Apr 182014
 

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.

Apr 062014
 

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 :D 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 :P 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 :)

Mar 282014
 

I woke up earlier this week having been dreaming about an argument/discussion I’d had on one of the ME groups on Facebook I’m a part of, and I’ve been meaning to blog about it for a while so now is a good time. Someone posted an image on there which was about invisible illnesses, and included autism in the list. I mentioned how calling autism an illness annoys me (it does) and it turned into an argument where vaccines cause autism, Andrew Wakefield is a hero and I don’t understand because I’m too high functioning.

I don’t understand autism functioning levels. The best explanation I’ve seen is that high functioning means your difficulties get ignored, and low functioning means your strengths get ignored. When it comes to defining it, no-one can give a definitive answer. Some say it’s based on speech, others on ability to perform self care tasks. others on supposed intelligence. When done over the internet, people who can communicate online are normally “diagnosed” as high functioning.

Autism does cause me difficulties, even though I don’t have any associated learning disabilities or epilepsy. Most of it is stuff that no-one really gets to see unless they spend a lot of time with me (or happen to be around at the wrong time). I have meltdowns. During them, I have self harmed (not consciously- it just happens in an attempt to get the pain to stop). I had meltdowns in public until I became too ill to go out.

Meltdowns are scary. They happen when I’m overloaded, and since the world isn’t designed for autistic people, that used to happen an awful lot. As a teenager I’d be verbally aggressive and if anyone tried to touch me, would lash out. Sometimes I’d run away from the situation. As I got older and learnt to internalise it more, it would appear like a panic attack, and I’d bite my hand or scratch my skin or whack my head off the closest wall. I’d hum or scream to try and drown stuff out. Crying and trying anything to make it stop.

Other times I’d shut down instead. Less dramatic looking but just as terrifying to me. The outside world would be distant and feel wrong. I’d be unable to process anything and unable to think. Often I’d be very still (unusual for me – I was in constant motion normally, even if it was just my fingers or feet that were moving). I’d be unable to communicate no matter how much I wanted to. Someone who saw this told me it looked like I wasn’t there, and it scared them because normally I’d respond in some way, even if non verbally.

I’ve been told my meltdowns look like temper tantrums (I was told they were temper tantrums until I found out I was autistic). They scared me because I couldn’t control them. I didn’t want to be acting that way, but I didn’t have conscious control of my body. Both are caused by overload, and it’s like a computer crashing (one where it starts doing weird stuff, the other where it freezes).

I learnt to speak on time. Yet it was never completely reliable for me. I was called quiet or shy as there were times I just couldn’t speak (though it wasn’t noticed as such as when I could I spoke older than I was). The more expectations that were placed on me, the worse my speech reliability got as I had to use the brain power for other stuff. I was often punished for not responding or responding inappropriately and I hated myself as I couldn’t understand why it was so hard.

One area I did excel was academics. This hid a lot of my difficulties as I did well in school. Until I was 16 I had a photographic memory for text, which made learning very easy. I couldn’t manage homework for various reasons but on tests and exams I could perform. Teachers noticed I was clumsy, over sensitive, and that I struggled socially (especially after age 8, which is when my differences started becoming obvious to my peers) yet it was expected that as I was intelligent I’d just learn to be “normal”. It never happened. If I’d not been managing academically I suspect my other difficulties would have been picked up on a lot earlier.

One of the big reasons given to call someone low functioning is not managing toileting independently. I don’t understand the obsession with it. As far as I’m aware I was toilet trained at a normal age, yet as a teenager I started having accidents as I wouldn’t notice I needed the toilet until it was too late (would be called regression by some people). Eventually it was happening frequently enough that I carried spare clothes and a clean up kit whenever I went very far, and kept a spare change of clothes in my locker at college. I’m not surprised that it’s one area the ME made worse (as I have less brain processes to deal with recognising when I need to go, along with now not having control which is probably neurological) so I now wear incontinence pads, which is nowhere near the big deal many people make it out to be. Nor is needing someone else to change them because I can’t do it myself.

I know I’m more able to mimic neurotypical behaviour than some other autistic people, and that (along with being able to type well, and sometimes speak well) is why I’m classed as high functioning. Yet at age 20 I was nearly placed in a care home because I couldn’t live independently (still can’t and even without ME wouldn’t be able to) and I’ve been treated like I couldn’t think for myself when unable to communicate verbally (something that happens to a lot of people with autism and learning disabilities, and is always wrong). The local police thought I should be under a guardianship order due to how I appeared in public when alone. That’s not normally what is associated with high functioning.

It’s mostly luck that I managed to avoid the care home and probably a lifetime of being institutionalised. My social worker found some supported accommodation for me, and my friend Colin provided me with support at night when the workers weren’t there. Vicky moved in with me when I moved out to my own place and we helped each other. Johan moved in with me so that I wouldn’t have to go back into supported accommodation (or a care home) after Vicky moved out and I wasn’t able to even keep myself fed adequately. Louise at college sorted out loads so that paperwork I couldn’t manage got done (along with a ton of other stuff). My mental health problems were partially caused by not being able to cope and being diagnosed as autistic was the start of learning about myself and my depression getting better. Knowing why I struggled helped me to cope with it and either learn ways around my difficulties or know when to accept help to deal with them.

