Danni

Monday 12th May, 2014 Danni

ME Awareness Day 2014

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

Yesterday (Monday) was ME Awareness Day. I had a couple of ideas of blog posts I wanted to write for the day, but my brother came over on Sunday and I spent too long chatting, which means I now have payback. I didn’t wake up until 5.20pm and spent most of the evening in a weird fuzzy state. I had been doing really well (last week I managed 2 hours in the living room with no worsening of symptoms) but I pushed too far Sunday and now I have to pay.

That’s the defining symptom of ME- a worsening of symptoms due to too much activity. What counts as too much depends on the person and the severity of their illness, and to make things complicated it can change from day to day, from hour to hour. The payback has various names (the most common I’ve seen being post exertional malaise or post exertional neuroimmune exhaustion) and the symptoms it causes are as varied as those of the illness itself.

My payback today consists of a worse than normal headache, pain behind my eyes, greater light, noise, smell and touch sensitivity, more pain (mostly muscle and joint pain, some nerve pain, other random pain I can’t really define), more muscle weakness, worsened coordination, worse nausea, difficulty swallowing, muscle spasms and the fuzziness I mentioned earlier. Compared to how I’ve been the last couple of weeks, it’s pretty bad, but before then this was pretty much my normal. I’m hoping with lots of rest I’ll get back to where I was.

If you want to find out more about ME, my previous blog posts about it from two years ago are linked at the top of my blog. There’s also the #MEAwarenessDay hashtag on Twitter. Jenny, Stroopwaffle on Twitter has tweeted about living with very severe ME for years. If you know any other good places please comment as I’m not sure when I’ll be up to finding them. It’s a sucky illness but hopefully there will be a cure found.

Friday 2nd May, 2014 Danni

Happy Flappy Purple Penguin!

Computers, Danni, Diablo 3, Gaming, M.E., Minecraft, Penguins!, Physical Disability, Real Life

Update post (so I don’t forget in a few weeks/months/years when I need to remember stuff :P)!

I played lots of Diablo 3. It is fun 🙂 I bought the Reaper of Souls expansion when it became obvious I was going to finish it 🙂 I have now finished the story (including expansion) and when I last played it I was level 56 on my wizard.
I’ve started playing Minecraft again, on the Autcraft servers. It’s nice to not have to worry about neurotypical social constructs, and though most of the players are younger than me they’re really cool.
I got obsessed with Classic Alice and even took part in a Hangout with the cast. That was fun but rather draining 🙂 I asked if they’d considered children’s books for future episodes, and now they are doing so 😀
Nutritionist came out to try and figure out my weight from my arm measurements. It looks like I’m no longer underweight. Yay! The Fortisips are working.
I managed to arrange Sammie’s Easter eggs for the first time in a few years. No feeling guilty when I find them under the bed 10 months later 😛
Good Friday was good. I had my hair washed. First hair wash of the year! Also had chish and fips for tea, which is a Danni tradition I like to keep 🙂
Easter Sunday I soaked the bed by catching the end of the Hydrant tube under me and pulling it off. Johan had not long been asleep and so was really groggy and really struggled to get me sorted. That was very much unfun.
Later on I watched the church service on the telly. That was good. There was Indian dancing during the prayers. Then my TiVo box rebooted so I couldn’t watch any more. That was not so good, but luckily the service had finished by then.
Got payback from the Hangout/hair wash/bed soak. Felt really ill for a couple of weeks. Even ended up throwing up which rarely happens now with the heavy duty anti emetics I’m on.
25th April was World Penguin Day. People sent lots of pictures of penguins for me and my waddle (apparently the agreed collective term on land- in the water they’re a raft). That made me happy 😀
30th April started feeling much stronger than normal. Watched UP. Got annoyed at the TiVo box restarting lots. Cried a bit. It was a good film 🙂 Later on had cuddles with Johan which made up for it 🙂 Started pestering Johan to let me go in wheelchair. He said see how I am in a couple of days because he was worried about payback from watching UP and cuddles. We also took my curtain down so I could see outside again 🙂
Yesterday was still feeling stronger, so had loads more cuddles with Johan. I also wrote the previous blog post (which was hard and emotional for me) and finished a 1024 piece jigsaw puzzle on my tablet that I’d started a few days earlier. The picture was of an Emperor penguin and it’s chick 🙂
Today to Johan’s surprise I was feeling even better than the last two days. I got dressed in the morning in a rainbow dress, pink penguin socks, rainbow headscarf and cream cardigan. I was plotting…
The new U shaped cushion I’d ordered for my bed arrived. I ordered it with a lilac cover this time. I’m keeping the old one (which is rather flat now) as a spare, and I’m just accepting I’ll need to get a new one every year or so.
I also received a tube director for my Hydrant. It’s a neoprene cover for the tube with a bendy wire in it so you can angle it where you need it. I’m hoping it’ll prevent any more bed soakings.
After the cushion arrived (yay for delivery tracking that lets you know when it’ll be coming to the hour!) it was time for my big adventure- going outside! Johan helped me get into the wheelchair (though I managed to get up to sitting by myself with the bed’s help) and once I was settled in it and the worst of the dizziness had passed he took me out. We went down the ramp and I saw a butterfly and then as I wasn’t feeling amazing with the movement we stayed halfway down the ramp and I watched the traffic for a while. It was amazing! The sun felt warm on my skin, the wind was cold and it smelt really fresh. I was still feeling not too bad when I came back in, as I didn’t want to push it. On the way back I was able to see a bird’s nest (I could see it from my window in bed but wasn’t sure if it was a nest or not). I can still open our flat door with my feet 😀 The transfer back into bed was harder than the transfer into my wheelchair and I felt rather nauseous for a bit. The way Johan dragged me onto the bed we ended up kinda tangled in each other and we converted it into more cuddles for a few minutes, then he sat in my wheelchair next to me so we could have handholds without him restricting where I could lie on the bed. I’ve had such a good day and I’m the happiest Purple Penguin 😀

