May 112016
 

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 🙂

 Posted by at 1:25 pm

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