Having severe ME has given me some insight into what it’s like to be more severely disabled, outside of during overload. I’m not always able to understand speech. I’m not always able to communicate (at all when I’m paralysed). It’s incredibly frustrating. Even more frustrating is when my communication isn’t recognised, and at its worst has meant my basic needs weren’t met (I went 18 hours without going to the toilet, having needed medication or having a drink because the care home I was in wouldn’t listen to me if I couldn’t speak, despite being told it happens). I can’t always get my body to do what I want it to do (caused by both autism and ME) and when unable to communicate in any other way, it comes out in violence. Over the years I’ve both gained skills and lost them. Now I rely on other people for pretty much everything, though I’m grateful I can usually type. The times I’ve been treated as unable to understand or think for myself I’ve ended up overloaded, and if I were treated like that all the time instead of occasionally I wouldn’t be able to show what I could do, or learn new skills. I imagine that’s the case for at least some autistic people who are labelled low functioning. Being treated like a capable human being, who deserves the support I need, lets me be the best Danni I can be.

At times my difficulties have been dismissed as it’s assumed that because I can do one thing, I can do something else. At others it’s been assumed that because I can’t do something, I can’t do things I can do. To me it’s normal for people to assume when I can’t speak that I can’t understand. It’s wrong but it happens a lot. I want everyone to get the support they need to be the best they can be, whether that’s social support from friends, help with personal care tasks from carers, or anything else. Every person deserves to be treated as human, no matter what.

(I’m sorry if this is confusing or muddled. I’ve been trying to write it for several days and as most of it has been typed on my tablet, I couldn’t see much of what I’d written. My brain fog has been worse than normal so typing which is normally one of my strengths has been hard.)

Mar 252014
 

My blog post to-do list is growing. One of them I’ve made a start on, but I’m really struggling to write it. Most of that is because I’m now taking the domperidone three times a day and it makes me really dopey. I can cope with it- it’s not the worst side effect I’ve had to deal with by a long stretch, but it does mean I have very little brain power for things like writing blog posts that aren’t just a stream of consciousness.

The dopeyness has meant I’ve not been up to much. I’ve been on my computer everyday but I’ve not even logged into World of Warcraft for a bit as it’s just too much. I’ve spent a lot of time watching kittehs and some watching penguins. I have caught up with Total Biscuit’s Hearthstone videos finally, which is something. I love his gimmick decks as they’re really entertaining, and even if my speech processing is poor (though TB’s voice is easier than most for me to understand) I can at least see what’s happening for myself.

I’ve had no speech myself for a few days. It’s starting to get annoying. The new AAC app is really helping with that, though when I’m on my computer it’s a little awkward to use as I don’t have speakers connected to it at the moment. What I really need to do is get the front headphone jack hooked up so I can plug my headphones in there, my speakers hooked up again and then figure out having the different programs going out of different audio outputs. There’s got to be an easy way to do it but my brain is too bleh to figure it out (and I don’t have the speakers in here at the moment).

I’ve started using HabitRPG. It basically is a to-do list turned into a game. Being stuck in bed I can’t add the usual stuff to it (cleaning, going out, trying to exercise more) so I’ve had to be a bit creative in adding my habits, dailies and to-dos. While I’m still getting used to it the domperidone is down as a habit to work on, but once I’m taking it reliably I’ll be moving it over as a daily. My to-dos have various things on it, including the blog posts I want to write. Some of them require help though, like getting my penguin pictures on the wall and contacting social services about the hoist. It’s fun and I’m part of the Nerdfighters guild which I got talking about penguins :D

I accidentally wiped the data partition on my tablet while trying to update the Google Apps on it (I have them integrated into the ROM). Since I’d done that and Paranoid Android is currently in the process of reworking a lot of its features, I took the opportunity to try a different ROM out. I’m now on PAC-man, which I tried before but had issues with at the time. This time it seems to be working okay despite me being on the nightlies, and I really like some of the extra features. I also changed my font to Comic which made Johan facepalm but reminds me of Doge so I’m happy.

I can’t remember if I mentioned it here, but I discovered Johan had set the spam filter on our email server to automatically reject spam, and that it was definitely having some false positives of my email. Included in that was an email from EE, so there’s a good chance they actually responded to my email to them in December and it got eaten. Because of this, I’ve moved over to Google Apps for my email. Right now I’m importing all my emails from my other GMail account so I can have the few I still need to reply to in the right place. Since I basically archived all my emails from 2009 it’s going to take a while :P I’m hoping it’ll be done by tomorrow. As I still have them all on the other account, I’ll be deleting all but the recent ones to try and keep this one a bit clearer. I wish there was an easy way to just import the recent emails, but forwarding screws up the replying (I tried) and there’s no date selection tool that I found. Some of the emails I’ve seen are from when I was living alone, and it really reminded me about how badly that went. I know I can’t manage living independently, but it feels weird to see emails about how I would forget to eat and stuff. Not that it’s much improved now, but at least with the two of us one of us has a chance to remember.

