Category: Physical Disability

Danni

Required: Two Sets of Working Legs

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

A lot has gone on this week. It seems I really am improving. After going to the hospital for a scan last week, on Monday I went into the living room and watched Penguins: A Spy in the Huddle on BBC 1 (Penguins! Robotic Penguins with spy cameras! David Tennant narrating!) and was in there for a couple of hours. On Wednesday I watched a documentary in bed on my computer.

Wednesday afternoon Johan and I were discussing him going into Newcastle to pick up a few items the next day if the weather improved, as it was too icy to attempt it right then but he wanted to go out. A few hours later, Johan was having real trouble with his balance, and he felt quite weak. I demanded he get on my bed with me until it passed and we watched the documentary together. He was going to change my pad but when he tried to fetch one and the wipes he fell, lots. I made him rest a bit, and then he wanted a drink so tried to get to the kitchen to get one. He ended up crawling as his legs wouldn’t hold him but then he couldn’t get any of the bottles of pop so he couldn’t have one. It was about 8pm and I realised he wouldn’t be able to go open the communal door so we cancelled the carer.

A bit later he decided to try and go get something else. This time he basically fell off the bed and couldn’t even crawl. We realised that it was getting serious so after getting back on the bed (which was really difficult for him but he just about managed it) I asked Twitter what to do, as although I had a care call alarm using it means I become non-verbal (it’s stupidly loud) and I can’t use the phone as I can’t hear or speak properly on it. Twitter agreed he needed to be seen to urgently (he was also really dizzy and starting to become rather out of it by this point) and I was able to text 999 for an ambulance, which was interesting. They asked the same questions as they would over the phone, and it finished when the ambulance arrived.

The ambulance people (I get confuzzled between paramedic and technician so will call them that) were sensible and when we didn’t answer our buzzer to open the communal door (which I mentioned by text we’d not be able to do) they tried the other ones until someone opened it. Luckily our door was unlocked so they could get in. They did some basic tests, which were normal, then asked if Johan wanted to go to hospital. At this point I was really worried so said it would be best. Johan didn’t argue (he’s terrified of hospitals so I knew he really was ill then). Because of the icy conditions they weren’t able to carry him out (or use a wheelchair as the ramp was just ice) but they said they’d support him with walking.

Before leaving one of the ambulance men rang the emergency duty social worker to let them know Johan was going into hospital, and I’d need some help that night before I could sleep, things like a pad change (pretty urgent at that point), medication (which Johan wasn’t well enough to give me and was due after they left anyway), a drink as my hydrant was low, and stuff like that. They promised to contact someone and send someone out. The ambulance man was good and told them I’d not be able to phone, but gave them my mobile number so they could text.

They took Johan to hospital, leaving my flat door unlocked so whoever came would be able to get in, just after 10pm. I was a bit scared but more worried about Johan at this point. Johan didn’t have his phone as I forgot to make sure he had it and he was too out of it to remember. My sister Meggy was in A+E already when he arrived though (she has gallstones at the moment) and let me know on Facebook she’d seen him come in so I knew he was there safely. At around 1am I got a phonecall on my mobile, which I couldn’t reach to respond to,and the noise and anxiety it caused meant I could no longer speak. I didn’t get any text messages as promised.

I hunted out the text number for the emergency duty team (which took a long time as the website is really difficult to navigate now) and sent them a text message explaining what had happened, and that I still needed help. I got no response to that, either. By 3am I knew that Johan had been admitted as it was well over 4 hours since he’d gone into A+E, and it was what I was expecting anyway.

Around 4am I attempted to press the care call button as I was getting desperate (having had no medication since about 6.30pm, I had nothing to drink and a really dry mouth, my pad was so saturated I’d taken it off, and having wet the mat on the bed as my bladder had spasmed and I didn’t know I was peeing until I felt it going down my leg). Unfortunately I was doing really badly and no matter how hard I tried, I didn’t have the strength to push it. A bit useless then.

I put a call out on Twitter for some help as I wasn’t coping. Luckily Penni was feeling very brave and phoned the emergency duty team again. This time they said they’d ask the district nurses to come around and help me. I got a phone call on the landline this time (which is in the living room, and I can’t use anyway) but nothing else. Indigo Jo was now awake and offered to ring up again, which he did. He chased them up, they claimed they’d visited earlier but couldn’t get in the communal door (and they certainly hadn’t tried asking one of the other flats, as they’d rang no bells as I can hear 3 of 4 clearly and the fourth when it’s quiet). He kept chasing them and eventually he got told I was next to be visited.

