Busy March

Although the beginning of the month took me by surprise (yesterday I woke up late after a 16 hour sleep and was convinced it was still February until I got my Brew of the Month club mail in World of Warcraft) it’s shaping up to be quite a busy one for us.

Becca is staying with us next weekend as she’s going to Newcastle Film and Comic Con and we live much closer than she does (she lives in the middle of nowhere with a rubbish bus service and worse internet connection, we’re quite central with decent buses, walking distance from Newcastle if necessary, and awesome internet). I wish I could go with her as it looks to be amazing but will have to experience it second hand. Her staying here should make that easier though πŸ™‚

Vicky has invited Johan to go see the ballet in Leeds the week after, and he’s going to go down a couple of days early to see his parents and friends and so on. Becca has kindly offered to look after me so I don’t have to go into a care home πŸ™‚ After the ballet Vicky is going to come back with Johan so I can see her before she goes gallivanting across the world. It’s been a while since I last saw Vicky in person so it will be awesome. She’s a low energy person so I’m hoping to be able to chat while she’s here πŸ™‚ (Different people require different levels of energy for me to be able to be around them- it’s not a bad thing, or related to how much I like the person, just something I have to take into account when it comes to visits and things.)

The week after that I have the CFS team coming out to see me. It was meant to be to discuss my visit to see my consultant but since that hasn’t happened I’m not sure what we’ll be discussing. They are helpful but exhausting so that is also a big event in my calendar.

I am not doing amazing at the moment. The curtain has been up for a while and today I’m non-verbal again. Moving causes my back to go into spasm so I’m trying to remain very still. Johan has dosed me up on painkillers and an antiemetic to help with the nausea and heated penguins so I’m as comfortable as I can be, which is good.

Yesterday my carer went to Primark for me to get me a penguin onesie. Although I have one, it’s huge (XL men’s) and I wanted one that would fit a bit better. They were reduced and since she was going to be in there anyway she offered to get one for me. I love it and can’t wait to be well enough to try it on πŸ˜€

My World of Warcraft playing is good at the moment. Not well enough to do any raids (not even LFR) so I’ve been concentrating on levelling. My blood elf paladin Catalia is now level 73, and my recruit a friend character that I’m levelling with Becca, Caitlyna, has reached level 60. We’ll be going to Outland when we next play together πŸ™‚ It’s interesting trying to teach her- she wasn’t doing well on DPS in dungeons (she was asked about it during one of the runs- once I explained she was new they were fine though) and I discovered it was mostly because she wasn’t using charge (her character is a fury warrior). I’m also trying to teach her not to click the abilities and to use the keyboard instead, but she’s finding it difficult. Unfortunately unlike me she’s unable to touch type which helps a lot for being able to use key bindings without looking, but I’m hoping with practice she’ll be able to manage it at least some of the time. I showed her where the training dummies were in Stormwind and asked her to install a damage meter so she’ll be able to practice πŸ™‚

I’ve been watching a lot of Foster Kitten CamΒ recently. The Ghostbuster kittens are so cute! It was sad last night though as Peter, one of the kittens, died in Foster Dad John’s hands. It upset me quite a bit even though it’s not uncommon for kittens to not survive. He was so active, constantly trying to escape, and I know he will be missed by a lot of people. His litter mates, Egon and Ray, are also really active and keeping their mamma Janine busy. Earlier today one of them escaped the box and mamma had to carry him back in πŸ˜›

I tried to watch some Hearthstone earlier but not quite got the concentration for it. I think I’ll go do some easy levelling or something in World of Warcraft. I’m hoping my body starts behaving better soon but until then I’ll just do what I can to not get worse and distract myself from the worst of the blehness.

Bedrooms and WoW and Stuff

A small bedroom with a single bed in the corner with purple bedding, a clothes rail with hanging shelves, and boxes with items in. There is clear floor space in the middle.
A small bedroom with a single bed in the corner with purple bedding, a clothes rail with hanging shelves, and boxes with items in. There is clear floor space in the middle.