Since I’m going to be paying for Google Apps (in a free trial at the moment) I want to take advantage of things like the custom domains. Johan couldn’t understand why I wanted them, but to me it’s obvious. As he controls the DNS at the moment and I don’t have the details I have to wait for him to do it and I’m quite impatient as I can’t click the button until the DNS is changed. I have changed the logo to a purple penguin one which makes me happy though :)

Primrose, my new microwaveable penguin, is fitting in well. She’s not quite as silly as the other penguins but I’m sure she’ll learn. She was disapproving of me changing my font on my tablet to Comic so I need to give her an education on Doge and similar things. She does help me with pain relief along with Penguin, and Penny and Po keep me company while they’re in the kitchen. Penelope wants a wheelchair so I am needing to find a penguin sized one (she thinks they’re cool).

Johan went out on Saturday to see some friends we’d made on Twitter who happen to be local. From what he told me it went well and he brought me back cake, which was amazing. Since Johan wasn’t too far away I was okay with being left, as he had money for a taxi if an emergency did crop up. With my carer coming though it was fine. He has discovered that if he uses his inhaler he can manage around cats much better. Turns out treating asthma helps ;) I’m trying to convince him to take his preventative inhaler twice a day as he’s meant to, so hopefully he will get less symptoms as that builds up in his system.

I’m hoping the dopeyness eases off as I get used to the new medication. Unfortunately it’s not having a great job dealing with my nausea so I’m sometimes having to take cyclizine as well, which really doesn’t help. It is making my digestive system more noisy than normal so hopefully it means it’s working to try and get things moving out of my stomach. Otherwise I’m going to be lying here pretty much useless for a while, and I don’t want that. I need to get into Minecraft soon to figure out getting to the moon, but that requires brain power I don’t have right now. Hopefully soon :)

Mar 192014
 

First of all, I’ve recently started reading another ME blog, Documenting M.E. Brooke wrote a blog post about living in bed that I found really helpful, including telling me about an Android AAC app that does pretty much everything I need to do so I don’t need to get an iPad now. The blog post is Tips on truly living from bed (the Android app is Speech Assistant AAC). The blog post is really good so I recommend you go read it :)

So, stuff has happened. Things have not exactly gone entirely to plan. Becca got some sort of viral infection and wasn’t able to stay to go to Comic Con. It looked like she’d be well enough to look after me while Johan went to Leeds, but then she tripped over the cat and fell down the stairs. Ouch. She’s doing better now but she had a massive bruise on her hip and it hurt her to move, so looking after me wasn’t going to happen.

Unfortunately I was too ill to go into the care home, so we managed to get some agency carers to stay with me on Thursday so Johan could still go see the ballet with Vicky. It meant he couldn’t see his parents though so we need to sort that out soon. I got lucky with the carers considering how short notice it was – had my normal morning call, a lunch call (that ended up being just after 11am as the carer couldn’t fit me in otherwise, but I went back to sleep so it worked well in the end) then my normal carer as a sit in from 1.30-7pm.

Partway through the afternoon I started having terrible stabbing pains in my right back when urinating. As I was calling out in pain the carer came to check on me, and we decided to phone the doctor. One of the GPs came out within an hour, and with my symptoms and history guessed it was an infection and prescribed the antibiotics that worked last time. The carer went to the pharmacy for me to get them so Johan didn’t have to worry when he got back. Johan’s train was delayed, and the carer insisted she was okay to stay until he got back. He said he enjoyed the ballet, though it moved a bit too fast. Vicky had an exam the next morning so would be arriving the next day.

Friday morning I felt terrible. Hot, sweaty, and generally bleh. That and the pain had spread to most of my urinary system. Definitely felt like an infection. I was glad I’d started the antibiotics the night before so it wouldn’t be too long. Ibuprofen brought my temperature back down and that helped a bit. Vicky arrived that day but I was asleep for most of it so didn’t really see her. Saturday morning I felt better until I took the antibiotics that morning. The fortisip I’d drank had made me a bit nauseous (the antibiotics had to be taken after food) and adding the antibiotic on top made it loads worse. I kept it down as long as I could but it got too much after about half an hour. I hoped it was long enough and took some antiemetics to try and get it under control. As they put me to sleep I didn’t see much of Vicky that evening either, as I woke up just before she had to sleep.