Danni outside in the sun with Penguin, Primrose and Poseidon

Thursday 1st May, 2014Thursday 1st May, 2014 Danni

Blogging Against Disablism Day: Internalised Disablism

Autism, Blogging Against Disablism Day, Danni, Important Stuff, M.E., Mental Health, Physical Disability, Real Life

(This blog post is part of Blogging Against Disablism Day 2014. Is is hosted at http://tinyurl.com/BADday2014)

One of the hardest parts of disablism (or ableism) to deal with is how it invades your thoughts. All those insults and comments that have been said about or to me stick in my brain, and come out when my disabilities affect me. The thoughts that I’m not really disabled, that I’m just lazy or stupid or selfish or putting it on, things that have all been said to me by people aware of my disabilities.

I know logically that being disabled does not make me a bad person. Having impairments and needing help and support has no impact on my worth. Yet years of bullying, often based around my difficulties, mean I find it hard to accept sometimes. This isn’t helped by the current treatment of disabled and vulnerable people in the press, or how a lot of people talk about disabled people.

Recently on the news there was a story of a mother murdering her autistic son and then killing herself. Most of the articles were sympathetic to the mother, and went on about how difficult her son was to deal with. The fact a child was murdered because of who he was didn’t seem to matter. As an autistic person, it scares me, and it feeds into the thoughts that I’m not worth it. He deserved to live, and there is no justification for his murder.

Johan often tells me off for apologising when I ask him to help me. I can’t stop doing it though- years of being told I didn’t deserve it mean I feel guilty when asking for help, even though logically I know that I need it and Johan is quite happy to help me. I even tried to justify the neglect I suffered in the care homes for the same reason. If it had happened to anyone else I’d be outraged and want to do what I could to fix it, but because it was me and because I only deserved bad things because I’m not that ill/putting it on/it’s all in my head I felt guilty for even mentioning it.

Before my ME got bad there was no real external sign I was disabled, though I was odd enough to be called names/beaten up/literally trodden on. I was blamed for my difficulties, often by the people who should have been supporting me. The result was years of depression, and even that came with it’s own disablism. Though I’m no longer depressed, I still have times where I think I’m lesser because of my disabilities. I know I’m not the only disabled person who has this.

All people matter. Everyone should get the help they need, regardless of who they are. If someone can’t do something, that should be accepted and they shouldn’t be treated badly because of it. They also shouldn’t be denied the chance to do what they are capable of. No matter what people think, this is true. Now I just need to convince my brain of this.

Friday 18th April, 2014Friday 18th April, 2014 Danni

Hope

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

As I lie here in my bed, only moving one hand slightly to type on my tablet, I don’t feel completely horrendous. I’m nauseous, in pain, and random muscles are spasming, but I feel like I could get out of bed and into my wheelchair with help. As soon as I move (to roll over, or reach for something, or have my pad changed) I’m reminded why I’ve been in bed over a year with only a few short periods in my chair. Dizziness makes my vision more blurry. My heart does funky dances (races or beats in weird ways, while attempting to escape my chest). Breathing becomes hard. Pain shoots around my body. I get more spasms. I feel incredibly ill.

If I’m lucky the movement induced blehness eases off after a few minutes and I can breathe and think again. Using the bed to move me helps, so long as I don’t attempt to sit too high or too quickly. Most of the time it happens immediately so I know to stop as soon as I can, but other times it takes a few minutes so I’m fooled into thinking I’ve got away with it. It sucks, as it means I can’t move as much as I want to, and moving when I need to (remaining completely still risks bedsores and stuff) is horrible.

If I can I try and concentrate on anything but how I’m feeling when I move. If someone is in here, I’ll try and talk to them (if able to speak) or concentrate on them. When alone, I concentrate on the task and why I’m doing it (such as how my hip will feel better once I’m on my other side). I try and move as quickly as I’m able so I don’t get stuck, though I’m limited by my body in how quickly I can go now.

Hugs are the thing I miss most. Being touched is incredibly painful now, and can cause the same stuff as moving does. If it were just pain I could cope, I’m used to pain. But hugs are so overwhelming that they cause post exertional malaise, where I get worse symptoms and my body becomes weaker a day or two after the event. There are times where the emotional need for a hug makes it worth how ill it makes me, but since if I get much worse I become paralysed and unable to swallow it’s not something I can risk too often.