Eventually the district nurses arrived. They rang one of the other flats to be let in after getting no response from my bell. When they got there they were apologetic that they’d taken so long. They were surprised I’d been waiting all night, as they only got the referral at about 5am (when Penni had phoned). They changed my pad, got me a drink, gave me my medication, offered me food and promised I’d get another visit soon and they’d arrange respite. They took my keys as well so they could get in easily. Indigo Jo offered to phone the hospital so Johan would know I was okay now and that I was going to go into a care home, which made me feel better as I knew he’d be worried, and meant I got an update on how he was doing.

I managed to nap a bit, and my favourite carer arrived as normal at 10am. She’d asked one of the other flats to let her in as she knew something was up when we didn’t respond to the bell. I explained a little what had been going on (I was typing on my tablet and as it’s broken it kept stopping, which was annoying) and she was worried. I wasn’t feeling up to anything so she went and sorted things in the kitchen, wrote in the book and after checking I was okay, left again.

After more of a nap (I was tired), the district nurses arrived again, with the duty social worker. They sorted out my medication and things, and then offered me a place in a care home around the corner from where I lived. After a quick Google to check it wasn’t run by the same people as the first care home I went to (it wasn’t), I agreed. They sorted out all my stuff, and I got into my wheelchair with a bit of help and after a few struggles trying to get it to tilt was settled in it. One of the nurses took my stuff up to the care home in their car, and the social worker and the other nurse took me in my wheelchair up to the care home.

The social worker was pushing me, and struggled a lot with the hill on the way (it’s pretty steep, but Johan would have managed it the day before). When we got to the care home things got sorted. The room I have had a normal single bed in it, but when I mentioned that I fall out of them and needed rails they said they’d replace it with a profiling (hospital style) bed. While they were sorting the bed out I got a little tour of the care home, and spoke to the social worker about things for a bit. They managed fine with me typing on my tablet, and were keen to make sure I was okay. The social worker left after a bit (he was nice) and my bed was ready so they hoisted me in. It was weird being hoisted and as I was having a bad day anyway and had been in my chair too long I started having a jerking attack, which one of the carers thought was a fit (it looks like one, but I had head control so I shook my head to say it wasn’t).

Once I was in bed they did everything they could to make me comfortable and make sure I was okay. I rested for a bit (and my speech came back), then sorted out asking someone to get stuff to Johan and fetch a couple of items I needed but had forgotten. Louise was able to help, and she came and sorted everything for me and Johan. She was brilliant and it meant Johan had his phone again so I could talk to him and see how he was. By this point he was feeling okay but his legs still didn’t work. He’d had a lumber puncture and was to have an MRI scan.

Things have been as okay as possible since. The care home staff are brilliant- they really want to do everything they can to make me comfortable, they ask me closed questions, and have made it really clear that if they can help in any way, they want to. The one thing they hadn’t told me was that the bed had an air flow pressure relieving mattress, where different parts of it inflate and deflate to move you slightly to prevent pressure sores. The first time it moved I was wondering what on earth it was, but I worked it out. It’s a little noisy but I can cope during the day and wear ear plugs at night when I want to sleep, and it is comfortable and for the first time in months I’ve not had sore hips from being on my side.

Johan is doing okay. He hated being stuck in bed, so asked about getting a wheelchair. They didn’t have any self propelling ones, so as my sister Becca had agreed to help me today she took my old, slightly broken up one for him to use. He’s glad to have the independence back, as he hated not being able to go to the toilet or anything. He had his MRI and all the results he’s had back so far, including the MRI, are normal so they’ve no idea what’s wrong. His legs are incredibly weak- he can barely move them and they won’t hold him up at all, but all feeling and stuff is normal. I get the same thing but that’s due to my ME, and he’s not got anything like that. It looks like he’ll be referred to a specialist neurologist which will probably be in the RVI in Newcastle. We don’t know how long he’ll be in hospital, but if his legs don’t improve soon we’ll have to make some changes at home, will need more care for both of us and things. It’ll be okay though whatever happens, though we both are praying he’ll be able to walk again soon.

Becca was brilliant. She’s going to spend a bit of time at our flat, so she can help us out for a little bit as it’s close to both the care home and the hospital. She brought my post (nothing really important) and as I had a really good day (the best since I first relapsed in November) she took me to visit Johan in hospital. That was brilliant for both of us, and we even managed to visit the restaurant 🙂 For a beginner, she’s pretty good at managing my chair as well, especially as it’s really long and heavy.

