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Body Naughty

Autism, Computers, Danni, Gaming, M.E., Mental Health, NaBloPoMo, Physical Disability, Real Life, World of Warcraft 9 Responses »

May 172013

I wish my body would make some sense sometimes. I can watch Doctor Who and go on computer and play World of Warcraft. This is all yay! I feel okay so long as I don’t try and sit up or be touched.

Not being able to sit up (I keep fainting- highly inconvenient) means I’m stuck in bed (also because we not got a hoist). Not being able to be touched without becoming really ill means I have to be really careful about being washed, dressed, or moved (I can roll and shuffle a bit on the bed, but that’s about it due to muscle weakness and stuff). Also means that there’s very little personal care that my carers can do (if I have too much done, I get really ill for too long so they no want to do that).

Brain hasn’t been working for writing stuff which means no emails, blog posts or tweets for ages. Very annoying. Still not heard from the OT or Social Services. Still having problems with the neighbours. Missed my second appointment with wheelchair services and looks like I won’t be going until a hoist is sorted. Missed loads of other appointments too, and having to accept that I can only have home visits now as can’t get out.

Bought Desire Z as needed keyboard on phone. Not as easy as tablet to use but much better than trying to type on touchscreen with hands that don’t work properly.

Missed Autism Awareness/Acceptance Day/Month, and ME Awareness Day/Week. Also Blogging against Disabled Disablism Day. I wanted to participate but beyond my capabilities.

Apart from a meltdown caused by missing the wheelchair assessment (I’m pretty desperate now for a wheelchair that fits and works for me) not been too bad on days I’ve not had a wash or changed clothes or had teeth brushed or anything. If I have, then I really really ill (and for a while afterwards). Trying to manage it in bits. Pad changes are the most I can cope with, and even then if touched too much then make ill. Carers do more touching than Johan which means I do better when he does changes. Too ill to teach carers how to do pad changes properly.

Saw good friend. Didn’t make too ill. Made happy. Was good. Hope to see good friend again soon.

Still think I’d be better at running the country than the present government, even with current brain problems. Least I know who to ask for help and what’s fair.

Sorry blog post broken like body. Hope for proper post as soon as brain works for writing again.

Stuff That Happened

Autism, Computers, Danni, Gaming, M.E., Mental Health, Penguins!, Physical Disability, Real Life, World of Warcraft 8 Responses »

Feb 092013

Danni in the hospital restaurant

A quick update post, as a longer rambly post is beyond me.

I’m not as bad as I was. Still nowhere near good, or the level I was in November before the relapse started, but three pillows happens sometimes.
Johan went to London and met John and Hank Green, and saw Maureen Johnson. John said “hi” to me via Johan. I got the signed copy of The Fault in Our Stars that has John Green’s signature in purple sharpie and a green Hanklerfish.
Johan then went to Leeds to see his parents and met up with a friend. They had good noms.
Vicky stayed with me. It was good. I managed not to spend too long chatting to her, helped by having no speech when she arrived.
Vicky is good at the personal care thing, but there are areas that the dyspraxia really shows. Like wiping my bum. And spilling as much porridge on me as ended up in my mouth while she was feeding me.
Saturday (when Johan went to London and Vicky arrived) I was very ill. I nearly ended up going to A+E with urinary retention but my bladder decided to stop spasming in time. Was very painful, and I was worried it would cancel Johan’s trip.
Just after the last post, Matilda died. We bought a new, shinier motherboard and CPU, gave Johan the motherboard (I got his- the new one was the one up from the one he had) and I installed Windows and Kubuntu. It is much much faster than my old one. My computer is still called Matilda.
I’ve been very up and down. I go from complete paralysis to being able to go on Matilda, sometimes in the same day. Yay fluctuating illness!
I am one day away from Exalted with Golden Lotus and the Klaxxi in World of Warcraft. I’ve not been well enough to go in and finish it.
Many of my friends are leaving my guild in World of Warcraft as they want to raid more than my guild can offer
I’ve lost more weight. We need to tell the dietitian. She hasn’t sent the supplement prescription details to my GP for my GP to prescribe yet.
I’ve seen the GP. We have agreed I can take double tramadol when I need it so long as I don’t exceed the daily limit of 8 tablets. That is fine by me.
I went to the hospital for a scan. It was the first time I’d got out of bed (excluding the half getting out of bed to weigh myself followed by collapse that I’ve done a couple of times as I needed to check) since November.
The ultrasound was clear. That’s both good (there’s nothing seriously wrong with me in that area) and bad (we don’t know exactly what is causing my pain).
I managed the trip with lots of drugs (also how I managed the weighing myself) and because I was having a really good day anyway (for recently). We went to the hospital restaurant after the scan where I had a cup of tea and a pizza panini. The cup of tea was amazing, especially since everyone else had been drinking tea and I wanted it desperately.
The upstairs neighbours are still being very noisy and inconsiderate. I’ve not had a reply to my email yet so I need to redo it and send it to the housing office proper. I don’t have the spoons to do it.
Our opposite neighbour had his door smashed in. I was very brave and told the police (through Johan) what I heard. Considering the cyclizine had kicked in and I was half asleep when it happened and even more so when they arrived, I think that was why I managed it as I was too tired to panic.
There is a CCTV camera in the upstairs part of the block (in the communal area). We did not know this until the police asked Johan who owned it.
Buses are still more comfortable than ambulances when you have a wheelchair with decent suspension that tilts and reclines.
Johan has started taking Seroxat. He is getting some unpleasant side effects but hopefully they will ease off soon. We’re hoping they’ll help with the depression and anxiety.
Vicky brought up the idea that Johan may have ADD after watching how distracted by everything he gets when trying to do something (like packing for his trip). It makes sense. If nothing else, I’m going to look into the self help management techniques to see if they can help him now I’m not well enough to organise him.
I’ve been able to re-read some children’s books. But replying to Facebook messages is too hard. My brain fog is weird.
I got sucked into TV Tropes again for a week. I’ve only just got out, but it did lead me to read some fan fiction (with commentary) and start re-reading the St Clare’s books by Enid Blyton again.
I have forgotten loads of stuff from the St Clare’s books. Seems I remember Malory Towers better.
There is a load of bullying in the St Clare’s books. I missed that when I was a kid.
One of my favouritest people in the world has got engaged
I have amazing, awesome friends.
Johan is brilliant, and I can’t imagine being without him.
Penguins should rule the world. They’d do a lot better than silly humans.
Purple is the best colour.
Even my short updates end up really long. Guess I have a lot to say even in bullet point form.
I hope I’m getting better, but won’t know for sure for a few days.

