Danni

Whoopsie, Backwards

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

Things went well in the care home until they didn’t. A couple of nights they didn’t check on me frequently enough, causing my pad to leak (I hate that, it makes me feel really uncomfortable and embarrassed, which I’m normally not about being incontinent). Then one night they pretty much forgot I existed. Well, the nurse knew I was there and gave me my medication, but she didn’t let the night staff know (they hadn’t been in since I’d gone in) so they left me for 7 hours. People on Twitter ended up calling the care home (thank you!) and they eventually sorted me out (after 2am), but by that point I was dehydrated, my hand were red, cold and numb from the window being open, and I was tired and still needed changing into my night clothes as I’d been out that day. The only reason I didn’t have a pad leak was because I was dehydrated. It was horrible.

I’ve not been as well since. I really wasn’t well enough for my chair to come home, but we did it anyway because I needed to. I was meant to see my consultant on the 16th June but that didn’t happen as though I was told to be ready by 12.30pm for a 3pm appointment, the ambulance to take me didn’t arrive at mine until 3.20pm (and my consultant is super busy so they couldn’t fit me in later). Apparently we should have told them the appointment was time sensitive. I thought all hospital appointments were?! In a way it was a good thing as I wasn’t well and I was dreading the travel.

My 28th birthday I mostly slept. When I was awake Johan got me a McDonalds as I really wanted one and he’d bought me some cupcakes from French Oven which were nice. I got some lovely cards and Vivacia Dreams sent me some awesome presents 😀 I am so lucky 🙂 Sammie also sang me happy birthday on Skype, which made me very happy.

Johan finally had his care assessment which said he has substantial care needs (same level as mine). He’s not too happy about it but hopefully they’ll provide the help he needs soon. They’re arguing over whether it should be learning disabilities or mental health who should cover him (as autism doesn’t fit either) but we don’t really mind so long as it happens.

We decided to get Sky Sports for a bit as we both like Cricket and Formula 1, and Johan is getting into football 😛 While sorting that out Johan managed to get us a discount and get us 152mbps broadband (though we somehow get 160mbps download- Virgin Media’s false advertising :P). He also ordered a SuperHub 2 which has (after a couple of days teething problems) fixed our wireless problems. We’ll have to wait to see if it’s fixed the router randomly breaking issue, though I think it probably has.

I also bought a Chromecast. I’ve been considering it for a while, and wanting to watch YouTube on my television without a couple of minute delay (how long it takes using the TiVo box) pushed me to get it. I’m really happy with it, as not only is watching YouTube videos really easy now, but I can also watch Twitch streams and play games on it. It’s also really easy to stream TV shows and films so I’ve watched a few more episodes of My Little Pony and I’m hoping to watch Brave soon.

I won tickets to the Durham Jets Twenty 20 match on the 4th July. I was hoping to be well enough to go myself (wishful thinking mostly) but when it became clear I wouldn’t be, we contacted NatWest (who I won them from) and got them transferred to Johan (who already has a season ticket, but yeah). My friend Sue wanted to go, so we gave her and her mum a ticket. Unfortunately the cricket never got started due to rain, but I did get to meet Sue which was awesome 😀 I’m hoping to see her again at some point, and my goal is to be well enough to go to the cricket next year.

Vicky also visited as she was back in the UK for a little bit from Palestine. It was really nice to see her, especially as last time she was here I wasn’t really well enough to talk to her. She brought with her a copy of the updated version of her book, Caged in Chaos, which I’d been intending to get for Johan (and will get on Kindle for myself when that’s updated because I currently can’t read print books)  and a gorgeous purple ring for me 😀

Otherwise I’ve mostly been Skyping with Sammie when I can and playing games with her, and having the odd medical visit (CFS team, who couldn’t do the transfer stuff because I wasn’t well enough; GP because of me drinking loads; district nurses due to bed sore on my ear) every so often. I’m resting loads, still getting the odd 16 hour sleep (not helpful for bed sore on ear), and hoping I start improving again soon. I am also slowly starting to accept I’m bendy, after Johan pointed out my arms bend backwards when I think they’re straight, and it looks like I meet the criteria for EDS with that and several other things. At some point I really need to list everything that may be relevant from my medical history (joint pain since I was kid, dismissed as growing pains for years; fainting as a teenager when stood up too long; stamina issues since childhood when walking; acid reflux since I was at least 5 years old; cuts and bruises taking months to heal; local anaesthetic not working; lots of other stuff) as what I thought was normal is becoming obvious that it wasn’t. Is hard though. It might not be EDS, but I want to find out as it’s genetic.

I’m hoping to fix my sleeping pattern at some point, as I’ve gone nocturnal again. Right now my biliary system is being annoying (gallstone-type pain) so I have to wait for that to calm down. Could be worse – I’m not screaming and distraction is working at least some of the time right now. Pain sucks.