We have learnt a few things from this. We’re going to try and sort stuff out while I’m in respite, as that’s easiest. We definitely need a key safe, and a better way of dealing with an emergency. Care home staff can be good. Hospital food isn’t that bad. Johan can tolerate needles if he has no choice. The big thing for me is how helpless I felt being left overnight- if I’d not been able to communicate with my tablet I dread to think what would have happened, as being non-verbal or unable to use the phone meant they didn’t help me as early as they should have, and I literally couldn’t do anything else to help myself. If I don’t have help, I go without a drink, a pad change, medication as I can’t do it (believe me, I tried). That’s what severe ME can be like.

We’ve had loads of support from friends on both Twitter and Facebook, and I’ve not been able to respond to most individually yet but we’re both really grateful. Loads of offers of help and if we’d not had it, I don’t know what would have happened. It’s been amazing. Thank you.

Danni

Stuff That Happened

Autism, Computers, Danni, Gaming, M.E., Mental Health, Penguins!, Physical Disability, Real Life, World of Warcraft
I'm out of bed! Yay!
Danni in the hospital restaurant

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

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

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

Danni

Hello Matilda

Autism, Computers, Danni, Important Stuff, M.E., Penguins!, Physical Disability, Real Life, World of Warcraft

I’m still stuck in bed. Sitting up isn’t working, moving is difficult and most of my symptoms (apart from light sensitivity) are still really bad. Because of this, we moved my desktop computer (called Matilda) into my bedroom temporarily so that I have a decent machine to use.

I had been trying to use my laptop (Annika) but as she’s over 5 1/2 years old and a bit broken, it was rather frustrating and meant I couldn’t do as much as I wanted to. Playing games wasn’t working as the lag was making my motion sickness really bad. Reading stuff was easier on my tablet, and typing was an issue as the wireless keyboard I used with it was too lightweight so kept moving when on me and I couldn’t be propped up enough to use the laptop keyboard comfortably.

I know the most likely reason I’m not improving like I’d normally do. Our upstairs neighbours are still causing a lot of noise every other night which makes me more ill. I have managed to send an email to the housing officer but have yet to have a response. Writing that email made me feel terrible though, and it’s not the only communication thing I have to do (I can write blog posts as they’re just a brain dump- emails need to be properly written and that requires more brain power than I really have).

I have not seen my GP yet. Johan tried to phone her before Christmas but we never got a call back, and he’s been too anxious to try again. I really need to speak to her as the dietician prescribed supplements and I need stronger painkillers (we’ve had to resort to doubling my tramadol when it’s unbearable, as it’s less risky than going to hospital for morphine). I also really need to get my bladder issues sorted, as while I don’t mind wearing incontinence pads for now, I don’t want to need them for too long if I don’t need to. They have made a massive difference though, and I’m less sore than I was using the bedpan.

The care agency is still messing us around. I need to complain but I haven’t got the energy. What we need is support with communication and appointments- someone to help us with sorting paperwork (now I’m no longer well enough to do it), telephoning people, helping us write emails, making appointments, informing people of our needs (I have an ultrasound next month and they say to phone them if you might need help getting on the bed- we need to let them know that and that I’ve got a big wheelchair as the waiting room is really small). I asked and asked for help finding someone but we got nowhere, and now I’m too ill to do it. I knew this situation would occur but that doesn’t matter to anyone like social services.

We’ve had some good news. Scottish Power asked for our meter readings, and though it took Johan a while to actually get them (anxiety and forgetting) once we gave them they have reduced our direct debit as we’re well in credit and it was set too high. It was already quite a bit lower than at our old place so this flat must be better insulated and stuff. That’s an extra £25 a month which will come in handy. We’re also getting two cold weather payments as it’s been so cold (and I’ve had to ask Johan to turn the heating up as my nose was getting cold- indoors in bed). I’ve decided to use them for bedding as I’ve seen some awesome rainbow ones online that are the type I’ve been looking for for years, and since I spend so much time in bed it will help.

Having Matilda in here is helping me so much. We have my big monitor on my overbed table, my mouse on a pillow and book on the bed and my keyboard propped up on me with penguin pillow. I need to work out the best way to have the keyboard as my tummy gets a bit sore with it poking me in my tummy, but it’s loads better than the laptop. I managed to play a bit of World of Warcraft and SimCity Social earlier, which was made possible by it not being as jerky. It also means I can get on Facebook properly again, and I’ve loads of things to respond to from the last couple of months that I’ll try and get through in the next week or so. I’m hoping to start building up my ability to watch videos and things- probably start with short YouTube videos then go from there. I’m going to have to be careful not to overdo it, but it’s massively improved my mood.