I want to blog more but writing stuff is harder than reading it. So maybe I keep reading children’s books and if I’m stuck, I write with bullet points as it seems my blog posts end up just as long anyway

Hair Be Gone

Autism, Computers, Danni, Gaming, M.E., Mental Health, Penguins!, Physical Disability, Real Life, World of Warcraft 3 Responses »

Jan 092013

An update post! Christmas ended up being about as good as it could have been, considering I was still deep in relapse. I got my voice back, I opened lots of presents, we played Monopoly (Johan was the banker and moved the pieces, and I used a dice app on my tablet so I just had to tap the screen to roll). I won Instead of Johan cooking a full Christmas dinner that I probably wouldn’t have eaten much of anyway, we got a takeaway (I still didn’t manage much, but feel less guilty when it’s a £3 kid’s meal). I even managed to get dressed in clothes I’d bought for the occasion, a penguin jumper and velvet skirt. It was nice, though not what I would have wanted if I’d been better.

This was the first Christmas where I didn’t listen to a single Christmas carol or song. This wasn’t through choice, as I adore Christmas music. Unfortunately, listening to music is just too much for my body right now and makes me feel horrendously ill. I also didn’t watch any telev.ision, not even the Doctor Who Christmas special. This is the reality of severe ME, and I’m not even right at the bottom of the scale- I’m close, but it can get worse. I enjoyed my Christmas, though I got horrendous payback afterwards.

New Year’s Day I improved slightly. Funnily enough I had a horrible day on New Year’s Eve, with more pain than I could deal with, and being very upset and grumpy as everything was just too much. Normally I’m quite happy and positive even when I’m really ill so that was not the norm for me. I couldn’t sleep but I noticed in the morning of New Year’s Day that I wasn’t feeling quite so bad. My light sensitivity had decreased a bit so I no longer needed sunglasses in a darkened room, and could get away with my normal glasses again. Moving was a little easier and I could now manage two pillows. Chewing has been a bit on and off since then but I’ll take any improvement I can at this stage.

We made the decision during the middle of December that as I was struggling so much with the bedpan, and my bladder is evil (bladder spasms mean that I can feel like I need to go urgently for hours, but can’t get anything out or it’ll come out when I’m not expecting it) we’d try using incontinence pads for a bit. It would also mean that Johan wouldn’t have to get up quite so often in the night to help me with the bedpan now I could roll over myself. We’d originally tried them in the December 2011 relapse but it failed as I just couldn’t go in the things, but this time it was a lot easier, possibly as I was already slightly incontinent. Both of us are able to sleep better now, and though it’s extra expense it’s easily justifiable as it makes both our lives easier, and means I’m no longer in as much pain from being on the bedpan for hours at a time. I do still use the bedpan during the day when my bladder is behaving, as I want to reduce the likelihood of sores and things, but having the option there is great until I’m able to use the commode again (when I hopefully won’t need them at all).

I got my DLA decision through just before Christmas as well. I’m staying on higher/higher for another two years. This was probably the best result we could have had, and a massive relief to us after spending 3 months on the form. I’m in the middle of writing another post about it so will leave that there.

I got many Christmas presents, and among my favourites were penguin thermal socks (two different people got me some) and a new baby Emperor penguin. This penguin has become one of my bed penguins (along with Penguin, Penelope and Purple Penguin when she’s not exploring) and is called Poseidon. He is super excited about everything and wants to learn. He convinced me to help him set up a Twitter and email account and wants to blog, but I’ve told him he needs to wait until he’s used to tweeting first. Penny and Penguin (his mummy and daddy) are happy with him doing this, and are trying to teach him everything as well as providing him with lots of fish.

Another of my Christmas presents was a pair of pyjama bottoms in a size 10. I knew I’d lost a lot of weight, but was still buying a size 12 because I wasn’t sure what size I was exactly. The pyjama bottoms turned out to fit perfectly, and it meant I was much more comfortable in bed wearing them (as they didn’t ride up the way that my far too large ones did). Last week I decided to buy some new pyjamas that actually fit, so raided the last of the Christmas money from my savings account and bought a few pairs from Matalan. I’ve only tried one pair (that I’m wearing now) but they’re loads comfier than the ones that are bigger. One of the sets I think will be good enough to wear as day clothes- they’re a long top and leggings, and look good enough for everyday wear. I’ll probably wear them as both

Because of the relapse my hair hadn’t been brushed for over 2 months when I finally became well enough to actually look at it, and it was a complete matted mess on the back of my head (probably from the jerking attacks I get). It had been in a plait but that wasn’t enough to stop it getting tangled. I did try to detangle it but it took me half an hour and a lot of payback just to get the tiniest strand out. When this happened in 2011 I swore I’d cut it all off. Johan wasn’t happy with the idea but as he wasn’t willing to detangle it (or help me prevent it from happening again) I had to accept it was time to cut it, especially as I couldn’t lie on my back as it was too painful. I ordered some hairdressing scissors and an awesome wig (Twilight Sparkle hair) and was hoping my carer would cut it for me, but after the scissors arrived I was asleep or not well enough when she was here, and then she’s been off sick for a bit.

In the end I decided enough was enough and hacked the lot off. I half filled a carrier bag with three big lumps of hair. I was so relieved when it was gone that I very happy. I asked my sister Becca to come and tidy it up for me and she did on Monday, and she also gave it a wash (which was much easier than it used to be and made me feel loads better). It is very short- about a centimetre in length, and really needs shaving to get it all even, but it’s loads better than it was and I really like it. I’m happy that I’ll be able to wear a wig when I want long hair (and I can have it purple again, after not being able to dye it for a few years) but it’s just so much better now, and my head feels a little lighter (though I still can’t hold my head up properly ). Johan is finding it difficult but hopefully he’ll get used to it soon.