Sunday morning I was awake before Vicky left to go to church and go home. I saw her for a little bit which was good :) I felt a bit guilty that I’d slept through most of her visit but it couldn’t be helped. She’s going off to Palestine and Israel for a year for her PhD so it will be a while until I see her again. I am going to miss her but I hope she gets a lot out of it. Next time, I hope I can go see the ballet with her and Johan :) My antibiotics were only a three day course as we started it so early (a couple of hours after the first symptoms showed) and they seemed to have done the job by the time I’d finished. I’m a little achy when peeing now but that happened after the last infection and disappeared after a few days.

Other things that happened were seeing my normal GP (before the kidney infection) and she tried me on metoclopramide, which made me very agitated and feel wrong. Not being able to stop moving when moving causes my ME to get worse is a definite bad thing. I stopped them and she prescribed me domperidone to take instead. I postponed them initially until after Johan had gone to Leeds in case of side effects, and then because I wanted to get the kidney infection out of the way so I’d know what effect they were having better. I took one dose yesterday and so far today (I’m starting them slowly after what happened with the metoclopramide) and it has made me even more dopey and weird feeling than normal, and a bit hungry, but otherwise it wasn’t too bad. I have to take them 60-90 minutes before food which will be interesting.

CFS team came out today. Went about as well as it could. They’re gonna come back in two months and in the meantime I’m to keep going with what I’m doing (basically a few stretches to prevent my legs from being unable to straighten and trying to sit up as much as I can without payback) and try and get social services to sort out the hoist. Johan also gave me a wash and helped me put my rainbow dress on as I wanted something different to my normal pyjamas today :)

I have upgraded my desktop computer Matilda to Windows 8.1 Pro. I have Windows 8 on my laptop, but as I don’t use that at the moment I’ve missed some of the improvements that are in the new version of Windows. I’m not amazingly keen on the Metro interface, but I renewed my subscription to Object Desktop by Stardock so after downloading Start 8, Decor8, ModernMix and a few other little programs it’s now a perfect mix between the advantages of the newer OS (it runs a bit faster, has a much better task manager and some of the Metro apps are good) and having the start menu and running all programs on the desktop from Windows 7. I also have Pikachu as my Start button which made Johan facepalm but I like him :) I still couldn’t find a twitter app that does what I want so I installed BlueStacks so I could run Android with Plume. It runs loads better than it used to and if I could use the mouse scroll wheel with Android it would be perfect (it kinda works, but it scrolls slightly more than one page at a time so it’s not exactly practical). A touchscreen would be nice as well, but using it with a keyboard and mouse works fine with the added programs.

My friends are awesome. Seeing Vicky was another reminder that I have the most awesome friends. When I improve and start getting out again I hope to see some more of my friends in real life, but I’m glad I can see what they’re up to using social media while I’m stuck in bed. I am worried that Johan doesn’t get to see his friends often enough. I’m hoping to persuade him to try the local tabletop gaming club (one exists in Newcastle), maybe on International Tabletop Day (5th April). He’s not sure but I think he’ll enjoy it and if he doesn’t, he can leave. Being able to go and do something not related to looking after me would be good for him, and yet it’s close enough that in an emergency he could get home quickly. Using the care agency for sit ins regularly isn’t really an option (last week’s will be about £70 for a few hours) and most of his friends don’t live locally, so I’m hoping he’ll make some in the area or at least enjoy playing games. I’m also hoping he’ll be a

It makes me sad when my friends aren’t well. As a lot of them have various chronic illnesses, I normally consider it relatively (though obviously I wish they weren’t ill at all). A few of them are struggling (physically, mentally or emotionally) and I wish I could just make them feel better. Sometimes I feel helpless when I’m unable to chat to them or do anything that might make them feel better. My friends have done so much to make me feel like I’m wanted and worth caring for and I want my friends to know they’re awesome and I love them, even if I’m not always able to show it. I love them and I want them to be happy, no matter what happens.

Mar 172014
 

I’ve got lots of things I want to blog about, so of course I can’t seem to manage any of them. Instead, here’s a meme I stole from Stimey.


What is the last thing you watched on TV?
Part of a My Little Pony episode. I realised I had no idea what was going on halfway through and haven’t finished it yet. I’ve still got stuff to watch from Christmas.

When did you last step outside? What were you doing?
Last time I stepped outside was one step while held up by two ambulance men to get from the front door of my old flat onto a stretcher, in December 2011 (I couldn’t really walk but it counts). I was going to hospital to get some teeth removed. Last time I went outside was in January. I went to the bottom of the ramp in my wheelchair to see outside and it was amazing.

What is on the walls of the room you are in?
A penguin that Sammie painted when she was in nursery. She gave me it a few years ago. I’ve yet to get my other pictures and posters up, but it’ll happen at some point.

If you became a multi-millionaire overnight, what would you buy?
A bungalow with lots of adaptations to make it accessible to Danni’s. A special hospice for those who are severely ill and need extra quiet and care. An awesome computer :-D I’d also employ some awesome people to help me and Johan out.

Tell me something about you that most people don’t know.
In year 7 I won an award for RE presented by the Archdeacon of Liverpool. In year 9 I failed my RE exam by falling asleep during it.