I think the hypersomnia may be calming down a bit. My sleeping pattern is completely off again because of it (hence me writing this at twenty to six in the morning) but I’m trying not to worry too much about that. It will fix itself at some point. Right now I’m just sleeping when I need to sleep, and being awake when I can. I’m still not eating enough, but managed a couple of meals of actual food (rather than just yoghurt and milkshake) and though it’s exhausting and I can’t do it everyday yet I’m hoping to build that back up too. It’s frustrating as if we didn’t have the neighbours causing so much noise I’d probably be doing better like I was the last few times I relapsed. At least I’m not right at the bottom.

We’ve had snow. Lots of it. Johan went out a couple of times but I think he doesn’t want to go too far while it’s bad. I’ve been impressed by the Sainsbury’s delivery guy for not being that late despite getting stuck somewhere else (we got a phone call telling us he’d be late, something we were expecting anyway). I’ve seen photos and when it was snowing heavily one evening Johan pulled the blind up so I could watch it properly. That was awesome, as it was lit up by the street lamps so not too bright but it was beautiful falling.

Johan is not doing great, though it could be worse. His anxiety is really bad (which is why he can’t contact the GP or anyone else) and his brain has been mean to him at times. I wish it was as easy to fix as my bad night was- we fixed mine by giving me a double dose of tramadol as it was all pain related. He’s had a few projects though which I think have helped a bit. He’s built a media centre server out of spare parts we had laying around (he bought a new case and CPU cooler from the local computer shop but that was it). He managed to get his broken monitor working again. Since he brought my computer in here and I can only have one monitor for now, he’s borrowing my desk and my other monitor and now has a four monitor setup, and I think he’s plugged into the telly as well. Things like that seem to help, even if only for the short term.

Johan is going to London to see John and Hank Green (vlogbrothers) very soon. He’s planning on going to Leeds afterwards to see his parents as he’s not seen them for far too long. Vicky is coming to stay with me while he’s gone, which is good as she’s had some experience in personal care (including bathing me when I was severely depressed) and is not someone who makes me worse. My main issue is going to be remembering not to talk to her too much as it’s tiring and accidentally spending all night chatting has happened before.

Overall I’m not as bad as I could be, thanks to ear plugs, ear defenders, and Johan. I’m frustrated that any attempt to increase my pillows fails so getting out of bed isn’t going to happen for a bit (which means the ultrasound that’s meant to happen next month is probably going to be interesting, though I’m determined to make it if I can as I need my biliary system checking). If I’m careful I can play some games, read some blogs and children’s books, and sometimes eat solid food that needs chewing. I still can’t listen to music with lyrics or anything too complicated but I’m hoping that’ll improve soon. I have loads of TV programmes to catch up with when I’m able to watch them 🙂

My penguins keep me going. Johan plays with them for me when I’m not doing great and it helps a lot. Penelope is definitely the head of the family. Penguin still loves flying and trying to get his own way (and often failing). Poseidon wants to learn about everything, and has started using Twitter. Purple Penguin is just happy about everything, and often goes exploring (usually under the bed). Po and Purple Penguin went out with Johan and got to experience snow. Po decided it was too cold (he is a baby emperor penguin and they normally stay on daddy’s feet at his age, though as it’s warm in my flat he can explore more) and Purple Penguin thought it was brilliant. I am glad they went out in it even if I couldn’t.

Danni

Language Issues

Autism, Computers, Danni, Important Stuff, M.E., Mental Health, Physical Disability, Real Life

Thanks to my ME and the brain fog and cognitive issues that come with it, I have a few issues with language that I never used to have. I forget words, muddle them up, say the wrong thing. I get a dyslexia like problem where words get jumbled up on the page and so I misread them, so my understanding of them isn’t great. It happens both with written and verbal communication, reading and writing, speaking and listening. Sometimes this is funny, sometimes it’s embarrassing, most of the time it’s frustrating.

Autism also brings its own language stuff to the table. I still take things literally when initially hearing them, though I can now “translate” most common figurative phrases into their actual meaning. I struggle to adapt what people have said to make it fit my personal situation (that caused more of a problem at college than it does now). Sarcasm is often a struggle- I sometimes understand it, and can even use it, but other times I take what is said seriously. As is often the case with autism, my ability to process language is variable day to day (or hour to hour). ME just makes things all the harder.