Now I’m just doing what I can. Resting a lot, working on being able to sit up enough to use the commode (not there yet but I hope it won’t be too much longer). I still have my Christmas tree up as I missed quite a few days where I was too ill to look at it, and it’s pretty. I’m well enough now for occasional cuddles with Johan, but we have to be careful to not overdo it. I’m still far too sound and movement sensitive for television or World of Warcraft- I tried the latter on my laptop and felt terrible even though I was just planting things on my farm. I might be getting payback from Becca being over on Monday but won’t know until I’ve slept, sometime that I’ve mostly been doing a lot of (at least 12 hours at a time, sometimes 14 or even more). I’m grateful for what I can do but hate being completely bedbound, and we’re wondering how long it’ll take for me to recover from this relapse. Each time I’ve relapsed I’ve never got back to where I was beforehand, but we’re hoping I still have some improvement to go. I saw the dietician (not sure if I’ve mentioned that before yet) and she’s prescribing me some supplements as my food intake is very poor, but we need to speak to the GP to actually get them, and Johan isn’t doing brilliantly at the moment. I’ll get there, I just hope it’s sooner rather than later

Playing With Technology

Computers, Danni, Gaming, M.E., Mental Health, My Little Pony: Friendship is Magic, Penguins!, Physical Disability, Real Life, World of Warcraft 1 Response »

Dec 152012

I’m still not doing great. Still bedbound, still can’t be propped up, still ridiculously light and noise sensitive, needing sunglasses to use tablet and feeling incredibly ill if the lamp is turned on for more than a few seconds. Speech still hasn’t come back, making this the longest period of being non verbal that I can remember (before ME it usually lasted a few minutes to a few hours at most, and the more than a few minute episodes were extremely rare). Hardest is not being able to cope with Johan in the room with me for very long. I talk to him using Google Talk but even hand holds are limited.

It could be worse though. I can chew so can eat solid foods, and roll over independently. Both are exhausting so I have to be careful, but it means I can eat what I want within reason and adjust my own position when uncomfortable. And I can use my tablet, which means I’m able to communicate and have something to do, though I have to be careful with it as well as it’s so easy to overdo it.

Since I last blogged, I’ve been playing around with my tablet quite a bit. First of all I changed roms, from an Ice Cream Sandwich (4.0) one to a Jelly Bean (4.1) one. I think the last one was either Cyanogen Mod 10 or based on it, while this one is called Eos. The last time I tried upgrading to Jelly Bean I quickly reverted back due to the amount of bugs, but this time I’m very happy. It supports the same theme manager as Cyanogen Mod so I can use the same purple and black theme I had before (trying to find themes for tablets is frustrating) but to my delight this rom also allows me to change the status bar at the bottom from black to purple, something I’ve been wanting to do since I first got my tablet.

I’m liking Jelly Bean a lot. The more detailed notifications are awesome, and I’m still finding little improvements while playing with it. Some of them might be the rom rather than Jelly Bean itself, but still I’m enjoying it. I’m still getting occasional reboots and touchscreen issues, but I think those are more to do with how many times the tablet has been dropped than anything software related. I have insurance for accidental damage but it requires a phone call, changing all my details as I’ve moved and living without my tablet for a bit. I’m waiting until I’m out of this relapse before sending it for repair.

As well as updating my rom (well, Johan did the actual changing, I just did the backups, restoring and setting up) I’ve been playing around with apps on my tablet. First of all I got the My Little Pony game (also available on iOS). I was really enjoying it when I decided to change roms, and was even considering putting some real money into the game for some extras. I backed it up carefully, restored it back on the new rom and discovered it had reset the game, as the saves see based on the device ID. Gone were any thoughts of paying real money into the game, and I was considering just leaving it (it’s a clicking game like Farmville and similar on Facebook) when I discovered on Reddit it was possible to cheat and get lots of gems (the premium, pay for currency). Since gems would let me quickly catch up to where I was, and I had been enjoying the story even though the game wiping was bad and Gameloft massively overcharge for things bought with real money (it’s possible to get gems while playing, but it’s very slow and to get all the Mane 6 ponies would take 2 years, and a lot longer to complete the game’s storyline without paying) I decided to cheat. And it was fun and a great, very low spoon using distraction (not much movement, simple gameplay and very little thinking required).

I also swapped my main browser from ICS Browser+ to Chrome. There are some things that I preferred in ICS Browser+ and it was a bit faster loading most webpages, but Chrome helps by being more compatible with the sites I like to use, including my online banking one (I can actually log in now). Overall it’s a positive change, though if anyone knows how to access the history in Chrome for Android, please let me know. (Edit: found it. You type Chrome:history into the address bar and it’ll show it. I’ve now bookmarked it so I don’t lose it again.) I do like being able to access the websites I was using on my desktop and laptop very easily.

Today I decided to swap keyboards. I’d bought SlideIT for 10p last year, and since then I used it as my main keyboard. It is very pretty but unfortunately it no longer works as well as it did. Recent updates have made it pretty much unusable. My hands are very jerky at the moment and while previously it had been able to guess what I meant to type, recently it has been way out. On top of that, one of the recent updates broke the dictionary so it was no longer recognising common words. It could be fixed temporarily by resetting the dictionary but that meant losing all my custom words. It’s frustrating as I’d really liked it, and the themes are very pretty (there are several purple ones, plus Christmas ones and others I liked, and a theme editor) but as I use my tablet for communication when I can’t speak I need a reliable keyboard.

I’ve swapped back to Swype. It’s still in beta and has to be downloaded from the website, but for my use it’s much more accurate and has much better word prediction. This entire blog post has been written with it, and as I’m not having to correct every other word it’s a lot faster and easier. It’s ugly compared to SlideIT- the prettiest theme is a light one with magenta highlighting and trace pattern, which is still kinda ugly, but it is so much easier to use. I’m still making a few mistakes as I’m used to SlideIT and it has different quirks, but I’m sure I’ll get used to it. I’m still annoyed that SlideIT has gone so downhill though.

On a more minor note, WordPress has released version 3.5 and I’m liking it. They’ve improved the dashboard for use with touchscreens, and it is so much better for it. I’d previously only been able to blog on my tablet in Chrome using the full screen mode as once I’d written more than the normal sized text box could hold it would start playing up, but that’s fixed now. Accessing menus is a lot easier, and I even found a tick box for snow built in I’ve not even tried the new media upload section, which has apparently been completely revamped, but I’ll be trying that soon as I’m wanting to upload a photo later in my blog post.

