Not ME Awareness Day

I was planning to blog on Sunday, which was ME Awareness Day, but instead because I have ME I slept through it instead. To be honest I’m not entirely sure I would have said anyway – I’ve already said what it’s like to live with Severe ME, and that we need more physiological research. The recent NICE guidelines are a massive improvement over the old ones, but now we need doctors and hospitals to actually listen to them.

I guess I might as well do my update post instead ๐Ÿ™‚

First thing: the charity which provides my adaptive controllers, SpecialEffect, was given a BAFTA Special Award. They thoroughly deserve it, having helped so many physically disabled people be able to access games, amongst other things. BAFTA asked the games journalist Laura Kate Dale to write an article about SpecialEffect and what they do, and alongside some amazingly awesome people I was quoted in it. Still can’t quite believe that happened ๐Ÿ™‚

Below is mostly a rant, so feel free to skip it if you like. It’s mostly for my future reference. The Too Long; Didn’t Read version is that respite didn’t go well, lots of things happened, and though I’m struggling, I’m making progress on some of my goals.

Last post I mentioned I was going into respite, but didn’t know where. Eventually Izzy contacted Social Services and they found somewhere that would take me. The downside was it was 10 miles away. Izzy booked stretcher patient transport there, which apparently we could always do since I needed it? No-one told us that before. It meant I got there though, and it meant I wasn’t as ill as I could have been on arrival.

The stay in the care home did not go well, though there were a few good days when the right staff were on. The morning Izzy flew to America (I’m now allowed to say she went to the Game Developers’ Conference in San Francisco) she had to phone them at 5am to get them to help me, as I’d not seen anyone for 7 hours. They agreed to hourly checks, and even without them everyone on that floor is meant to be checked on at least every 2 hours, which didn’t happen many nights and some days. Multiple unnecessary bedding changes were needed during the stay, because I didn’t get pad changes when I needed them. And to top it off, I ended up with my first bed sore in nearly a decade, due to having a heavy plate on me I couldn’t move for several hours multiple times, and no alternating air mattress. And not giving me my prescribed painkillers when needed. I was running on adrenaline the entire time, and am still having nightmares about it.

The one big positive of the stay was it was near where Sammie lives, so I got to see her twice (would have been more if she’d not had a cold at the beginning and I was doing better). Those visits helped so much. Izzy also came between the two trips, both to try and improve my care (didn’t work) and to just spend time with me. I’ve got a photo of all three of us together which makes me happy every time I see it ๐Ÿ™‚ I also heard the owls at night, which was pretty cool.

Coming home was interesting. Izzy forgot to book the stretcher transport until a few days before I was meant to go home (while she was still in Belgium), and by that point they couldn’t do it. Then she couldn’t get a wheelchair accessible taxi booked either. This meant the only option was public transport. The first 20 minutes or so in my wheelchair I was mostly fighting to remain conscious, but eventually adrenaline kicked in enough I was aware of things and made a request: to go on a train (Metro). This technically added 6 minutes to the journey and an extra change, but reduced how far Izzy had to push me (especially uphill) and meant I got to be on a train going over a bridge, and was able to look at other bridges! That part was worth it, even if I’ve still not recovered completely.

Since getting home it’s been mixed. I crashed, as expected. The home care agency put me on a doubles round without letting us know, and having two extra people in the flat was just too much for me. We also weren’t told who was coming, and they were arriving outside the times agreed with the agency (11am-12pm in the morning, 6pm-7pm in the evening – technically my calls are at half past but with 30 minutes leeway either side). It got to the point I was panicking just thinking about it, so Izzy agreed to cancel them for a week, and also told them when they came back to only have one care worker come in.

Then I had my B12 injection, and there were two nurses for that. And because Izzy was working I had to answer all their questions by myself. Necessary (it’s started to kick in now and I can actually be awake for a few hours a day, like now) but not great in a crash. I was due to get it while in the care home, and they said they’d sort it out, but obviously they didn’t.