I love language. I like to play with it, changing words into forms that sound nice and feel nice to say, repeating words I like over and over (bananas!). Johan and I can judge each other’s moods based on how we’re using language. When I was younger I was called a walking dictionary due to my like of using new words I’d discovered that most people didn’t seem to understand and knowing the meanings of loads of unusual words, but now I stick with a vocabulary that is mostly understood by those who I want to communicate with.

How language is used interests me. As my main source of information at the moment is Twitter, I see most things in bite sized chunks (very good for a foggy brain). Some of what I see I agree with, some of it I don’t. I wanted to write a bit about it now. (I’m sorry if this isn’t very clear or coherent, I’m still waiting for a good day to happen and wanted to write it now.)

The main use of language is communication. For me, the meaning and intent of the communication is the most important thing, as although language can be beautiful in itself, it’s the communication that makes itself useful. I mostly don’t worry about the actual words used so long as the meaning gets across. There are exceptions to this. I don’t like the use of language that is used offensively to imply a group of people are inferior to others in some way (racists insults, the r-word, things like that). I do like people to determine their own language to describe themselves, even claiming back words that were previously used offensively (crip and mentalist are two that are used quite a bit by those I follow on Twitter). What I dislike most though is the use of language to exclude people.

There are a few areas where language is being discussed in the communities I’m part of. In the autism community, there’s the removal of the diagnosis of Asperger’s Syndrome from the DSM 5. I consider all those diagnosed with Asperger’s to be autistic (as it’s classified as an autism spectrum condition, and where the line is drawn between Asperger’s and autism seems to depend more on who diagnoses you than your actual pattern of skills and difficulties). There are some who disagree with this. I don’t like the term Aspie for myself, but don’t get upset when others use it. My personal preference is to be described as autistic- I believe that fits me best, as a distinction made based on my language abilities as a toddler doesn’t exactly have much bearing on my abilities as an adult. I get slightly irritated when someone describes me as having Asperger’s Syndrome (as that’s not how I describe myself) and quite a bit more irritated when someone describes Johan as having Asperger’s (as that’s not even his diagnosis) but I’m mostly irritated at those who think that having Asperger’s is better than having autism (or better than being neurotypical, or neurodivergent in other ways), as I believe that’s wrong (everyone is equal to me).

In the ME community, it’s the name itself that’s the main issue. There isn’t a universally agreed name for the illness, which sucks. My diagnosis was originally given as myalgic encephalomyelitis, but has also been described as chronic fatigue syndrome. In quite a lot of places the two terms are put together. Some doctors use myalgic encephalopathy. It has loads of other names too. Some people dislike it being called ME as it’s not obviously accurate. Quite a lot of people dislike the term chronic fatigue syndrome because it trivialises a serious debilitating illness and makes it sound not that bad. My view is I prefer ME as it is taken more seriously by doctors and is closer to describing the condition, but I really don’t have the energy to get into massive arguments about the name as I’m too busy trying to live with and try and get better from it. I meet pretty much every set of criteria for ME or CFS I’ve seen, and I know some of the issue is that some people are diagnosed with CFS who don’t have the same illness as those with ME (some of whom may have other, possibly more treatable conditions) and that’s been used to promote treatments that are harmful.

Although the name is important (as it does affect attitudes), some people seem to believe it’s the most important issue, and if you don’t agree with them you’re not good enough. I’ve seen comments along the lines of all those diagnosed with CFS aren’t as ill as those with ME (which one you get diagnosed with is more to do with who does the diagnosing) and that if you combine the two (as I do sometimes to be inclusive to those with either diagnosis) it’s the worst thing ever. It’s draining. I’m far more interested in effective treatments and a cure, as having a name that everyone agrees with, though good, wouldn’t do much to take away the pain, weakness, muscle spasms, jerkiness and other horrible symptoms I have. Using the name to exclude people from the community and possible sources of support is really sucky.