I love technology. I’m so lucky to live in an age where I can stay in contact with the world from bed, while so ill. My tablet keeps me sane, and means I’m able to communicate and do what I can despite being very ill. I can read books (I read an awesome one called Realand the other day- I’m buying it for Sammie as it’s excellent and as it’s a children’s book was good for broken brains), I can talk to Johan and on Twitter, I can look at pictures of penguins and other stuff, I can do my Christmas shopping and help Johan with the finances.

There are times when I can’t use my tablet. Sometimes I’m paralysed or unable to move enough, or I’m too light sensitive to even look at the screen with my sunglasses on. For that reason we’ve started putting together a communication book for me that I can use when that’s the case. If I’m unable to look at it and indicate what I’m wanting to say myself, then Johan or someone else can read it out to me and I can indicate the correct response however I’m able. That might be through squeezing a hand, gesturing, blinking, or if I’m completely paralysed by breathing heavily. Our system is one for yes, two for no, three for I don’t know/maybe, four for something else. We’ll be including the instructions in it so if I’m I’m hospital or a care home again I’ll still be able to communicate. I got the idea from Mog’s talking book from Behind the Child. It’s a low tech solution but anything that enables communication is good. Johan is also trying to turn it into an Android app so that he has it always on his phone (in case we don’t have the paper version when we need it) but also so I can use it on my tablet when my cognitive abilities are too poor to manage typing, which also happens more frequently than is helpful.

If my speech doesn’t come back soon, or continues to be unreliable, I think we’ll be asking for a referral to a speech and language therapist. Our communication book will be good in the meantime though. I’m hoping they’ll be able to help me discover the best form of AAC for me, rather than me just guessing and cobbling together my own solutions (though I’m definitely grateful I can do that with Johan’s help). We also saw the dietician and she’s prescribing me some supplements as my food intake is so poor and my ability to manage solid food is unreliable. She’s also wanting to have the carers help with food preparation as some of the reason I’ve been eating so poorly the last year is Johan not always being able to feed me when I’m able to eat, due to his own disability and because of my sleep reversal. We’d been thinking about that anyway, so we’ll need to figure out how to ask social services for it. We need support to access support, which is kinda an issue.

Giles, looking like he’s plotting

Unfortunately things haven’t been going brilliant for me. Last week my gorgeous cat Giles was put to sleep. Vicky and I had adopted him when we were living together, and though he’d stayed with Vicky rather than me (I was uncertain whether I’d be able to look after him properly and Johan has a very severe cat allergy and values breathing) I still loved him very much. He was an older cat when we got him, FIV positive so needed to be an indoor cat, but he was the right choice for us. He was a rather laid back cat, but he adored food, often finding ways to get extra feedings, including from our next door neighbours at times. He also wanted our human food, especially pizza. I won’t forget him waking me up at 5am demanding food by jumping on my bed and meowing.

In the last few years he’d had some health issues. Problems with his eyes meant he went blind, but he still enjoyed his food and showed he wanted to be around. Last week though he started having more issues, was in pain and no longer had the same interest in food. The kindest thing was to let him go, but it was hard for Vicky, her parents and for me. I’ve been pretty upset since, though trying not to make me any more ill.

A few days ago I also got news that Glamourpuss (RL name Trevor), one of my guild friends in World of Warcraft, had lost his fight with cancer. Although we weren’t best friends, I’d spent many a time playing and chatting with him, and it’s hard to believe he won’t be logging in again. He was an awesome member of the guild, and I know I’m not going to be the only one who misses him.

I’ve also not been coping very well with this relapse. The pain has been unbearable for weeks and it’s only because I know hospital will make me worse overall that I’ve not gone in for painkillers. I even spent some time thinking of if I could get something from the local drug dealer as I was feeling that desperate. I’m not going down the illegal drug route (I’m bedbound, unable to speak, and the only person I know who does drugs is the guy upstairs and I’ve only heard him talking about cocaine, which isn’t going to help. Also I don’t want to be funding crime and would rather get my drugs from a source that’s reliable, but I sympathise a lot with those who go down that route) but it’s scary that I was considering it. Johan and I have come up with a plan. My GP is next in on Tuesday, and he’ll speak with her then to see if she can help. If I need it sorting earlier, we’ll contact another GP at the surgery or out of hours and get help that way. A+E isn’t an option as I’m too ill to get there and cope with the lights, sounds and things. Knowing it’s going to be sorted is making it easier to cope with, though it’s still hard.

We’ve bought a small Christmas tree for my room. It’s purple tinsel, and we’re going to put it on a box in the corner so I can see it. It’ll take a few days but it’s something to look forward to. Johan also got some decorations for my room. I’ve been having some of the chocolates from my advent calendar, though not every day due to feeling too ill and forgetting. It has penguins on it and my name. Johan also got mince pies and other goodies from French Oven, one of our favourite shops in Grainger market. People have also been far too nice to me and have been sending me cards, presents and linking me to pictures of penguins, which has cheered me up a lot while I’ve been feeling so poorly. I’m very lucky to have Johan and my friends.

I still have Christmas shopping to do. I’ve got to get presents for Sammie for Christmas and her birthday, and get some goodies in so we have a nice Christmas. Johan was feeling overwhelmed by the thought of having to cook Christmas dinner so I’ve told him we’re having a takeaway that day. It can be our tradition I’ve bought a present for my Spoonie Secret Santa recipient but need to get it wrapped and posted next week (I think I’ll need Johan to help there). I was wanting to get and send presents and cards to my friends and those who have been so nice to me, but I’m too ill to do so. As we’re waiting to hear about my DLA (runs out next month, got confirmation they’ve received the form but nothing else) we can’t go too mad but I have planned to make sure we can eat and pay bills for a bit if needed. I’m not allowed to worry about it until after Christmas unless they ask me to have a medical beforehand.

This blog post ended up a lot longer than I was expecting, and took a couple of days to write. I’m not used to stopping in the middle of blog posts to sleep and rest It’s been a tough week and I’m still very poorly, but I”ve got my friends, my family, penguins and God to keep me going. It helps.

