Author: Danni

The Purple Penguin! 31 year old autistic geek, living in bed with severe ME (myalgic encephalomyelitis). Likes gaming, purple and penguins.
Danni

Random Title Here

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

This isn’t the blog post I was wanting to publish today. I have one started but not finished on self worth. Unfortunately, typing is hurting my hands too much so it will have to wait until I’m doing a bit better, as today I’m doing worse than yesterday. When i signed up to NaBloPoMo I was hoping not to relapse during it. Oh well.

If you’re not already, you should go follow Johan on Twitter. His Twitter name is @JohnUK89. Also, he needs to blog more so if you can tell him to write a blog post, that would be cool. His blog is at http://jbrennand.co.uk. He claims he’s no good at it but I disagree.

Danni

Fuzziness

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

The world is very fuzzy to me now. Staying conscious is hard work, and I’m not very with it. Johan is having to do a lot of guesswork as my brain fog is worse and I forget what things are, and how to describe them. Luckily he is very good at guessing what I might mean.

According to someone important in the Tory party whose name I can’t remember right now (though I guess it could be any of them) I shouldn’t have a lifestyle while living on sickness benefits, and I should take risks to work. What happened to the most vunerable will be protected? I think they’re no longer even pretending to believe that now. I’m not sure what job they think I’ll be suited for. I’m typing this through a fog of exhaustion and blurry double vision, so please excuse any mistakes. When I was doing much better than I am now social services panicked when Johan went into hospital and put me in a care home, and I know that’s the plan if anything happens to Johan again. I’m not even well enough to work as a bed tester as I need Johan to roll me over to prevent bed sores, and the only bed I can test is my own.

Johan technically can work, but his job right now is looking after me, for which he gets a whole £30 added onto the income support for. I’m not currently well enough to calculate the full total of our benefits, but I’m pretty sure it’s lower than the costs of me being in a care home, which is what would happen if Johan had to get a job. He’s already on call 24 hours a day, 7 days a week. Maybe that Tory guy who thinks we’ve got too nice a lifestyle would like to swap with him? I’m sure Johan would love to stay in a big house with lots of free expenses and the possibility of 8 hours sleep at night without worrying about my health. The Tory guy can roll me over, help me onto and off the bedpan, wipe my bottom, know when I need what medications since I can’t help much with that, spoon feed me, and everything else that Johan does, for the same money we get. Any equipment either has to be agreed by equipment services (and may take months to arrive) or has to be bought from my DLA.

Danni need sleep now. Blog again tomorrow when conscious enough.

Danni

Body, Stop Trolling Me

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

I’m relapsing again. Back has come the hypersomnia, light, noise, smell and touch sensitivity, severe pain that the tramadol barely touches, struggling to be able to lift my head from the pillow, and I can’t roll over. Yesterday I blogged saying I was grateful that I could still roll over, and when I woke up I couldn’t. Last week the gallstone type pain disappeared just after my doctor had seen me and organised an ultrasound. A bit of consistency would be nice.

I do know the reason for this relapse. The noise at the beginning of the week as our upstairs neighbours were getting a new boiler was too much for my body to cope with. I was hoping that we’d done enough to avoid it making me ill but obviously not. What hasn’t helped is I’d not recovered from the previous relapse yet,

We know what to do during a relapse now. Johan will roll me over every few hours. I will be sleeping and resting lots. We’ll keep an eye on my pressure spots to make sure they don’t go beyond discolouration. I eat what I can when I can, and try not to worry too much about it. Johan gives me my medication as often as I’m allowed. If I stop drinking, urinating or the pain becomes completely unbearable we get help.

I’m scared. Every time I’ve relapsed I’ve lost some functioning. I don’t get back to the level I was before. I’ve already had to hand over so much responsibility to Johan he’s struggling. He needs someone to look after him and when I’m really ill, I can’t do it. I’m hoping this will just be a short blip and we can go back to normal soon. I have my friends and my penguins and Johan so I can get through this. I just need my body to stop trolling me (and for upstairs to stop making so much noise, as they’re currently arguing and banging on the floor/our ceiling).

Danni

What I’m Grateful For

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

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.

Danni

It’s the Little Things

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

There are lots of things that I want to do that my M.E prevents me from doing. I had to give up college (after getting an A the year before). Walking hasn’t happened for a long time. I want to go see Johan’s family in Yorkshire but I’m no way well enough to go that far. Going to see a film, or a play, or a comedian are all too much. The bigger things I can get over, but the littler things, they’re harder.

I really want to wash my hands in a sink. The last time I managed it was when I was in a disabled toilet, so probably August. I can’t get to the one in my bathroom. I’ve been using baby wipes, and although they’re okay in the short term I want to use soap, hot water and a towel.

I want to use a proper toilet. I can’t use ours as I fall off. Even using the commode is dangerous as I faint if I sit up too long, but it’s preferable to the alternative, which is using a bed pan. Using a toilet with a flush that doesn’t need cleaning as often would be wonderful.

