Danni

Wednesday 12th February, 2014 Danni

Preparing For An Outing

Autism, Computers, Danni, Gaming, Important Stuff, M.E., Mental Health, My Little Pony: Friendship is Magic, Physical Disability, Real Life, World of Warcraft

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 🙂

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 🙂 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 😛 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 😀

Saturday 18th January, 2014Saturday 18th January, 2014 Danni

An Idea

Autism, Computers, Danni, Gaming, M.E., Physical Disability, Real Life, World of Warcraft

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 🙂

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 🙂

Sunday 5th January, 2014 Danni

Outside!

Danni, M.E., Physical Disability, Real Life

When I woke up today (around midnight as my sleeping pattern is still messed up due to being awake 16 hours then sleeping for 12) and after the normal morning blehness had worn off, I felt about as well as I had the last couple of days. As there was no power cut to deal with, I decided to try and get into my wheelchair. With some help from Johan (lifting me from the bed into the chair) I managed it and didn’t feel too bad. Since the living room is currently inaccessible to me (the double bed I was using before I got the hospital one is in there, along with other stuff) I decided that I wanted to go outside. Johan took me out and I spent about 5 minutes looking at the trees, the stars and down the hill towards the main road. It was amazing!

When I got back into bed I needed to rest for a bit, but I wasn’t too bad afterwards. A bit shaky, dizzy and nauseous, but nowhere near as bad as the last few attempts (when I tried and failed to go to hospital for an appointment). I have discovered that I find the footplates too hard now while only wearing socks (I used to be fine with bare feet) and getting in and out is still the worst part, but once I had the cushions in place to hold my head up and was settled I felt okay.

I’ll have to see how I am over the next few days to see if it’s been too much or not (problem with post exertional malaise- you don’t know how ill you’re going to be immediately) but if I continue to be okay I’ve got plans. Next up is getting into the living room (will need to make space for that), then it’s going out somewhere. Current thoughts are the local shop (about 3 minutes away, pretty accessible), library (5-10 minutes walk away, has a Changing Places toilet, is quiet) or into central Gateshead (5 minutes away by bus, Changing Places toilet in the Civic Centre, has changed massively since I was last there). I’m mentioning the Changing Places toilet as now I use pads and have a wheelchair of massiveness normal disabled toilets are no longer accessible to me, but the Changing Places toilets have plenty of room, an adult sized changing bench (often adjustable, including the two I mentioned) and a hoist (which we can’t use yet as Johan doesn’t know how and I don’t have a sling, but will be useful when that’s sorted). Not being able to use the hoist will make it a bit awkward, but between the two of us and adjusting the bench so it’s slightly lower than the chair should make it easier. It’s a ton better than trying to lie me on the floor of a normal disabled toilet and then trying to get me up again 😛 This is a link to the Changing Places website.

So I’m excited. I’m really glad that I’ve so far had three days of being much better, and can even think about planning stuff. There’s still a chance I’ve overdone it and will drop back down, in which case I’ll take it as lesson learnt and just remember being able to do things until the next time (I’m scared it’s going to happen, because it has before). It’s incredibly tempting to keep doing stuff while I’m feeling so good in comparison to my recent normal, yet I know I need to take it slowly and I’ve got plenty of time to sort things. Still, rest and chocolate seems to be helping so I’ll keep on going and praying and hopefully I’ll get there 😀

Saturday 4th January, 2014 Danni

Improvement!

Computers, Danni, Gaming, M.E., Physical Disability, Real Life, World of Warcraft

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 😀

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 🙂

Thursday 2nd January, 2014 Danni

2013 In Review

Danni, M.E., Penguins!, Physical Disability, Real Life, Review

My now annual review quiz of the year 🙂

1. What did you do in 2013 that you’d never done before?
Get an adjustable bed. It’s made a massive difference to my quality of life.

2. Did you keep your New Year’s Resolutions, and will you make more for next year?
I kept three of four well. I’m going to keep working on the fourth this year. I’ve made some more for 2014 (in the previous blog post).

3. Did anyone close to you give birth?
Nope.

4. Did anyone close to you die?
No.

5. What countries did you visit?
Antarctica via the telly (yes, it’s a continent). Really though, I didn’t go further than about a mile away from home (the local hospital- the care home I stay in is even closer).

6. What would you like to have in 2014 that you lacked in 2013?
A hoist and a shower chair so I can get out of bed and get clean 😛 Better health would be nice as well (and if it’s loads better I wouldn’t need the hoist).