Then the nurses insisted I needed my mattress replacing, which was true as a pipe was broken (though the foam below is also pressure relieving, so it wasn’t an emergency). They wanted to do it the same or next day as my injection, but since there was no way I was going to be well enough we managed to postpone it until the next week, which I’m very grateful for. It meant a night in the living room and being in there with Izzy while she worked for a day. Was lovely to spend time with her, but one of her work machines is way too loud for me to be in there while it’s on. I’m glad I have a working mattress again, but I wish there was a medium pressure setting as high is a bit too high, but low is a bit too low. It’s better than none though, and it does mean I’m sleeping a bit better.

Since then I’ve been mostly trying to recover from everything, and get used to the new care workers. Having only one in definitely helps, though I don’t trust them yet. I’ve been feeling really guilty because I know how lucky I am to be getting care at all, and I feel I should be coping better. Izzy tells me I’m a silly sausage. Most of the time I like being autistic, but I do wish I were more able to cope with change and anxiety. It’s exhausting.

Izzy’s trips both went well. She really enjoyed the work event, though failed to get me any peppermint Lifesavers (not helped by having a headache the one day she had free to explore). I helped by tracking her planes and telling her where she needed to go at each airport, especially for the really tight connections. Her cruise was apparently fantastic, and she met friends and went to the zoo and saw penguins, amongst other things. I unfortunately was too ill for a video call while she was at the zoo, but the photos and videos were great. She did a bit better on presents, getting me a soft toy penguin and stroopwaffels.

A gentoo penguin. It is in the water, with the top of its head visible above the waterline, and most of its body and wings below. It is looking directly at the camera.

It has a black head with a white band around its eyes, and a beak that is mostly yellow with a black line on top. The body and upper wings are black, and the belly and under wings are white.
Gentoo Penguin in Rotterdam Zoo. Taken by Izzy Brennand

Apart from the first couple of weeks where I mostly slept, I’ve been well enough for some entertainment. I’m slowly getting back into watching my favourite Twitch streams, when the games are ones that I can deal with. I’m now up to 10 books read, so I should probably think about upping my goal there. I’ve completed three video games so far (A Little To The Left, Frog Detective: The Entire Mystery and Unpacking) so I’m really happy with that. I watched Mary Poppins Returns and Miss Peregrine’s Home for Peculiar Children while in the care home, so I’m doing well on that front too. I’ve also watched the first two episodes of Good Omens, though for some reason TV shows are still really difficult to follow. I’ll figure that out at some point, when my brain is doing better. I’m really happy I’ve been able to do as much as I have, especially since I’m still not able to move as much as I’d like.

I know I will get there eventually. I’m hoping my home care situation will improve (I’ve been offered the chance to move companies, which I’m unsure about right now but if things don’t improve with this one soon will take up). Being at home is much better than not. Izzy’s being incredibly supportive and understanding, and helping me when I’ve had nightmares, anxiety and panic attacks. I’m still able to do things and I’m even on my computer to write this, which is so much easier than on my tablet. It’ll be okay ๐Ÿ™‚

Severe ME Day 2018 – How It Affects Me

Yesterday was Severe ME Day. While the normal ME awareness stuff happens in May, today is about the 25% of patients at the severe end (though even mild ME has a massive effect on someone’s life). This blog post is late because I ended up sleeping most of the day. I previously wrote about what ME is in 2012.

I’ve had ME for nearly 9 years now. I’m not sure exactly when it became severe: I became unable to walk completely in January 2011, and by August that year I could only manage 10 minutes sitting upright before getting severe symptoms, so probably about 8 years ago. There’s different levels of severe, and I have bounced around there since then. It probably didn’t help that I had POTS already and that I had moderate ME from the start (mine was triggered by swine flu that never got better).

At this point, I’m ~99% bedbound. By that, I mean I am doing well if I get hoisted into my wheelchair once or twice a month. I’m lucky that on those days I often can get out, as my wheelchair tilts and reclines so I’m more lying down than sitting up. I also have a husband who is both strong and stubborn, and willing to push me even though there’s a lot of hills around here ๐Ÿ˜› I consider myself at the higher end of severe most of the time.