I want a bath, or a shower. Baths are wonderful, they are relaxing and they are great for pain relief without drugs. I like adding bubbles. The last time I had a bath was January or February. We don’t have a bath in our new flat, but I can’t use the shower at the moment as we don’t have a shower seat. We tried using the bath lift instead but it didn’t work that great and  is too dangerous to repeat. That was a few months ago and was the last time I was able to have more than a wash in bed.

I want to go out. Before the last relapse I was managing to go out once a week, to the library or into Newcastle to look around the shops. I went on the bus and the Metro and it was awesome. I got to see the bridges over the Tyne, could people watch, and eat out. It was awesome. I’ve not been well enough since then, which was in August.

I want to wear jeans. Jeans go with pretty much everything, and they look good. I can wear trainers or high heels and they go. And the texture of them is completely unbearable, and the pockets and sticky out bits dig in when sitting in my wheelchair.

I want to see my friends. I’m too ill to go out to see them, and I’m also too ill to have them visit most of the time. Even when I’m well enough, most of them are too far away. In the last few months, the only people I’ve seen are Johan, my carers and my doctors.

I want to be able to watch TV shows again. I have loads of telly shows I like- Doctor Who, NCIS, House, Glee, Law and Order SVU. I’m behind on all of them, some of them now by two seasons, as I’m just not well enough to watch them. I can’t follow plots and I get very confuzzled. I can watch My Little Pony: Friendship is Magic, but that is with difficulty and I need to rest to recover afterwards.

I want to be able to go into the kitchen and choose something to eat for dinner. To go into the kitchen, I need to be well enough to get into my wheelchair, and Johan has to push me. That could be doable, but then I can’t see into the cupboards or the fridge or freezer because they’re too high or too low or I’m too reclined. The room isn’t really designed for a wheelchair user, and so I have to rely on Johan to tell me what we’ve got in to decide what to eat.

I want to be able to sit upright without fainting. That would mean so much to me. It would mean I could use a normal wheelchair, instead of needing a tilt in space one. Getting into the kitchen and looking for food would be at least partially doable. I’d probably be able to manage using the normal toilet. I might even be able to wash somewhere that isn’t my bed, like the bathroom. I could manage with a normal shower seat. I could probably even get dressed without lying down, which would make it a lot easier.

I want to have a day without any nausea. Asking for a day without pain is far too much, but having an entire day without nausea would mean I’d be able to eat better, and would be able to cope with everything more. I do have anti nausea tablets that work, but they also put me to sleep so I’m reluctant to take them when I can just about manage without.

I want to be able to have cereal with milk and eat it by myself. That would mean sitting up to eat it (I mostly eat in bed, propped up a little bit, because if I sit up even in my tilted and reclined wheelchair and try and chew at the same time it’s too much), being able to hold and use a spoon, and not spilling it everywhere. Though I can sometimes manage using a lightweight plastic spoon or fork for a few mouthfuls, my hand then starts spasming so I need Johan to help me finish. With cereal there’s so much to go wrong that I just eat it dry with my fingers, but it would be nice to manage it properly some time.

I want to be able to take my medication by myself. At the moment Johan has to sort out and give me my medication. Due to the severity of my cognitive issues, it’s dangerous for me to manage it myself as I’d forget if I’ve taken it and might take too much (and since most of the time I have no idea what time it is even putting it in a box wouldn’t help). I struggle to hold the tablets or capsules and can only sometimes manage putting them in my mouth if Johan’s passed them to me. Other times he has to put them in my mouth for me because my hands are being too stupid or my vision is too blurred and I can’t figure out where my mouth is. Then I need help with the cup as it’s heavy. As for the liquid medication, there’s no way I’d be able to manage measuring and pouring it out safely.

I want a hot drink. A cup of tea or a hot chocolate would be lovely. Hot drinks are dangerous though- there’s a high risk of scalds. I do have a thermos I could try drinking from, but then the other problem is that Johan doesn’t feel able to make a hot chocolate or a cup of tea, so it just doesn’t happen. If I could get out then I’d be able to have one at a café or somewhere (like the one in the library).

As Johan pointed out when I told him what I was blogging about, most of these are big things to me as I can’t do them. To those without severe illness or disability though, these are quite small things. There are other things I could have added, like moving independently around the flat, and getting dressed by myself, but this list will do.

Some of these I may be able to do in the future. I’m hoping the OT will provide me with a suitable shower seat so that having a shower will be doable. I’m having an assessment for a power chair, and depending on how it works I might be able to go into the kitchen and even choose food. If my hands improve further then maybe I’ll get that bowl of cereal. I’m very grateful for all I am able to do- get out of bed occasionally, go on my computer, speak or type, get dressed some days, use my tablet to go on Twitter and communicate with the world. But sometimes it’s hard not to want to be able to do more.