In the general disability community, there are other language discussions that come up. A big one is about person first language. That’s where you consciously say a person with <autism/deafness/etc.> rather than an <autistic/deaf/etc.> person. The claim is that it puts the person before the disability. I’ve mostly heard this from non-disabled people, but I’m sure there are disabled people (or people with disabilities) who believe this. For me, I believe this is very individual. I consider being autistic (and being disabled) part of my identity. I’ve always been autistic, and as it is a difference in my neurology it affects how I perceive the world. For this reason I normally call myself autistic, the same way I’d say I’m tall. I’m not strict with it though, and will sometimes say I have autism if it fits better with what I’m saying (just like I can say I’m blue-eyed or I have blue eyes, and both are accurate). I’ve been yelled at (by someone without a disability) for calling myself autistic before, and feel that was very much wrong as it’s my identity and they were trying to force their beliefs on me in an area which directly affects me.

I feel different regarding the ME. As it’s an illness that causes disability, rather than just a disability like autism is, I don’t see it as part of my identity. So I pretty much always say I have ME. Others will probably disagree and may see their illness as part of their identity, and that is their right and I will respect that, and will try to remember what language they prefer (and hopefully they’ll take my disability into account and be forgiving if I mess up sometimes). I know people who feel strongly both ways on person first language and other issues, but so long as everyone is respectful and agrees that what is right for an individual is determined by that individual, then all is good.

The biggest reason for wanting to write this blog post (though I’d been wanting to talk about all the above for a while) is because of some recent conversations I’ve been seeing on Twitter. Most of these are in more general equality communities (feminists and such) rather than specifically disability related, but disability politics and language is obviously involved in it. It’s regarding using language as a tool to exclude people from a community, and ultimately from equality.

The first way I’ve seen it happen is by using language that is offensive towards a group of people, while claiming to be for equality for all. I’m not going to go into any specific examples but feminists who use language that insults transpeople is an example. Now I believe that intention is a big part of communication, and this may occur accidentally. If it was unintentional, I believe the best thing to do (when it’s pointed out to you) is apologise, and try not to repeat the same mistake. Those you insulted may be angry, but I believe most people have good intentions and if you can do your best to learn from it, then it should calm down. Of course, this may also be done intentionally, because unfortunately some people don’t believe everyone is equal and some people believe that if you’re attacked the best thing to do is to attack others, in which case you’ll have a very angry group of people and hopefully the law can step in if it goes too far. I also believe you should challenge the opinion, not the person. Responding to hate with hate just makes more hate.

Now I’ll admit here that I don’t fully understand the concept of privilege as used by those in the feminist/equality community. I know that as a white, literate, disabled female in the UK I have privilege due to my skin colour, literacy, and living in a “developed” country with a welfare system, but men and those without disabilities have privilege above me cos I’m a disabled woman. I’m guessing it’s more complicated than that but I’ve yet to find an easy to understand explanation (I especially don’t understand how my privilege works regarding my sexuality, as I’m bisexual but most people assume I’m heterosexual).

That brings me on to the second way I’ve seen language used to exclude people. I’ve seen some people in the feminist/equality community use lots of jargon and terminology, and if you don’t understand it then you aren’t a proper feminist and you can’t be a good ally or whatever. That attitude excludes a lot of people. For me, it scares me from even getting involved in any conversations as I’m so terrified I might make a mistake and someone will get angry at me (and I’m not the only one who feels that way). It excludes those who for whatever reason don’t have the level of education needed to understand those terms. It excludes those with learning disabilities. There will be others as well. This is especially upsetting for me when it happens regarding disability issues as so many in the community have difficulty in using standard language to communicate to begin with. The insistence that everyone uses the same jargon (with the assumption that everyone has the ability to understand and use it) is very scary for someone with mild language and cognitive difficulties and anxiety. There are also those who play the “I have it worse than you” card, often without knowing the full situation of the other party, and believe they can never understand if they’ve not experienced the exact same difficulties. I believe that everyone is equal and want to help make the world safe and happy for everyone, no matter what differences or similarities they have, but I’m scared to do much as I’m afraid of being attacked by those who say they have the same aims as me.

I wish I knew a solution to this. There are things that could improve matters. Making information about feminism and other equality subjects more accessible for those with learning disabilities by using plain language and easy to read formats would help a little bit. Understanding and tolerance go a long way. Learning the best way to deal with bullies, fun suckers and trolls (who exist in every community, unfortunately) would help for some situations but I’m guessing that often depends on the situation.

On a personal level, I’m just going to do my best to treat everyone like a human being who deserves equality. I’ll make mistakes, but I hope to learn from them. Some of those lessons may be embarrassing and/or painful, but I hope in the long run they’ll make me a better person. No matter what, I have as much right to be here as any other person on this planet.

 

Danni

Hair Be Gone

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

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

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

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

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

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

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

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

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

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

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