I basically need 24 hour care. My hands don’t work properly (they shake and spasm a lot, especially when trying to hold things) so rely on other people to help me with things like drinks (I mostly use bottles with tubes as I can’t lift a cup), making and cutting up my food, as cutlery and my hands tend not to get on and I’m stubborn and want to feed myself, changing my incontinence pads (as I’m doubly incontinent), managing and helping me with medication, washing and dressing me, brushing my teeth, heating my penguins for pain relief, picking up the many items I manage to knock on the floor, rearranging my cushions and bedding, and all the other little things that need doing each day. I also have no sleeping pattern so I can need help at any time of the day or night.

I have three daily calls from a care agency but the rest falls to Johan. The only reason I can be left alone while Johan is out is because of technology: so long as I can still type on my tablet, I can ask Johan to get back home quickly, or he will contact the care agency to send their on call person (we’ve yet to need this but the option means Johan can go more than 20 minutes away). If he’s away overnight, I need someone to stay with me or go into a care home (like when he went to Sweden for a couple of weeks).

Danni is in their wheelchair. They are wearing a purple shiny mermaid tail.
Danni on a good day. I went into Newcastle as a mermaid ๐Ÿ™‚

How much help I need varies depending on how ill I am. On my better days, I can go on my computer or laptop, raise the head of my bed, watch TV or play games, open the curtain a bit, and that once or twice a month outing in my wheelchair. In a weird way I actually need more help when I can do more, as I keep dropping remote controls and other stuff, drinking more (I have three 1 litre bottles for drinks, but I can get through them quickly some days), need more frequent pad changes, and help moving my laptop or helping me with my computer, and if I’m in my wheelchair I need someone to push it (and I still drop everything- if I’m an expert at anything it’s knocking and dropping items). I also need to be having a pretty good day to be able to tolerate having my clothes changed or washing more than my hands and face. Even on my best days I still feel incredibly ill, am in massive amounts of pain in my muscles, joints and nerves, have to ration my energy as I get exhausted easilyย 

Danni is lying in bed in their back. They are smiling. The image is tinted purple from a light behind the bed.
Danni on a normal day. Purple light is normal on those days as it’s not as bright as white, and is my favourite colour.

On my more normal days I tend to sleep or doze more, so Johan just needs to be able to contactable as I tend not to get myself into too much trouble when asleep ๐Ÿ˜› It’s not unusual for me to sleep for 12-16 hours, and when I am awake I use my tablet to communicate/entertain myself. Johan prefers going out for his longer runs when I’m asleep as he worries less then and he’s less likely to get an urgent message to come home (though sometimes I wake up and it happens anyway). I can usually manage low levels of light and sound with my curtain up and ear plugs in. Moving, beyond rolling over every so often to prevent bed sores, is a bad idea.

Danni is lying in bed. They have an eye mask on that also has ear muffs, a sick bag in front of them, and their left hand is resting on a penguin.
Danni on a bad day (I tend not to have photos taken on bad days. The white thing is a sick bag).

On my bad days, I can’t really move at all. I also struggle to chew and swallow, can develop a high temperature and often vomit despite my antiemetics. All my other symptoms get much worse as well, and sometimes my body decides that full body spasms should happen. This means I need someone to help move me every couple of hours to prevent bed sores, can only drink liquids, and pad changes and other personal care must be kept to a complete minimum (as even having my teeth brushed is torture). Any kind of noise or vibration is too much to cope with, so Johan has to move very quietly, can’t run the washing machine, and for him to shower he needs to make sure I have ear plugs, ear defenders and close all doors, and it still is horrible. My smell sensitivity also gets a lot worse, so he can’t have any food that is smelly like curry. Those days he has to stay in, as before I’ve ended up unable to swallow and at that point I need hospital, as though it’s the worst place for someone with severe ME drinking and medication are needed. As I often can’t speak I use my tablet if I can move and manage the light with my sunglasses on, gestures if I can’t but can move my hands, and answer yes/no questions through head movements or heavy breathing when completely paralysed.