I’m gonna improve at some point. Just a bit impatient for it to happen now 😉

Danni

Swish

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

I’m okay. Physically not great, but I’m coping. More explanation soon.

The world is weird. And good. Right now I can only access a tiny part of it, but I’m here and it knows. Speech and sounds lose meaning and become music in my head. Sometimes loud, scary and painful, but mostly gentle and pleasant.

I try and read on my tablet and the words bounce around and change shape and become something other than words. The things I can see in this darkened room gain colour and movement and dance. I let them, as it makes me know I’m here. I can still see them with my eyes closed.

I go back to the world of language and meaning when the room becomes brighter and I sense someone come in. The world I’m normally most comfortable in, the one I’ve had to learn it’s okay to leave sometimes. I used to only leave it when awake during overload, so found it scary. I know now that leaving words behind isn’t bad, especially as words take energy that is in limited supply. I need it to interact with people though, as I don’t know how to communicate without it.

I don’t know how to describe it properly, the world without words. I know others spend more time there, and are much more used to it. Many find it easier than words. I never used to, but now words don’t always make sense so I’m learning how to be without them again, like I know I must have before. Without overload it’s beautiful.

Danni

Super Sitting Success

Autism, Computers, Danni, Gaming, M.E., Minecraft, Physical Disability, Real Life

I’m hoping to post the photos I took to go with this post at some point, but I’m not at home right now so will be when I’ve got more cognitive spoons to do so (I think I’ve got them online, somewhere) 🙂

Stuff has happened. Lots of stuff. Bullet point time!

  • Payback from seeing my brother only lasted a couple of days. It’s been a lot shorter in general recently.
  • I saw the CFS team. They are going to help me with learning safer transfers next time they visit (after I’ve seen Dr Spickett).
  • I sat up independently on the edge of the bed! It was amazing and my heart didn’t start doing funky dances until after I was lying down for 30 minutes. It’s strange.
  • A couple of days after that, I had no dizziness. Dizziness has been a constant of my illness since the beginning. So I sat up again. And was fine. Then I decided to try standing, and after a couple of failed attempts managed it while wearing my green high heeled boots (I can’t put my left foot flat on the floor with my leg straight) and my zimmer frame.
  • Since I was standing and pretty steady with the help of the zimmer frame, I tried walking. And managed three steps! They were little steps, but I did it! Afterwards I took one step backwards and collapsed on my bed, but I walked!
  • I didn’t get any payback from that, though my dizziness did come back and hasn’t gone away again since (oh well).
  • I went to the local polling station in my wheelchair and voted. We’d forgotten to apply for a postal vote for me and it was a good thing in the end. I wasn’t really well enough but I managed it and wasn’t too bad afterwards 🙂
  • Had visit from Sammie. I’ve been playing lots of Minecraft with her and talking on Skype with her but it was amazing to see her. We had a grown up discussion about something important she needed to talk about with me, then we had awesome mum and daughter time with lots of cuddles 🙂
  • Had care plan review with someone from the care agency. Really overdid it during it (I could tell as I was struggling to answer questions from about halfway through). Got payback from that 🙁
  • Johan had his care assessment finally. I did most of the talking as Johan can’t talk about himself. That was also too much but the payback (which was still happening from the last visit) only lasted a couple more days, luckily.
  • Sammie made me a purple penguin house in Minecraft, and herself an ice palace (inspired by Frozen) with a jaguar. She’s much better at building in Minecraft than me 🙂
  • Our upstairs neighbour’s brother broke into their flat. It was horrible. I spoke to the police when it happened (during the middle of the night) then gave a statement to the police the next day. There was also repairs done. The noise made me worse than I had been for weeks for a few days and scared us.
  • Johan went to see the cricket a few times. I think he enjoyed it.
  • I bought a couple of new shinies. A new SSD for my laptop and a Kindle paperwhite to read on. Yay!
  • I’m now in a care home for just over a week. Came in yesterday and will be going home next Friday. This is so Johan can go to see his friends and family. It’s mostly good (though I still don’t agree with care homes).
  • I had a bath! It was amazing! First bath since I moved house 😀 I feel properly clean. My hair also looks like hair, according to Johan 😛

Tomorrow Johan goes to Glasgow the Leeds. I’ll be keeping in touch with him via Google Hangouts and Sammie via Skype. It’ll be the longest we’ve been apart since he moved in but it’ll be good for him (and I can do more thanks to the hoist and a bath!).

I’ve done so much in the last few weeks and I’m really happy 😀 Johan’s assessment result said he has substantial care needs and his provisional personal budget is similar to mine, which he’s finding hard to come to terms with but he needs the help. Hopefully it’ll make our lives a bit easier, as we’re hoping to join our care packages together so we can both get the help we need.

Danni

ME Awareness Day 2014

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

Danni on ME Awareness Day 2014Yesterday (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.

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
Danni outside in the sun with Penguin, Primrose and Poseidon