Who made the last incoming call on your phone?
An unknown number on my mobile. We suspect it was the GP surgery as they phoned our landline a couple of minutes later. I don’t use the phone.

If you could change something about your home, without worry about expense or mess, what would you do?
Get that hoist I need installed. Figure out a way of installing a bath. As it’s a flat we’re limited in what we could do building wise, so moving would probably work better for bigger stuff.

What was the last thing you bought?
A phone charger for a friend. Before that, Windows 8.1 Pro and Object Desktop for my computer (yay discounts!).

Would you go bungee jumping or sky diving?
When I’m a bit better, definitely. Not sure my body could tolerate either right now ;-)

If you could eat lunch with one famous person, who would it be?
How do I work out what famous means? There are a lot of people I’d like to have dinner with who are pretty well known, at least in the communities I’m in. I think having dinner with Maureen Johnson would be interesting.

Which store would you choose to max out your credit card?
First I need to get a credit card, then it depends if I have to pay it back again ;-) I love geeky shops, book shops, and small shops with awesome things. If I have to pay it back, I’m most likely going to spend it on something we need.

Is the glass half empty or half full?
I don’t know as I can’t see it. My hydrant is empty as I just finished the juice in it. The glass might just be twice as large as it needs to be. In the metaphorical sense, it’s kinda both. There’s good and bad in the world, and though I try and concentrate on the positives that doesn’t mean the negatives aren’t there.

What’s the farthest-away place you’ve been?
Either Calais, France or Balmedie, Aberdeenshire, Scotland. France is more foreign but at the time Balmedie was further from Liverpool. I need to see which is now I’ve moved north east :-)

What’s under your bed?
I’m not meant to have anything under my bed as it’s a hospital one. In reality I have a storage bag of clothes, and whatever I’ve knocked off the bed or tables (there’s probably a few penguins, milkshake bottle tops, empty blister packs, small sweets that insist on escaping like smarties).

What is your favourite time of the day?
Probably nighttime. I’m naturally nocturnal and it tends to be quieter. Also, any time of day where my painkillers have kicked in and my symptoms aren’t too bad.

What Inspires you?
People who are able to keep going, especially when life is being crappy. Also those who are strong enough to ask for help when they need it, or know when to stop (it’s often harder than trying to push through). Also penguins.

If you want to do this meme, I’d like to read your responses, whether on your blog or in the comments. Also, Stimey’s responses cheered me up :-) Proper blog post coming when able.

Mar 042014
 
Penguin and Penelope. Penny's wing is bandaged.

Penguin and Penelope. Penny’s wing is bandaged.

I’ve had a rough day. My prescribed Fortisips arrived and though I was meant to be prescribed only chocolate and vanilla flavours, the first one Johan gave me was Fruits of the Forest. Which my body reacted to as badly as it did the Skittles milkshake and strawberry milkshake I tried, confirming that I can’t have fruit flavoured heavy drinks now (I can manage fruit squash okay, but pure fruit juice, smoothies and fruit milkshakes cause worse nausea; and burn my throat and taste disgusting when they’re brought back up). I also had my body attempting the final part of digestion, which had me shaking, sweating, curled up in a ball and at one point crying from the pain. It lasted several hours, and I’m grateful that I didn’t have to attempt it on a bedpan or toilet as though the clean-up sucks being able to lie on my side did help a bit. I think the worst of it is over this time.

Penelope’s wing got burnt in the microwave :-( I performed surgery (cutting away the burnt fur/feathers and removed the burnt stuffing) and have used a part of a dressing to stuff her wing and have bandaged it up. We’re going to look into a skin graft but even if that is possible her heating days are over. I’m giving her loads of cuddles and she’s asked me to find one of her siblings to do her job. Unfortunately the Intelex website is out of stock of Penny’s sisters, but I’ve emailed them asking when they’ll next be available and if that fails, I’ll look elsewhere. She might be a disabled penguin now but I still love her very much.

Despite all that, I’m happy. I believe that every person has at least some goodness in them (even Tories, though it can be hard to see there) and my friends show me their love and goodness all the time. I have Johan, who does everything he can to make me feel as comfortable and well as possible (and didn’t even complain about the messy clean-up earlier). It can be easy to think everyone and everything is bad when that’s what must of the news concentrates on, and there are a lot of bad things that happen, but there are people trying to make the bad things less bad and do more good things. One of Nerdfighteria’s aims is to reduce world suck (the other main one is DFTBA – don’t forget to be awesome).

I might blog about the downsides of having severe ME (and like a lot of disabling chronic illnesses it sucks a lot) but part of me learning to adapt to it was to try not to dwell too much on it. Blogging and tweeting helps me with this- once I’ve written about it it frees my brain to think about other things, and knowing that there are people who care really helps. Having ME has opened me up to a whole community of good people I proudly wouldn’t have met before, some of whom I now class as friends. I still want a cure and wish my friends weren’t suffering, but I’m grateful for what it has brought me. (I try and keep out of the politics side of ME for the same reason I limit my intake of bad news- there’s nothing I can safely do to help and there’s a lot of (mostly justified) negativity that makes me more ill.)