I’m now nocturnal, thanks to sleeping most of the day on Thursday when I was meant to be going to the hospital. I’m not concerned about this, as otherwise I’m not doing too bad for me (so long as I don’t move, I’m not touched, and I don’t eat) and I figure it’ll sort itself out in its own time.

For Valentine’s Day I kicked Johan out so that Becca and I could sort out his bedroom. He went to see The Lego Movie (he really enjoyed it and said it was very good). Becca brought all the boxes in Johan’s room into mine so I could work out where things go, and after a lot of work (mostly by Becca) we got it sorted. When she’d finished, she made the bed, put Patricia (the penguin) and Charlie (the Jedi monkey) on top and took a photo so I could see.

Johan was very happy with this, and we decided that on Saturday he’d replace the single bed with the double bed I used to use, as there was now room to do that. He also moved the remaining boxes into the cupboard, dismantled the clothes rail, moved in the spare computer desk, and a spare kitchen cupboard we happened to have for his clothes (until we get him a chest of drawers). He’s now wanting to put his posters up (we can’t paint until I’m less sensitive to smells or able to disappear for a few days) so it feels more like his space. Since he’d been sleeping in what was effectively a storage room for two years, I’m hoping he enjoys having a proper room (and having the double bed- he’s yet to tell me which is more comfortable though).

The same small bedroom, mostly filled with a double bed with purple bedding. There is a computer desk in the corner, with a computer chair in front of it. There is very little space between the two.
The same small bedroom, mostly filled with a double bed with purple bedding. There is a computer desk in the corner, with a computer chair in front of it. There is very little space between the two.

This means our flat is getting closer to being sorted. Now the living room is the main room that needs working on, but that shouldn’t be as difficult as Johan’s was. We have a lot of boxes to sort through and I need to get some bookcases for all my books. The plan is to get a daybed frame and use that with the (now spare) single mattress to replace the sofa, so that if we do have someone staying over they’ve got somewhere to sleep, and maybe I’ll be able to lie down in the living room when I’m doing better. This is mostly because we don’t otherwise have room for all three beds (my hospital bed, the double bed in Johan’s room and the single bed) and that mattress is really comfortable so I don’t want to get rid of it πŸ˜› Our sofa is rarely used as such anyway (Johan spends all his time in his computer chair, and I’ll be in my wheelchair if I go through there) so having a daybed is a better idea. We’ll also be able to use bedding and cushions to make it purple πŸ™‚

Becca went home yesterday (Sunday). I think she enjoyed her stay here, even though it included a lot of hard work. It was nice for us as well- having someone else to talk to and just be with for a few days was good, and she has a pretty good understanding of my needs so I didn’t have to worry about offending her or upsetting her if I needed some time alone. We have determined that she doesn’t want to do personal care as a job, but she’s able to provide mine okay so it meant Johan got a bit of a break, even while he was here.

Since I’m not doing too bad, I’ve been playing probably too much World of Warcraft. In the last day I’ve got my Pandaren Monk Dannila to level 90, and my first Battle Pet to level 25. After I wake up I’m going to be doing some recruit a friend levelling with Becca, which will be fun. We’re currently level 56 and I’m hoping we’ll reach level 60 so we can get flying (I’m supplying the gold, as my gold making is ticking over even though I’ve barely worked on it recently). Now I’ve got my first max level battle pet I’m finding it much easier overall, so it shouldn’t be too long before I have several of them. I’ve got a list of goals for World of Warcraft so I have some idea what to work on, especially as different things require different amounts of brain power/concentration (I’m not well enough to raid at the moment but pet battles and levelling are fine).