What I’m Grateful For

Computers, Danni, Gaming, M.E., NaBloPoMo, Penguins!, Physical Disability, Real Life, World of Warcraft Comments Off

Nov 212012

Yesterday I blogged about the little things that I miss because of my M.E. Today I’m wanting to blog about the things I’m grateful for, that improve my life and make it worth living.

First there’s Johan. A wonderful man who married me despite my ill health, and now spends most of his time looking after me. He feeds me, gives me my medication, helps me with toileting, wipes my bottom for me, lifts me into my wheelchair and does lots of other stuff that aren’t part of a normal husband’s job description. He also entertains me, cuddles me, holds my hand, makes me comfortable, and loves me. I love him so much and I don’t know what I’d do without him.

My daughter Sammie. Though I’m too ill to see her at the moment, knowing she loves me almost as much as I love her keeps me going. It’s hard to believe she’s almost nine years old. I’m also grateful that her grandparents are doing such a good job of looking after her while I’m unable to.

My friends. I am so lucky to have so many good friends. Some of them I met in person, others online, but they are there for me no matter what, and I care about all of them deeply. Some of them I wouldn’t have met if I hadn’t got M.E, so it’s about the only good thing the illness has done for me. No matter how we met, I wouldn’t go without them and I love them to pieces.

My tablet. An Asus Eee Pad Transformer, getting this one piece of technology has improved my quality of life so much. Even when I’m very ill, I can normally manage using it to look at Twitter, check my emails, communicate with people and do other things on it. I’m currently writing this blog post on it using the keyboard dock. When I’m lying on my side then I can still type using the on screen keyboard, which is big enough that I don’t make too many mistakes. When I’m unable to speak it becomes my voice, so it’s vital for my safety and comfort. I might have needed a loan to get it, but it was worth every penny.

My wheelchair. I can’t remember what model she is, but she tilts, reclines, has awesome suspension and is supportive. Without her I’d be completely bedbound as she enables me to get out of bed without needing to sit up too much. I’m too tall for her but with pillows we manage. If I’m not in bed, I’ll be in my wheelchair.

My computer. When I’m well enough to go into the living room in my wheelchair, I normally go on my computer. Her name is Matilda and I mostly use her to play games such as World of Warcraft and SimCity Social, but she also lets me do my shopping, check emails, watch videos, and browse the internet, often at the same time as playing a game. I’ve got two monitors set up and I’ve arranged it so my keyboard and mouse are easy to use while I’m in my chair.

World of Warcraft. This game is the best distraction I have from how ill I am and how much pain I’m in. In the game, I’m a Night Elf Priestess, who specialises in discipline healing. When I’m not keeping people alive, I go shadow so that I can kill the bad guys. If I don’t want to do that, then I tend to my farm or play pet battles with my penguins. It’s brilliant escapism, and I have the support of an awesome guild, and I consider quite a few of the members my friends.

Casual games. When I don’t have the concentration for something like World of Warcraft, then casual games like SimCity Social or Bejewelled Blitz on Facebook, and Game Dev Story or Crayon Physics Deluxe on my tablet keep me sane. I might not be any good at playing them, but they are a lot of fun and make me happy.

My laptop. When I’m unable to go into the living room, and I need access to something more powerful than my tablet, then I go on my laptop, Annika. I’ve currently got her running Windows 8 which works loads better than Vista did on her. My main use is playing Facebook games in bed, but I can do other things like shopping, reading blog posts, and she’s great for watching things on Netflix in bed.

My bed. Since I spend the majority of my time in here, I’m very grateful to have a comfortable bed. Having a double bed means I no longer fall out, and there’s plenty of room for pillows to keep me in place. There’s also room for Johan to lie down next to me, so we can have some contact even when I’m not very well. I have a memory foam topper and now a sheepskin and they help keep me comfy.

Tramadol. This painkiller is what stops me from screaming. It can’t get me anywhere close to pain free, but it does reduce my pain down to a level where I can cope with it and use other techniques to distract myself from it. I’m not particularly fond of the dopiness it causes when I have to take two, but it’s preferable to the pain I have when I don’t take them.

Doctors who listen. I’m so lucky to have a GP who listens to me and wants to help me. I’m not the easiest patient to treat and she admits she doesn’t know much about severe M.E, but she’s willing to learn. I’ve been really lucky that I’ve had no actively hostile doctors, and though I’ve seen one GP that thought I should stop using my wheelchair I’m lucky that I could see someone else instead, who is more understanding.

The CFS Clinic. Run by a physiotherapist, a psychologist (currently on maternity leave) and an OT, they are supporting me and are trying to help me get better. They even visit me at home, which is so important given that I’m mostly bedbound. After realising that I’m no way well enough for GAT, instead of pushing me or discharging me they are giving me advice on how to manage my illness, and work with me to find solutions to my problems. They are big fans of getting enough rest, but understand that I do need to do some things that are fun as well. They have written a very supportive letter to help my DLA claim. We might disagree on the name of my illness but when it comes to how they’re working with me, I can’t fault them.

My penguins. I don’t know what I’d do without my penguins. Both Penguin and Penelope spend all their time with me, and can be heated in the microwave so also help me loads with my pain. They make me happy, even if they get up to mischief sometimes. Purple Penguin also likes cheering me up, as does the rest of my collection.

The things I can manage. I’m so grateful that most of the time I can still eat, drink, roll over, type, communicate, be washed, can have my pyjamas changed, can take my medicines, and can spend most of my time on my tablet. There are a lot of things I can’t do, but there are still things I can and I’m so grateful for them.

Disability benefits. I’m very grateful that I live in a country that supports me while I can’t work, and gives me enough money to live off. This is under threat, and it scares me, but for now I know I can pay my bills, heat my flat, eat as well as my illness allows, and have a decent quality of life. Being able to concentrate on getting better so I will be able to work in the future is important, and it’s scary that it’s disappearing.

My faith. Praying to God helps me so much, and my belief in Him keeps me going. I know He understands when I’m struggling and He is able to comfort me. Although I miss collective worship, I know He doesn’t mind and I hope that I can be a good person.

There are probably other things I am grateful for that I’ve forgotten to put here. I’m having a bad day (the upstairs neighbours having their boiler replaced has made me ill) but I’m hoping I’ll be back to normal soon. I’m very tired now as I had to take an anti nausea tablet, but I hope everyone takes care and is as well as they can be.