7. What dates from 2013 will remain etched upon your memory, and why?
I can’t remember the date due to brain fog, but I think Sammie’s visit will be remembered for a long time 🙂

8. What was your biggest achievement of the year?
Seeing Sammie. Also probably visiting Johan in hospital 🙂

9. What was your biggest failure?
My health.

10. Did you suffer illness or injury?
Overall I had the worst year so far health-wise, and was bed-bound almost the entire time. I had a kidney infection as well that is still causing me problems months later.

11. What was the best thing someone bought you?
I don’t think this question is ever going to be easy. Johan got me a Blu-ray player and Spy in the Huddle to watch on it. Someone got me the softest penguin poncho. Sammie got me Oggy, a toy dog with a heart on saying “Love you… with all my heart!” which was incredibly thoughtful. A friend gave me loads of Christmas presents including a penguin adoption, penguin pyjama bottoms and the cutest little purple penguin. Seriously, I’ve been incredibly spoilt and I know I’ve missed some awesome presents here.

12. Whose behaviour merited celebration?
Johan’s again. My friends who have been there for me.

13. Whose behaviour made you appalled and/or depressed?
Tories. Lib Dems. People who spout hatred. Atos. Whoever decided that benefit delays were not a problem (I’m lucky that mine are sorted, but Johan’s PIP claim is still waiting for ATOS to contact him).

14. Where did most of your money go?
Food, bills, disability stuff and care home fees.

15. What did you get really, really, really excited about?
Sammie 🙂 Talking to Sammie was amazing. Seeing Sammie was amazing. She is an amazing person.

16. What songs will always remind of 2013?
What does the fox say? And Saturday by Rebecca Black 😛

17. Compared to this time last year, are you:
a) happier or sadder?
Happier 🙂
b) fatter or skinnier?
About the same, as unfortunately I lost some of the weight I regained over the year. I’ll get it back though 🙂
c) richer or poorer?
Richer, as although my income hasn’t increased my outgoings have dropped a bit.

18. What do you wish you’d done more of?
Keeping in touch with people. Getting out of bed.

19. What do you wish you’d done less of?
Relapsing.

20. How do you plan to spend Christmas?
I spent most of Christmas sleeping, as I was in the middle of a relapse. I’ve got my Christmas dinner to look forward to and I got some lovely presents though 🙂

21. Did you fall in love in 2013?
I fell more in love with Johan, if that counts? 🙂

22. How many one night stands?
None.

23. What was your favourite TV programme?
Doctor Who, My Little Pony: Friendship is Magic and Penguins of Madagascar 🙂

24. Do you hate anyone now that you didn’t hate this time last year?
Hatred is such a strong term. I still strongly dislike the government but I believe that was the case last year as well.

25. What was the best book you read?
Raffie Island and Queenland from the Portal series by Dee Kirkby for children’s books, Let’s Pretend This Never Happened by Jenny Lawson for adults.

26. What was your greatest musical discovery?
I didn’t listen to much music this year, so I can’t think of any.

27. What did you want and get?
To see Sammie 🙂 A Blu-ray player and Spy in the Huddle on Blu-ray. Purple penguins.

28. What did you want and not get?
My health to improve, and a hoist so I could get out of bed.

29. What was your favourite film of this year?
I watched The Hunger Games. That was awesome.

30. What did you do on your birthday?
Slept and had a takeaway. I wasn’t doing brilliantly.

31. What one thing would have made your year immeasurably more satisfying?
Being able to get out of bed, being able to communicate more with friends and family. I was still happy though 🙂

32. How would you describe your personal fashion concept in 2013?
Purple penguin hat 😛 Also wearing a purple Snuggie a lot over pyjamas.

33. What kept you sane?
Chocolate, penguins, Twitter and friends 🙂

34. Which celebrity/public figure did you fancy the most?
I don’t think there were any this year.

35. What political issue stirred you the most?
Welfare reform rubbish, including Bedroom Tax, PIP, ESA and other stuff.

36. Who do you miss?
Sammie, my friends.

37. Who was the best new person you met?
I honestly don’t know.

38. What was the best thing you ate?
The chip I had from Johan’s takeaway when I started recovering from my relapse just after Christmas 😛

39. Tell us a valuable life lesson you learned in 2013?
As much as I want to, I can’t save the world or even my friends. I can try and cheer them up a bit, though.

40. Quote a song lyric that sums up your year:
No songs, instead Poseidon wants his self portrait here 😛