I still can’t watch My Little Pony, which is frustrating. Not sure why exactly but I just can’t seem to understand what’s going on. This is especially confuzzling as I’m able to play World of Warcraft okay. The same thing applied to trying to watch the Winter Olympics- I had no idea what was happening, though the figure skating I saw was pretty. I’m managing to read okay (even if I can’t remember it afterwards) so I’m going to guess it’s a problem with auditory processing being particularly bad at the moment. That’ll also fit with me struggling to understand Johan when he’s talking to me. I need to get the subtitles on for Ponies but that requires brain power and mine is limited πŸ˜›

I’m happy. Johan has been cheerful recently as well. I’ve done some productive things (cancelled Netflix and Unblock US as we’re not using them right now- we’ll resubscribe when we want them) and I’ve got a plan for other things that need doing so I can sort them when I’m next able to. Even though I might need to wait until June to see my consultant (that’s when my next appointment is- I’m hoping for a cancellation) I feel like I can get things sorted and moving forward now. I still have some problems (my body does not like me eating- doing so causes bloating, nausea and pain no matter what I’m having) and I can’t get out of bed yet, but they will get better.

Preparing For An Outing

Tomorrow morning I’m going out properly for the first time in quite a while. I have a hospital appointment to see my consultant at my GP’s request. It’s not at my local hospital, so it’ll be the furthest I’ve been in well over a year (it’s in Newcastle so not excessively far, luckily). As I’m not currently well enough to sit in my wheelchair at all (unfortunately I’m yet to have a repeat of the good days last month) I’m going by stretcher.

This is a big event, and requires a lot of preparation. I’ve selected a pair of pyjamas that are fancy enough to be worn as day clothes, yet are still comfortable. With them I’ll be wearing my arm warmers, as they’re short sleeved and my arms get cold (and in the event I need a blood test, they’re easy to take off). I’ll also be wearing some warm bed socks in an attempt to stop my feet freezing. I’ll need my tablet in case I lose speech and to communicate with the outside world if I’m up to it, and my phone for internet.

To accommodate my sensitivities, I’ll be taking my sunglasses, eye mask, ear plugs and ear defenders. Since too much light and noise make me much more ill I can’t be too careful there (hospitals are not known for being restful places so I try and avoid going there when possible). I’ve not found a decent way to deal with my sensitivity to smell so I’ll be taking an antiemetic and mints and hoping it isn’t too bad. Spare pads and wipes will come along just in case, and I’ll need my Hydrant to prevent dehydration. I’ve got a couple of blankets to try and deal with my temperature fluctuations, and will have a cushion or two to try and make it as comfortable as possible. I’ll also have my appointment letter, a short explanation of my communication needs/what to do in an emergency, and a list of important things to talk to the doctor about.

In a strange way, I’m looking forward to it. Getting out of bed is so rare for me that even going to the hospital is exciting. There’s a pretty good chance it’s going to make me crash afterwards (I’m currently so touch sensitive that even hugs make me more ill, and movement makes me feel horrendous) but we’re planning for that. I have lots of milkshakes and stuff in as my chewing is dodgy already and the easier ways to consume calories I have, the better. Seeing outside my bedroom will be fun (assuming I’m well enough to wear my sunglasses rather than needing my eyemask- otherwise I’ll just have to listen :P).

Since I last blogged I’ve seen the district nurse, who was the one to recommend getting stretcher transport when we explained my problems with trying to go by wheelchair, the CFS team who have shown Johan how to prevent my legs from unstraightening when I’m not well enough to straighten them myself and were reassuring me about stuff, the dietician who has prescribed some milk based supplements because of my new intolerance to heavy juice drinks (can have squash but not smoothies, proper fruit juice, fruit flavoured milkshakes or fortijuice) and my eating being really poor again, and the social worker who was doing a care review and she’s going to pass on our concerns for us (I’ve not been well enough to email the agency) and contact the doctor about getting the supplements. All those visits have meant I’m not doing as well as I was before them, but I’m not that bad for me.

