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 massiveΒ Candy ChaosΒ box (that was from Johan- he knows how to make me happy) Β 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 πŸ˜› 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 πŸ™‚ 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 πŸ™‚ 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 πŸ™‚

 Posted by at 10:23 pm
May 112016
 

I’m currently watching the Edinburgh Zoo Penguin CamΒ 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 πŸ˜€

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 πŸ˜€

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 Β 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 πŸ™‚

 Posted by at 1:25 pm
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

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 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
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

Penguin Sleep

 Danni, Loom Bands, M.E., NaBloPoMo, Physical Disability, Real Life  Comments Off on Penguin Sleep
Nov 152015
 

In the early hours of this morning I made most of a loom band penguin that I just need to stuff and then finish, but this morning I managed to misplace it so I need to find it so I can do so and take photos. I discovered when trying to make the wings that my hands just aren’t coordinated enough to do crochet or knitting, as I kept dropping stuff while trying to loop and having to start again. At least on the loom I only have to worry about one hand at a time πŸ™‚

I managed to be awake for the morning carer. She seemed to think 5 seconds of teeth brushing is enough. I know I don’t often manage 2 minutes but that’s short even for me. She did make me bacon and eggs though which were nice.

Since then I’ve slept most of the day and only woke up at half eleven. Hoping to see my sister Becca on Friday with her fiancΓ© so will be resting up for that. It’s been ages since I saw her so that’ll be nice πŸ™‚

Now I’m hungry so I need to ask Johan to make me some food. I just hope he doesn’t complain too much. One day I’ll fix my sleeping pattern but apparently not today.

 Posted by at 11:53 pm
Nov 142015
 

I’ve currently got a problem where I can’t sleep at night. Since that’s when other people sleep and most things happen during the day, that’s an issue. I’m hoping that I’ll soon get over the anxiety and paranoia that’s stopping me sleeping then.

Carer arrived this morning 50 minutes late, as the carer who was meant to be coming phoned in sick, and I was about to get stuff done when her perfume hit me. Since she was still standing in my doorway it must have been extremely strong as I was struggling to breathe without her coming close. I asked her to leave (no strong perfumes is on my care plan and door) and it took over half an hour for the smell to dissipate. Not what I was wanting. I was hoping to wake up for the evening carer, but they came in so quietly that Johan didn’t even realise they’d been until he heard her putting the keys back into the keysafe. I had set an alarm but it didn’t go off for some reason, so I’ll try again tomorrow. The one time I wanted to be woken up it didn’t happen πŸ˜› (I don’t blame the carer for that.)

Spoke to Sammie this evening and she beat me in the Tavern Brawl in Hearthstone. She’s definitely getting better at the game- making better decisions and understanding what to do more. I took a break to watch Doctor Who then we talked after while she was playing Minecraft and I was working on a loom band bracelet. Speaking to her cheers me up loads πŸ˜€

My setup for making a loom band bracelet. Trabasack with loom, hook and bands sorted (plus spares as I didn't know if I'd need any more).

My setup for making a loom band bracelet. Trabasack with loom, hook and bands sorted (plus spares as I didn’t know if I’d need any more).

 

I’ve managed to make two loom band bracelets in the last couple of days, both reversible and based off fishtail patterns. The first is called a reversible slipfish, and I made it with glitter jelly bands from my massive box of loom bands (it has 15,000 bands in that should keep me going for a bit). I first tried it a couple of days ago but made a mistake that was really noticeable and too far down to really repair, and I wasn’t happy with the way the colours had gone so while I couldn’t sleep last night I decided to start again. The design makes my hands sore and crampy quite quickly so I have to take a break every couple of minutes, but I managed to finish it tonight while talking to Sammie. I really like the design and I want to experiment with different ways of creating it to see what happens when I’m more confident. The only problem I really had was the glitter from the bands getting everywhere, so my bed Trabasack and top are now covered in glitter πŸ™‚ The YouTube video tutorial is atΒ https://www.youtube.com/watch?v=qTFCGpmHvEs.

The second is called the 5 pin funky fish, and I decided to use multicoloured bands for that one. As I made it using a monster loom it was a lot easier on my hands so I could go longer before needing breaks, and I managed to complete it in a couple of hours. I like how there’s two fishtails on one side and three on the other. The tutorial video is atΒ https://www.youtube.com/watch?v=WBEjpMut7Yw. I’m getting better at making them though I still have an issue with bands twisting and sometimes making mistakes, though that’s also giving me lots of practice in how to go back and fix them. I think I might be able to consider loom knitting as not needing to hold everything up and being able to put it down whenever is what’s making this possible for me, along with only needing to concentrate on what one hand is doing (and I alternate them to try and cope with cramping).

One side of the reversible bracelets. The SlipFish is on the left, the 5 Pin Funky Fish is on the right.

One side of the reversible bracelets. The SlipFish is on the left, the 5 Pin Funky Fish is on the right.

The other side of the reversible bracelets.

The other side of the reversible bracelets.

I’m hoping tomorrow to maybe be able to go out, or at least get into my chair. I’m also going to try really hard to be awake for the evening carer as I need my hair washing desperately. The next time I get into Gateshead or Newcastle when places are open I’m hoping to go to a barbers to get all my hair shaved off, but until then I’ll just need to figure out what to do with it.

I’m also looking for dystopian young adult fiction where romance isn’t one of the central themes. This is harder than it should be. Why does it always have to involve love interests, and often a love triangle? There’s more important things to be doing! Silly books. I noticed as a kid that most pop songs were about love or romance in some way, and didn’t like it. Even now I get irritated by many songs are like that. Come up with other topics please?

Before I come off puter tonight I’m hoping to catch up on some more of the Blizzcon panels I missed, and work out what bracelet to make next. This is addicting πŸ™‚

 Posted by at 11:55 pm