I’m also grateful to be Autistic. Unlike the ME I don’t want to be cured, despite the difficulties it can cause. I like who I am and I wouldn’t be the same person without it. I discovered Second Life through the autistic community, and without that I would never have met Johan. Autism doesn’t make me ill- it means I think and process stuff differently, but it’s not broken. I have super senses- it may mean I can’t tolerate loud noises or certain smells but it also allows me to enjoy lights and sparklies in a way I can’t explain. And every time I see a penguin it makes me very happy. The autistic community has also introduced me to some awesome people I otherwise wouldn’t have met, and learning there were people like me has been very positive.

Lent begins tomorrow. I’m not giving anything up for it this year- if I were to give up something food related I think my dietician would kill me, and I’m not sure what else I could give up. Instead, I’m going to try and do nice things for people. After I wake up I’m going to make a list of the specifics of this, but some ideas I’ve had are writing a note to someone on Post Pals, sending someone who needs cheering up a small gift, and seeing if I can help someone with one of my skills (I might not have many I can currently use, but there are still some).

Good things that have happened today include playing some World of Warcraft, Johan and the other raiders in my guild managing to kill Heroic Paragons, managing to install a new beta version of Paranoid Android on my tablet (accidentally wiping it in the process, but it needed it and I’d backed it up yesterday), cuddling my Penguins, making Penelope feel better, getting clean, dry pyjamas on, joking with Johan, talking about interesting things with my guild in Mumble, playing with the Google Now speech recognition stuff, and writing this blog post. That’s quite a lot considering I’ve been awake less than twelve hours and haven’t got out of bed :-P Time to sleep now, and that’s good too.

Mar 022014
 

Although the beginning of the month took me by surprise (yesterday I woke up late after a 16 hour sleep and was convinced it was still February until I got my Brew of the Month club mail in World of Warcraft) it’s shaping up to be quite a busy one for us.

Becca is staying with us next weekend as she’s going to Newcastle Film and Comic Con and we live much closer than she does (she lives in the middle of nowhere with a rubbish bus service and worse internet connection, we’re quite central with decent buses, walking distance from Newcastle if necessary, and awesome internet). I wish I could go with her as it looks to be amazing but will have to experience it second hand. Her staying here should make that easier though :)

Vicky has invited Johan to go see the ballet in Leeds the week after, and he’s going to go down a couple of days early to see his parents and friends and so on. Becca has kindly offered to look after me so I don’t have to go into a care home :) After the ballet Vicky is going to come back with Johan so I can see her before she goes gallivanting across the world. It’s been a while since I last saw Vicky in person so it will be awesome. She’s a low energy person so I’m hoping to be able to chat while she’s here :) (Different people require different levels of energy for me to be able to be around them- it’s not a bad thing, or related to how much I like the person, just something I have to take into account when it comes to visits and things.)

The week after that I have the CFS team coming out to see me. It was meant to be to discuss my visit to see my consultant but since that hasn’t happened I’m not sure what we’ll be discussing. They are helpful but exhausting so that is also a big event in my calendar.

I am not doing amazing at the moment. The curtain has been up for a while and today I’m non-verbal again. Moving causes my back to go into spasm so I’m trying to remain very still. Johan has dosed me up on painkillers and an antiemetic to help with the nausea and heated penguins so I’m as comfortable as I can be, which is good.

Yesterday my carer went to Primark for me to get me a penguin onesie. Although I have one, it’s huge (XL men’s) and I wanted one that would fit a bit better. They were reduced and since she was going to be in there anyway she offered to get one for me. I love it and can’t wait to be well enough to try it on :D

My World of Warcraft playing is good at the moment. Not well enough to do any raids (not even LFR) so I’ve been concentrating on levelling. My blood elf paladin Catalia is now level 73, and my recruit a friend character that I’m levelling with Becca, Caitlyna, has reached level 60. We’ll be going to Outland when we next play together :) It’s interesting trying to teach her- she wasn’t doing well on DPS in dungeons (she was asked about it during one of the runs- once I explained she was new they were fine though) and I discovered it was mostly because she wasn’t using charge (her character is a fury warrior). I’m also trying to teach her not to click the abilities and to use the keyboard instead, but she’s finding it difficult. Unfortunately unlike me she’s unable to touch type which helps a lot for being able to use key bindings without looking, but I’m hoping with practice she’ll be able to manage it at least some of the time. I showed her where the training dummies were in Stormwind and asked her to install a damage meter so she’ll be able to practice :)

I’ve been watching a lot of Foster Kitten Cam recently. The Ghostbuster kittens are so cute! It was sad last night though as Peter, one of the kittens, died in Foster Dad John’s hands. It upset me quite a bit even though it’s not uncommon for kittens to not survive. He was so active, constantly trying to escape, and I know he will be missed by a lot of people. His litter mates, Egon and Ray, are also really active and keeping their mamma Janine busy. Earlier today one of them escaped the box and mamma had to carry him back in :P

I tried to watch some Hearthstone earlier but not quite got the concentration for it. I think I’ll go do some easy levelling or something in World of Warcraft. I’m hoping my body starts behaving better soon but until then I’ll just do what I can to not get worse and distract myself from the worst of the blehness.