Today

Autism, Computers, Danni, Gaming, M.E., NaBloPoMo, Penguins!, Physical Disability, Real Life, World of Warcraft 2 Responses »

Nov 192012

(All times are approximate.)

9.30am- Woke up to the most horrendous metal on metal clanging noise. Body screaming at me, feeling extremely nauseous and deathly ill. Not the nicest way to wake up. Johan comes in, gives me painkillers and anti nausea tablet and heats up penguins for me. I put ear defenders and sunglasses on, Johan puts curtain up over blind to block out more light.

10.00am- Morning carer arrives. Feel far too ill to have any personal care done, there are no dishes and there’s no way I could cope with the washing machine. Carer tells me to feel better and signs the book and leaves. Not long after, drilling accompanies the metal clanging noises.

10.30am- Anti nausea tablet kicks in so I stop feeling like I’m going to throw up. Go on tablet with sunglasses on to distract myself from the noise and how ill I’m feeling. Go on twitter for a bit. Noise continues.

11.50am- The sedative effect of the anti nausea tablet kicks in. Swap sunglasses for eye mask, and fall asleep. Still drilling, banging and metal clanging noise.

Some time later- Wake up to pain from ear defenders (I sleep on my side and they’re not the most comfortable things to wear, though using my neck cushion around them helps). Notice noise has stopped so take them off. Fall asleep again.

At some point during this time Johan goes to Newcastle, buys Munchkin and some dice, and comes back again. I don’t notice as I’m asleep.

6pm- Wake up. Feel drugged up but not as ill. Johan comes into bedroom and is very excited about dice and Munchkin. Tells me he wants to play it with me some time. I agree. I go on tablet and go on Twitter again, with normal glasses as not as light sensitive any more. Johan gives me painkillers and heats up penguins for me.

7.00pm- Feel a bit peckish, so get some crackers from my snack drawer and Johan brings me some cheese. They are nommy.

7.30pm- Still feeling really drugged up and drowsy but pain is bearable. Decide to go into living room as don’t know if the morning will cause me to relapse and want to get stuff done. Johan helps me into my wheelchair, tilts it back, sorts out my pillows, and pushes me into the living room. Go on computer and play games.

8.30pm- Evening carer arrives. Language processing is all used up from chatting to Johan earlier, but know that body is too delicate to manage any personal care. Johan takes book out for evening carer to sign. I’m in World of Warcraft and wanting to get my dailies done as I can do them almost on autopilot now.

11.10pm (now)- Still on computer, writing this blog post. I feel okayish so long as I don’t move. Ability to chat is broken, but can type randomly okay. Will be going back to bed at some point. Still feel very drugged up but could be worse. I’m hoping that we did enough this morning that I don’t relapse, as too much noise is my main relapse trigger. Won’t find out for a day or two, so am doing preparation work in case I do relapse.

And that is why I’ve not written a proper blog post today.

Acceptance

Autism, Danni, Gaming, Important Stuff, M.E., Mental Health, NaBloPoMo, Penguins!, Physical Disability, Real Life, World of Warcraft 3 Responses »

Nov 132012

Guess who forgot not eating for a day and a half would also cause pain? Yeah. After a really restless night, I had some food this morning- cheese and ham and crackers. And it was fine, no pain. Yay! Also had a couple of Liquorice Allsorts and a tiny bag of mini jazzles (white chocolate discs with hundreds and thousands on them).

I was feeling a bit better so I went into the living room, and played some World of Warcraft. Did Tillers, August Celestials and Shado-Pan dailies. Also did the first half of LFR (looking for raid) which went well and was fun. No wipes, unlike Johan’s attempt on his Monk about half an hour later

Had some macaroni cheese (one of my favourite foods) for lunch then was going to start on Klaxxi dailies, when the pain started again. It feels just like gallstone pain- just under my right rib, radiating outwards up towards my shoulder, and towards the centre of my tummy. I’d already had 2 tramadol (being on computer gives more pain than lying in bed, but it’s worth it) so it was just heating penguins. Heat helps, but not as much as I really need. It’s not as bad as the worst of the relapse pain, but it’s still really intense and very much not fun.

What I eat doesn’t matter. I’ve been fine with chocolate and it’s been set off with the same chocolate. I’ve had it for just eating an apple. I’ve had it from rice and chicken. I’ve had it from yoghurt. It seems to be luck whether I get it or not after eating, and most times I’m not lucky. It was the same when I had gallstones when I was 18, and I lost a lot of weight before getting my gallbladder removed (when I went to A+E with the pain the doctors asked Sammie’s granddad if I was anorexic).

I need to eat, as not eating equals death and I don’t want that. I’m not in relapse, so I get hungry and eventually it hurts quite badly itself. Tomorrow I’m going to try grazing to see if that works better (I can’t tonight as the pain is still really bad, though not quite as bad as it was when it first started). I also need to find out when my own GP is available so that I can talk to her, both about the short term and long term eating issues, as I’ve not been eating properly for over a year now and I need help to not lose weight and maybe start putting some back on again.

Anyway, none of that was what I was wanting to blog about today. I was wanting to write about acceptance.

Acceptance can be hard for me, especially with ME. I have a lot of limitations imposed by the illness, and it’s so tempting to ignore them and push through and do ALL THE THINGS!!!1! but then I get payback and maybe a relapse. I’m fiercely independent so asking and accepting help from other people is really difficult. Then there’s having to accept help from people I don’t know very well (or at all at times) which is even harder.

There are things I have accepted. I accepted using the wheelchair as I realised it enabled me to do more. I’ve accepted that sometimes I can’t talk, and that typing is an okay, if slow, substitute. I’ve accepted that I need to take painkillers to manage the pain, and that doing so actually means I have a better quality of life, rather than just saving them for when it gets really bad. I’ve accepted that I do need help in most areas of daily living, and that needing that help doesn’t make me less of an adult or a person.

