying to figure them out. I’m working on the best way to prompt Johan to do tasks now their routine has also been messed up, and to replace the prompts from the carers and the cleaner (the better care workers would let us know if things needed doing which helped).

One problem we’ve yet to solve is Johan getting overwhelmed if I ask for two things at once, even if I give an order to do them in. I need to do so as if I don’t, I forget the second thing while the first is being done, and Johan gets frustrated when I realise again 10 minutes or so after they’ve sat back down. I also forget it if I try to type it. I know Johan finds my memory problems one of the hardest parts of my illness to cope with, and this situation makes it really obvious.

I’m frustrated that I can’t be the carer that Johan needs. Johan is frustrated that they struggle with providing some of my care. We’re still doing mostly fine, and not having to travel to work (or volunteering) means Johan has been able to cook more which I appreciate. I just don’t know how I’m meant to feel, and that feels weird.

Danni

30 Already?!

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

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 🙂

Danni

Penguins are Best Birbs

Blizzard, Danni, Gaming, Loom Bands, M.E., NaBloPoMo, Penguins!, Physical Disability, Real Life, World of Warcraft

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 🙂

Danni

Happy New Year! 2015 In Review

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

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 😀

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 😛

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 😀 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 😛

12. Whose behaviour merited celebration?
Same answers as last year: Johan and Sammie 😛 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 😀 I can add going out to that list this year 😀

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 😛

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 😛 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 😛 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 😛

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.)

Danni

Christmas Loom Band Chain

Danni, Loom Bands, M.E., NaBloPoMo, Physical Disability, Real Life

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.