Feb 282014
 
  1. See dietician on 22nd January. Due to current inadequate food intake, she prescribes Fortisip food supplements.
  2. Letter arrives at both GP and home a few days later, including details of the prescription. Have no idea how to actually get said prescription, as how to get prescriptions after they’ve been sent to your GP was not part of either Danni’s or Johan’s education.
  3. See the social worker for a care review the next week. Tell her about the not having any idea how to get the prescription issue. Social worker says she’ll contact the GP to sort it.
  4. Get distracted by other issues. Order repeat prescription of painkillers a couple of weeks later. Due to anxiety issues, have to wait a few days for Johan to pick it up from the doctor to take to the chemist. Johan collects painkillers on 18th February. Johan notices that the Fortisips are now on the repeat prescription.
  5. Johan tells Danni that Fortisips are on the repeat prescription the next day. Danni asks Johan to order them. Johan attempts to do so that week but the GP’s opening times have changed and they’re closed when he gets there. Johan panics.
  6. At the weekend Danni tells Johan he can either put the Fortisips prescription in himself or she can ask carer to do it, but it does need doing. Johan states he doesn’t want the carer to do it.
  7. On Monday 24th February Johan calls the GP surgery via Skype to put the prescription in. It would be ready by Wednesday.
  8. Wednesday Johan is busy doing stuff in the flat and is unable to get to the GP surgery before closing time. Decides to pick it up Thursday instead, when less busy.
  9. Wednesday night upstairs neighbour turns electricity off for both ours and ground floor neighbour’s flat, and turns our back on. Johan sees upstairs neighbour running up the stairs straight afterwards. Ground floor neighbour accidentally turns our electricity back off when trying to turn his back on, and Johan speaks to him outside flat. Upstairs neighbour hears conversation, comes down, denies being responsible for the electricity being turned off, and when Johan informs him he saw him threatens to make Johan’s life hell.
  10. Thursday Johan is scared to leave flat due to neighbour’s threats. Johan emails the housing officer about this, and Danni and Johan discuss things that need to be done to ensure safety. Johan not wanting to leave the flat and Danni alone means he cannot go pick up prescription. When carer arrives for evening visit explain everything to her. Carer offers to pick up prescription and put it into the chemist before morning call the next day, as it’s close to where she lives.
  11. On Friday (today), carer collects prescription and puts into chemist. Arranges for Fortisips to be delivered on Monday morning. During morning call tells Danni that she managed to sort prescription and when they’re being delivered. Danni is relieved. When Danni manages to wake Johan up she informs Johan of carer’s success and delivery on Monday.

Getting these Fortisips has been a lot more complicated than we expected. At first we didn’t know how to order them (and we’re still not sure if we get a similar situation, though I’m going to ask the GP next time I see her). We were lucky that the social worker came out not long after receiving the letter from the dietician and that she offered to sort it for us, and that the carer was able to pick up the prescription this morning (though she can make phone calls for me as Johan normally picks my medication up with no/only minor issues picking up prescriptions isn’t on my care plan). Hopefully they’ll arrive on Monday and from then on they’ll just be ordered as I need them along with my painkillers. (I know about online ordering of prescriptions but to complete the online registration you have to go to the surgery to prove who you are- which I can’t do. I’m going to ask my GP about it when I next see her.)

We’ve had ongoing issues with our neighbour but this is the first time he’s directly threatened us, so as I’m very vulnerable (being unable to move or easily contact people) Johan doesn’t want to leave me until things calm down. Things we need to do before we’ll feel safer are find out if the care call system still works if the electricity is switched off (as if Johan isn’t in I can’t switch it back on myself) and also get the care call pendant swapped to one I can actually use (as the current one requires too much pressure to push and for that reason I was unable to use it the last time I needed it).

During the last emergency (when Johan had to go into hospital) I ended up communicating via the internet, and if the power goes there’s a good chance I won’t be able to use it as the router goes off. I do have my iPhone with tethering as a backup, but I’m not always able to use my iPhone (hand spasms and shakes make using such a small touchscreen difficult, and impossible when they’re bad) to switch it on. Thanks to Tablet Talk I can send text messages from my tablet via my Android phone which I can use despite spasms, but as far as I’m aware care call don’t have a text number and when I tried contacting the duty social worker via text when Johan was in hospital I got no response at all. In an absolute emergency I can text 999. Most services expect you to phone them and when you can’t you’re stuck.