Johan went to Manchester to see a ballet with Vicky, and my sister Becca came over to look after me, which was good. She’s also here now, originally to go see someone from the get back to work people (she’s in the work related activity group for ESA- they are doing the work related activity) and also just generally helping us out a bit. The break helped Johan a lot and he’s overall been more positive and able to cope. His trial for the raid team in World of Warcraft went well, so he’s now a permanent member and they’ve since got Siegecrafter Blackfuse Heroic down in 25 man, so there’s only two bosses left for them to kill. He’s really enjoying it and it’s good for him to have something to focus on There’s another discipline priest on the raid team that is his main competition, and he’s occasionally been beating him while less geared so that has made him very happy πŸ™‚

I’ve been playing quite a bit of WoW, mostly doing my daily cooldowns, Timeless Isle dailies on Danni and levelling my lowbies. I invited Becca via Recruit a Friend and we’re levelling some characters together- she’s a warrior and I’m a hunter. I don’t know either class so that’s been interesting πŸ™‚ For some reason I’ve not been able to watch television, even easy things like My Little Pony- my brain just can’t process it right now. I watched a little of the figure skating in the Olympics but I was absolutely exhausted afterwards, in a way I don’t get when I’m playing WoW. Danni is weird πŸ˜› I’m so glad I’m still able to get on my computer and play WoW though, as it’s helping me cope with everything, especially since my digestive system really hates me now (recently it’s been taking between 12-36 hours for food to leave my stomach, which I know because I keep bringing it back up and it’s identifiable).

If I don’t blog for a bit then it’ll be because I’m recovering from the hospital appointment. I’m hoping it won’t take too long though as I have so many things I want to blog about as soon as I can πŸ˜€

An Idea

So I had those really good days, and got to go outside. Then I had not so good days. At one point I thought I might be relapsing again but luckily it didn’t get that far. Still, I had some good days and I’m happy about them. Since then I’ve watched the Doctor Who Christmas episode (it was weird, but I think I liked it), watched several episodes of My Little Pony, watched some of the films I recorded over Christmas, and have read a couple of ebooks. Most of them with very little concentration but yay!

I’ve also been playing World of Warcraft a bit, doing dailies on my level 90s and levelling my Shaman and Monk. My WoW guild has swapped to 25 man raiding after absorbing some of the members of the previous best guild on the server that died not long ago, and is now 11/14 heroic 10 and 25 man. I’m not raiding (not well enough for the flex raids at the moment- I wouldn’t attempt heroic with how bad my brain is even at my current best) but Johan is currently on trial for a spot as a disc priest. He’s been raiding since the swap to 25 man and he’s really enjoying being at the more top end of play. There’s another disc priest in the guild (who is really good) and Johan isn’t doing too bad in comparison, especially considering he’s less well geared. He says he’s improved a lot this week over last, and I’m really hoping he gets a permanent spot. It took a lot of persuading from several raid members to convince him to apply, something I’ve been nagging him to do for months. Overall I’m really proud of how well the raid team is doing, as they’ve caught up to their 10 man progress in 2 weeks, and there hasn’t been much time to get to know each other and work together. I was seriously impressed with their Spoils heroic kill, as they were only giving it one attempt that night and they got it down in one πŸ™‚

Anyway, my idea. For quite a while now I have wanted to set up a local tabletop gaming club (board/card games). It’ll be mostly for autistics, but other people would be welcome as well on the understanding that it’s an autistic safe space (I know it can’t be universally accessible to everyone but I’d want to make sure people were comfortable being autistic there, and make sure there’s somewhere quiet for those who find noise a problem). Currently Autistic North East does social meetups, but they are nearly always held in a pub and I know that’s a problem for some people (including me at times, even before I got ME). Both Johan and I like games, and want to try more, but I’m often not well enough and quite a lot of them require more than two players. My idea was to have a selection of games available, from snakes and ladders to Monopoly to Settlers of Catan and Munchkin, and people could play the games they wanted. I know I find it easier to socialise if there’s a distraction available, and if nothing else it would be fun to play games.