I’m struggling to accept I have severe ME. When I say that to Johan he tells me to use logic. When I’m in relapse it’s easy, as at that point I’m obviously severely ill, and feel it. It’s during the slightly better times that it’s hard to accept that how ill I am puts me in that category. I’m unable to walk, but earlier this year I was able to go out in my wheelchair to Newcastle and the MetroCentre, and I went to the prom. I’m only bed bound most of the time, not all of it. I’m able to play World of Warcraft. I can watch ponies. Sometimes I can even manage a fork or spoon. These feel like really massive things to me, but then I go look at the criteria and I’m almost at the bottom. There just seems to be a giant gulf between what I can do normally and what I can do during a relapse (which is pretty much nothing other than breathe sometimes).

I feel very lucky that I’m able to do so much, even if to other people it doesn’t seem that much at all. It’s hard to accept I’m as disabled as I am. I have accepted that I’m probably looking at years to get better rather than months, but I’m struggling to accept that I’ve not really started the getting better yet as even this year I’ve declined further, though at a slower rate than before.

It took a while for me to accept I was autistic, and that some of the things I’d originally put down to being stupid or lazy were actually caused by how my brain works. It’s gotten easier over the last few years, and now I’m trying to help Johan to accept the same things about himself. Things like struggling to tidy up being caused by executive functioning problems, taking certain things literally that weren’t intended that way and the reactions I got from that, even down to accepting that flapping was okay to do (I used to grab my hand if I caught myself doing it). Interface helped quite a lot with that, as did talking to other autistic adults.

I’ve accepted that it’s okay to be me. That one was probably the most important, and it’s taken me a long time to get to that point. I used to believe that I wasn’t good enough, I was too lazy, too stupid, too attention seeking, that I must be a liar because other people couldn’t see what I was experiencing. I now know that none of that is true- I may have times where I’m bit of all of them (though I try and keep lying to a minimum and most of it is white lies or lying by omission for what I feel are good reasons) but overall I’m not a bad person. I have my faults and I want to work on them, and I’ll never be perfect, but that’s okay.

I’ve also accepted that people genuinely like and even love me. When I was depressed I believed I was completely unlike-able (and evil, and ) and that people were only pretending to like me, or that I was deceiving them and that if they knew the real me they would hate me. Depression is evil as it changes the way you perceive the world so that you can see no good, like the glass shards in The Snow Queen. After I recovered it took a while for me to see and understand how it had lied to me, and learn that it wasn’t true. I still get moments where I’ll have those thoughts and beliefs, but they’re now short lived and easy to deal with, unlike when I was depressed.

I still have a lot of work to do on acceptance, but I’ve already come a long way from where I was a few years ago. Discovering I am autistic and recovering from depression (which are linked) helped a lot. Johan and my friends did a lot too, often by just being there for me and being themselves. I have some amazing friends and family, and that makes me feel very happy and lucky.

Being Ill is Hard Work

Autism, Danni, Gaming, Important Stuff, M.E., NaBloPoMo, Penguins!, Physical Disability, Real Life, World of Warcraft 3 Responses »

Nov 102012

Trigger warning: talking about eating, bodily fluids and other areas of being ill

Living with a chronic illness is hard work, and exhausting. Unlike an acute illness, where in most cases you can take time out from normal life and spend time just recovering, with a chronic illness you have to try and live life around the illness.

With M.E overexertion causes payback, which is highly unpleasant (increase in symptoms such as pain, nausea and brain fog, and for me it can cause paralysis, extra spasms and severe light and noise sensitivity). Trying to balance between doing as much as possible, to enjoy life as far as I can, without it tipping into doing too much is a delicate balance, and I don’t always get it right. A common technique used by patients with M.E is pacing, which requires figuring out how much activity you can do in a day and how much rest you need. Even trying to monitor my rest and activity levels was doing too much for me, so I can’t do proper pacing. Instead I listen to my body, which is hard as poor body awareness is common in autism and affects me, but I try.

Most of the time I’m not actively thinking about being ill or trying to get better. Distracting myself from the symptoms and the illness is very important to me, and finding ways I can do that without overdoing it is worth the effort. When I’m able to get into the living room in my wheelchair and I can manage with sensory input okay, playing World of Warcraft is my go-to distraction, as the skills it requires are easy for me, I can find things to do in game even when very brain foggy, and I like being able to melt faces or heal people, even if only in game. When I’m stuck in bed but not really ill (for me) then I use my laptop to go on Facebook or maybe watch some easy TV shows on Netflix. When I’m really ill, then my penguins are often my only distraction, along with the occasional glimpses at Twitter on my tablet. Those are hard times.

There’s lots of practical things that being ill makes more difficult. I can’t walk or mobilise independently at all, other than rolling in bed (and even that disappears when I relapse). Sitting up for more than a couple of minutes is a bad idea, which makes lots of things difficult. I can’t make it to the toilet most of the time and it’s not supportive enough for me, so I try and use a commode next to my bed. Each time, I have to figure out if I’m well enough to use it, if I’m well enough to transfer independently or not, if I’m well enough to manage wiping and my clothing. As I’m fiercely independent and don’t like asking for help, I sometimes get this wrong. If I can’t transfer independently, then I fall. If I can’t sit up long enough, I faint. In both cases Johan needs to pick me up and get me back into bed, and being hauled around is quite painful as I can’t help much (or at all if I’m unconscious).

The alternative to the commode is the bedpan. There are downsides to that as well. I need Johan to fetch it for me, and help me get on it. I find it harder to use than the commode, so sometimes can be on it a very long time. As I have no strength to hold myself up, I normally end up sitting in my own waste in it, and need cleaning up by Johan afterwards. It’s exhausting, painful and embarrassing, but peeing isn’t optional (and if I can’t pee, that causes its own problems, like possibly needing to go into hospital).

Eating while ill is also more difficult. I’m constantly nauseous, so I have to work out whether I’m able to eat at all, if I can what foods I can manage, what I fancy eating, whether I can chew properly, how well I can swallow. At the moment eating also causes severe tummy pain (feels like gallstone attacks but my gallbladder was removed 9 years ago so it’s probably not that) so I have to consider how calorie dense it is, as I won’t be able to manage much. Then I have to consider whether I can manage a spoon or fork, whether I can manage finger food, or whether I need Johan to feed me. Lots of thought has to go into the simplest of things. I do have anti-nausea tablets but they make me sleep, so I have to decide when it’s worth taking them or not.