I’m grateful I’m not as ill as I could be. I have handholds with Johan as they don’t affect me as much. I can tolerate enough light and sound to be able to go on my computer and play games. I can concentrate enough to read and communicate. Most days I can manage something solid to eat. Overall, I’m slowly getting a bit stronger. I just need to remember not to push it to the point of relapse and pray for more little successes.

There are people with ME (and other conditions) who are more ill than me, who would love to be able to do what I can. Just as I’d love to be able to get into my wheelchair or have a hug without payback. I sometimes forget how ill I still am as I compare it to how I was at my worst: paralysed, unable to tolerate any input, and barely conscious. But I’m lucky as I have support and hope. The hoist should get me out of bed. A And I’m going to get better, somehow.

Sunday 6th April, 2014 Danni

Diablo 3

Autism, Computers, Danni, Diablo 3, Gaming, M.E., Physical Disability, Real Life, World of Warcraft

As part of the World of Warcraft Annual Pass a couple of years ago, I got a free copy of Diablo 3. I wasn’t really well enough to play it, but now that Johan was playing the expansion and he said they’d made it a bit easier I decided to give it a go.

I’ve made myself a Wizard. So far she mostly runs around in a bra and not much else firing arcane missiles at various evil beings (and bookcases which hold gold instead of books). I’m hoping eventually she’ll gain some clothes as it’s got to be a bit cold. The story is interesting and the gameplay is easy enough on Normal for even my foggy brain. I’ve yet to come close to dying, and this is with me going pretty much blind during a boss fight (lasted about a minute – I just pressed my mouse buttons and when my vision came back it was obvious the boss had died a bit before). It’s impossible to fall off ledges and stuff, and I’ve rebound all my attacks to my mouse (a Razer Naga with 12 buttons on the side) so I rarely have to use the keyboard. I’m having fun and maybe my character will wear some clothes when she’s higher level.

Last week I had a date night with Johan. We got a takeaway and watched Despicable Me. It was a really good film and I was glad to see it. Unfortunately I’ve had quite a bit of payback since then and overall I’m not doing great. I’m not terrible either (can still get on computer and play some games) but needing a lot of sleep and having to take more medication than I really like to cope. A bit sucky but it could be a lot worse and I’ve been watching a lot of kittehs which has kept me very happy 🙂

I’ve not been playing very much World of Warcraft recently, but when I have been in game I’ve been working on pet battles and getting the items from rares in Pandaria on Danni. Now I have decent gear (mostly from Ordos and from when I was still running flexi raids) the only ones I really struggle with are Jinyu and Pandaren at level 90/91, and both of them I can get down with a bit of luck with their casts (not healing with Pandaren, only one Torrent for Jinyu). I managed to get Glorious! not too long ago so now I’m only focusing on those with items I want (which is all of them that aren’t gear). Since a lot of it is just flying around looking for the rares it’s been quite relaxing.

One thing I’m happy about is the Battle.net launcher now lets me chat to people without being in a game 😀 I have a couple of friends I only talk to through Battle.net so being able to communicate with them even when I’m not able to be in WoW/Hearthstone/Diablo is awesome. Not that I’m actually using it much, but having the option is great. Yay for improvements!

The domperidone is still making me dopey. Because of this I’m now calling it dopeydone and it won’t get its name back until it stops making me so out of it. It’s helping a tiny bit with digestion (at least making my digestive system noisier) but not doing much for the nausea so I’m still needing cyclizine sometimes. The combination of dopeydone and cyclizine makes me really out of it and often sleep. Could be a lot worse though so I’m sticking with it for now in the hope the dopiness eases off at some point.

It’s currently Autism Awareness Month which I’m mostly ignoring. I did write a couple of tweets for Autism Awareness Day (2nd April) but otherwise I don’t plan on doing anything. I could have delayed my previous blog post until this month but meh 😛 I’ve been having a lot of fun discussing people who lack autism with Johan though, and how weird they are and what a tragedy it is to lack autism 😉

My sister Becca has been diagnosed with ME this week. It is not a surprise as such as she’s been ill for a while now, but still it’s sad as I don’t like her being ill. I’ve been lecturing her for a while to take it easy and stop pushing to do things, and she says she’ll actually do it now (she’s looked after me so knows what severe ME can be like). There’s definitely a genetic component to it, though interestingly Becca doesn’t have the hypermobility I have (nor can she touch her nose with her tongue, which everyone else can do). I’m going to try and support her as much as possible and hopefully she’ll learn from my mistakes and not become as ill as I am now. She told me she was bored, so I jokingly told her to start a blog. She actually did, and you can see it: waddlewddle.

Johan is currently defrosting the freezer. Turns out the fast freeze option has been on since we moved in, which would explain why the drawers had frozen solid. We’ve lost a bit of food but being able to use all the drawers again will be great and I did get an ice lolly which was nice 🙂 This coming week we’ll be doing a big shop to restock the freezer and I’m hoping to write an email to social services asking about the hoist. I’ve also got various things to buy so that will be interesting. Hopefully I’ll start feeling a bit better as well 🙂