The main problem with my idea at the moment is I’m too ill to do anything about it. Being stuck in bed means it’s on hold. When I am well enough to do it (in the future) I’ve got quite a bit to work out and plan. I’d need to find a space to hold it (preferably central Newcastle as it’s easy to get to from most of the North East), somewhere we could meet on a regular basis without too many changes (as change is bad). It would preferably be not too public and have somewhere quiet nearby that people could go to if things are getting overwhelming. Ideally there would be some facilities for basic snacks and drinks, either to purchase or to consume if brought in. We’d need tables and chairs (how many would depend on how many people would be interested, something I’d need to find out closer to the time) and figure out the best way to provide games (either bringing in favourites from home, purchasing some especially for the group, or both). It might need some form of funding (especially for purchasing of games, and maybe for the venue space if I couldn’t find somewhere for free), and there might be some other legal stuff to consider that I’ve not discovered yet. Then it could only go ahead if people were interested, and I’d need to advertise the group to make sure local autistics know it exists. And it’s quite possible I’ll need some help with organising it.

I’ve thought quite a lot about it. I can’t plan it more than just the basic idea though. I was originally going to propose it to Autistics North East (and might still do so) but am wondering if it might work better being separate. I first thought about it after hearing of a similar group in Aberystwyth that a friend goes to and enjoys and thought it would be great for this area. That was years ago now though (I was still able to get out and about) and I’ve been sitting on it since. I’ve also been looking generally for tabletop gaming groups/events in the North East as I’d want to go when well enough and I think Johan would enjoy it, but not found anything yet. Even if they existed I’d still want to arrange an autistic friendly one if there was enough interest, but as that’s probably years away it would be good to know of an alternative until then.

So that’s my big idea- making the world a bit less sucky by playing tabletop games with other autistics. Don’t forget to be awesome πŸ™‚

Improvement!

For some unknown reason, I’ve started improving. Not just the small improvements I normally get when coming out of a relapse though- I feel much stronger, and have so far sat on the edge of the bed unsupported for 30 seconds (Johan stayed there to be sure I didn’t fall) and sat on my bed for much longer. Then I cuddled Johan for half an hour because I’d not been well enough for hugs for weeks and I really wanted them.

Last night (unfortunately I’m nocturnal at the moment but my sleeping pattern will fix itself when it wants to) I found that after the normal blehness that comes from waking up had worn off, I was feeling just as strong as I did the day before. I was playing some World of Warcraft and planned to try getting into my wheelchair, when the power went off. Unfortunately there was a fault with an underground power line and it took over 4 hours, cutting the cable and adding fuses (according to Terry at Northern Powergrid, who was keeping me informed via Twitter) to get it back up. When the estimate changed from 1am to 4am (at 1.30am) Johan went under my bed and lowered the head of it manually, as although I was doing okay with having the head of the bed up we didn’t want to risk me becoming more ill. Without the bed working or lights (we had a couple of torches though Johan had misplaced some of them) getting into the wheelchair wasn’t feasible so has been postponed until I next feel well enough. If I’m lucky that’ll be after I’ve woken up again πŸ˜€

I honestly cannot explain why I’m doing the best I have in about 2 years. Going from incredibly weak (unable to even roll over or raise my head off the pillow weak) to being able to support myself for a bit in less than 2 weeks is amazing. I’m incredibly grateful for it, and I’m hopeful it’ll continue and I might even get better completely. If not though, I’ll remember these days as good days anyway. I think resting plenty might have had something to do with it, and there’s prayer as well which I know can work sometimes, though not always as expected.

I’m not completely better. My digestive system still hates me, I’m still getting a lot of nausea, pain is still a big problem. I still have a some muscle spasms, though they’re mild at the moment. But I’m doing so much better than I was even at Christmas that it feels amazing, and I really want this to be a long term thing. I’m praying πŸ™‚