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

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 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

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