In the longer term we are going to look into getting our electricity meter moved into our flat, or if that’s not possible asking the council to put a decent lock on the cupboard door so that the upstairs neighbours can’t touch it. I’m also going to look at battery backup for our router as internet is so important to both of us. I’m trying to find a text phone service via broadband but although there used to be one that I used years ago I can’t find it now- the closest thing I’ve found is TexBox, but their app only works with certain companies (none of which are relevant to me) and I couldn’t find an email address to contact them (only a telephone number and a text phone number- which I can’t use). Text phones themselves are expensive and none I’ve seen are good for using in bed so aren’t the ideal solution. If anyone knows of a way of using text relay via internet (either Android app or via computer) then please let me know. Johan finds Skype easier to use but as I have auditory processing issues and speech issues that’s not a good solution for me unless I’m Skyping someone who can also receive the messages in text.

Feb 232014
 

Lying here in bed feeling rather sick, dizzy, boaty and, well, ill, I’m doing quite a bit of thinking about random stuff. This is just a brain dump.

Accessible buildings are good. Accessible attitudes are better. My old pharmacy had a curved step up to the door. Not ideal if you use a wheelchair. They had a ramp available and showed us how to get their attention if we needed it. If we didn’t want it (sometimes Johan would just lift my chair up the step, and it wasn’t designed for a curved step so was scary) they’d hold the door open. They eventually moved to a new premises when the doctors did, with a proper ramp built in. But I knew I could get in because they wanted me to be able to.

The local supermarket was level access. Automatic door. Apparently accessible. But less accessible than the pharmacy because they’d put temporary displays in the way so I couldn’t get down all the aisles. And an attitude of not caring. They didn’t want me to be able to access it, so I stopped going there.

A small independent clothes shop I love. The shop very small, and there wasn’t quite room for my longer than average wheelchair to get around. They acknowledged me every time I went in, offered to move displays so I could get around, and bring things to me if it was out of reach. Agreed it wasn’t ideal, but the attitude made me feel valued. Their bigger shop was easy to get around, but they were just as friendly.

A large chain clothes shop. They have a lift, and level access. And put the clothes displays even closer together than the independent shop did, so I couldn’t see everything. And indifferent staff.

Years ago, getting the college bus was a friend from my course and occasionally there was a girl with learning disabilities who would get the same bus as she lived in the same general area as we did. My friend treated her the same as he does everyone, with mild friendly insults (not related to her disability). She’d laugh at them, as I did with mine. We had fun. He was told off for treating her as an equal. I still don’t understand why.

Events for the general public that ended up being more accommodating of me with my disabilities than events for those with one of them. Feeling valued as a person, and when I became unable to attend any longer asked if there was anything they could do to make it easier for me. Yet the event for people with specific disability being held in noisy, inaccessible pub that made it difficult for those with that disability, never mind any additional ones.

Since becoming visibly disabled (I’ve always been disabled, it was just “invisible” until the ME required me to start using mobility aids) I’ve been learning more about what accessibility is, and not just for those with mobility issues. Before I used to feel like I was the problem, now I want reasonable adjustments to be made, especially since those adjustments can make things easier for the general public as well.

The most patronising person was someone who provided special needs dentistry. As soon as she discovered I was autistic she stopped talking to me as an adult (as she had been up to then) and started talking to me as if I was a naughty child. And spoke to Johan as if he was my parent, not my partner. Neither of us knew how to respond to that, and it was a relief to be referred somewhere else. They treated me as an adult, even when I appeared odd or couldn’t speak.

There are awesome people who go out of their way to help, but in appropriate ways after checking such help is wanted. And other people who try and force unwanted help on me, even when it’s completely inappropriate. And awesome people who are quietly accepting of difference, making me feel like I’m wanted and worthwhile.

Accepting help is hard. I still want to be as independent as I did before ME. Yet accepting help enables me to have a decent quality of life despite severe illness. Sometimes I still push to do things myself and make myself more ill, because I feel like I should be doing it and don’t deserve help. But I’m slowly learning. My worth is not based on what I do, but on my being a person.

I feel extremely lucky and I’m very grateful for what I have. I have amazing friends. I have great family. I have Johan. Thanks to the benefits system, we have enough money to live on, which also means Johan can be my carer full time. I have access to the NHS, which despite all its faults has kept me alive and is part of the reason I have such a good quality of life now. I have health professionals who visit me at home, medications that help a bit with some of my symptoms, incontinence pads that keep my dignity, and an adjustable bed that helps me not get bed sores.

And yes, I do rate my life as good, despite being in constant pain, feeling terribly ill and completely bedbound. ME is an incredibly sucky illness, but I can do things, even if they’re only small things like roll over in bed or communicate. Deciding to stop fighting being ill and learning to live with it was one of my better decisions. It doesn’t mean I don’t want to get better and I’m hopeful I’ll improve in the future, but my body is trying to keep me alive through everything and if I work with it I think I’ll give it the best chance to keep going and hopefully start working better.

And there are penguins. Everything is better with penguins.