That’s just a couple of areas where being ill make things harder. The planning that needs to go into the smallest things is tiring, and the cost of that has to be taken into account before even planning. A trip out to the shop requires about half an hour of preparation just to get out the door, due to the amount of stuff I need, sorting the wheelchair, helping me with outdoor clothing, and then getting the wheelchair out of the flat. Trips out are infrequent (and not happening at all at the moment) as they require lots of energy and brain power to plan, something which I’m rather lacking right now.

The consequences of not taking the illness into account and working around it are horrendous. Either payback, or if it’s been particularly bad or long lasting, a relapse. I’ve yet to fully recover from any relapse- every one has resulted in a loss of functioning that I haven’t got back. My M.E. was progressive anyway until this year, where it seemed to stabilise a bit apart from the relapses. A relapse is living hell- pain levels that are higher than I could have imagined beforehand (I’ve given birth and had gallstones), complete intolerance to light, sound, and often touch, often being unable to speak, and at the worst times completely paralysed, unable to communicate and hallucinating due to the pain. Some M.E patients are like that all the time, and I pray that they get some relief as I struggled with it for even a few weeks.

Of course, me being this ill and disabled means that Johan has to look after me, so a lot of the hard work goes onto him. I have to rely on him to manage my medication as my brain fog means it’s dangerous (I can’t remember if I’ve taken them or not, so am at risk of taking them again), plus I often can’t hold the tablets so he has to put them in my mouth for me. He has to deal with my toileting needs, no matter how I’m doing it. He’s the one who organises my food when we’ve figured out what I’m going to attempt to eat, who reminds me that I have anti-nausea tablets so I can consider taking them. He helps sorts my pillows and quilt out so I’m as comfortable as possible. He heats up my penguins for me to help with the pain. He holds my hand when I can’t cope with hugs. He spends time just sitting with me when I need company but can’t manage conversation. He repeats things multiple times because I lose track of what he’s saying. He contacts the doctors and everyone for me when I need them. He’s on call 24 hours a day, 7 days a week as neither of us can predict when I’ll need something. It’s as hard for him as it is for me.

Sexual Identity

Danni, Gaming, Important Stuff, NaBloPoMo, Real Life, World of Warcraft 12 Responses »

Nov 082012

I’ve known since I was 15 (when I first started experiencing sexual feelings) that I am bisexual. I’m attracted to females just as much as males. (I’m possibly pansexual, but as I’ve yet to knowingly meet someone who identifies as something other than male or female and be attracted to them, I can’t be certain yet.) This seemed perfectly normal to me, even though I was aware that hetrosexuality was the most prevelant. All my partners have been male, but that is mostly due to not knowing how to find a female partner (all the females I’ve been attracted to have been hetrosexual, taken or both) and I know I’m happy being monogamous so when I’ve been with a partner I’ve not been looking. Now of course I’m married to Johan.

I’m aware that most people will think I’m straight, as my bisexuality is not something I go talking about much and I have a male partner (Johan is straight). It’s not that I’m ashamed of it, it’s just not something that tends to come up in conversation. I’m also aware that I tend to think people are bisexual by default, unless told otherwise. I think that’s because I use myself as a starting point and think most people are like me, even though that’s not the case.

I don’t understand homophobia. Disliking people (or worse) because of who they’re attracted to just doesn’t make any sense to me. I know that I was probably born bi (I didn’t experience any sexual attraction before I was 15 but I do know I slightly preferred looking at images of women than men before then, which is still the case today) and hating people for who they are just seems wrong to me. This is especially the case as I’m a Christian, where the most important message I know of is to love your neighbour, and there’s no exception there for people different to you. I also dislike that many Christian churches are against gay rights (this was a major reason why I did not convert to Catholicism).

I’ve not been active in the LGBT community, though I am hoping to get more involved when I’m doing better. That I’ve only been able to marry Johan because he’s male and I’m female is wrong (and although civil partnerships are better than nothing, it’s not the same as marriage and can cause major issues if a transgender person changes their sex). That people are persecuted and even killed for something they can’t help is very wrong.

I’ve probably avoided any bullying or similar over my sexuality only because it’s not well known, especially when I was younger. I’ve noticed that insults based on sexuality are less prevalent here than in America (especially noticeable when playing World of Warcraft- you can’t spend more than a couple of minutes in trade chat on the US realms without some insults based on sexuality being thrown around, whereas on the EU realms it’s very rare). It upsets me that people use sexuality to insult people and to bully people.

I feel marriage should be available to any consenting adults. I don’t even think it should necessarily be restricted to two adults. If all parties are happy and give consent, then they should be able to marry. I think it will take a lot longer to open marriage up to more than two people, and possibly there are less people who are wanting it (though I could be wrong on that) but I’m hoping that marriage will eventually be available to all who want it. I also hope that the institutional homophobia that occurs in religions and other places will be seen as unacceptable and given a lot less power in the future.

Being bisexual doesn’t make me any less of a person. It doesn’t make me any less of a Christian. That some people believe that makes me sad.

(I’ve not been doing very well today as I’m still having tummy issues and my brain fog is bad, so if this post makes no sense, is overly repetitive, or similar that is why. I’m happy to receive any corrections that are needed.)

Ouchy Tummy

Danni, Gaming, M.E., NaBloPoMo, Penguins!, Physical Disability, Real Life, World of Warcraft 2 Responses »

Nov 072012

Tummy is being extra ouchy at the moment. Yesterday I was stuck in bed but today I went into the living room and played WoW, and moaned while the realms were down for maintenance (and got grouchy and sad when it took longer than it was meant to, as I was in pain and wanted to play to distract myself).

Matilda (my desktop computer) had been freezing up and things but it seems to be fixed now. We think the SATA controller couldn’t handle 4 drives when one is a super fast SSD, as disconnecting one of the drives has helped. It did prompt me to sort out my WoW addons, which I’d been meaning to do for a while. Will need to go into an instance or scenario to see if it still plays random Mario music on boss fights though (I thought I’d removed the addon that did that ages ago but it still played afterwards).

Sleepy now as woke up late last night but I wanted to try and push my sleeping time back in an attempt to sort out my sleeping pattern, but it’s dark so can sleep now. Johan is going out to the Autism North East social tonight and he worries less if I’m sleeping, so now to try it. Penguins are helping a bit with my tummy pain as Johan heated them up for me

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