Bad days are usually caused by doing too much, whether that’s physically (moving too much, trying to sit up for too long, travelling when not well enough), cognitively (usually talking to someone for too long, or trying to concentrate to fill in a form or for an appointment) or because of sensory overload, such as loud noises like alarms (or the care call noise), neighbours arguing and banging, a care worker wearing strong perfume or similar. I try to avoid them as much as possible, and they can last from a day or two to months.

I consider myself very lucky. I have Johan, who is the most amazing carer and just an awesome husband. I have a pretty decent care agency, and most of the care workers are good and understand things, including how variable things can be (especially that there’s a decent chance I’ll be asleep for their calls). My GP, the district and practice nurses, and the CFS team (I don’t like it being called CFS but the team themselves are decent to me) all visit me at home. My medication works well enough that most days I can cope with the pain and feeling so ill. I do have good days where I can do more or even go out. I have all sorts of awesome technology and equipment that makes things easier, from the big and expensive like the hoists, hospital bed and alternating air mattress, to the small and/or cheap like Hydrant bottles with tubes, voice or tablet controlled colour changing lights, my 12 feet U shaped cushion, and bulk bought ear plugs. We know how to manage things to reduce the amount and often the length of my relapses.

For some people, my bad days are the norm or worse. They might need tube feeding, be unable to tolerate any kind of light, sound, movement or touch, and haven’t left their bed for years or decades. Some have family or medical professionals who don’t believe they’re ill or think it’s all psychosomatic. At its worse, it can result in death, from the illness itself, complications or other illnesses that were caused by, worsened or couldn’t be treated because of the ME, and sometimes suicide as understandably, some people just can’t cope.ย 

I am thinking today of all those who have or had severe ME, especially Emily Collingridge and Merryn Croft who both died from severe ME since I’ve been ill. I am thinking of all my friends who live with this illness, and that they improve soon. I am hoping that there will be better treatments and hopefully a cure for this horrible disease, which for so long hasn’t had the research and understanding it needs, and soon.

The ME Association has an article for Severe ME Day, about two teenagers who live with it. It’s a decent website for finding more out about the illness as well.ย Press Release: Two teenagers hit by devastating severe M.E. reveal the brutal reality of life with the disease.

My Identity, Pronouns and Titles

I’ve mentioned before that I’m genderless (don’t identify as either male or female, and have no gender at all). There are other names for the same thing such as agender (which my brain automatically turns into agenda so I don’t use it) and non-gendered, but they all mean not having a gender at all. The genderless identity is part of a bigger category of nonbinary (the binary genders being male and female- nonbinary means any genders outside of that, which includes being both, in-between, or another gender altogether) and can also be considered to be transgender (not being cisgender, where your gender identity matches the sex you were assigned at birth). There are loads of different genders that people experience, and some of them have been well known for a long time in the communities they come from (such as two-spirit in many Native American cultures). Gender is separate from sexuality (who you’re sexually attracted to) and biological sex (what your body is). While I have no gender, I’m pansexual (attracted to people regardless of their gender- I sometimes say bisexual if not wanting to explain it as it’s close enough) and my sex is female (I have a female body with female sexual characteristics). I see myself as genderless, nonbinary, queer, and kinda trans (as I’m not transitioning from one gender to another, but I’m also not cis).

Learning that there were genders outside the binary and that being genderless was an option was a major thing for me. Since childhood I’ve felt uncomfortable being called a girl, though I tried to force myself to accept it as that’s what everyone else said I was. In my early twenties I privately experimented with being male (thinking since I wasn’t a woman maybe I was a man instead), but that didn’t feel right either. I didn’t (and still don’t) understand what it means to have a gender on anything but an intellectual level, and to me it’s something other people have and I don’t (in the same category as being able to identify people by their faces).

I’m lucky in that I don’t experience much dysphoria. Changing my first name from the longer, definitely seen as female version to the shorter version everyone already knew me by helped a lot. I like clothes that are perceived as masculine and feminine about the same, and mostly wear what’s comfortable (and probably purple and/or covered in penguins). Most of my clothes come from the “women’s” section as they fit my body shape best, and skirts/dresses are very practical with my set of disabilities. I sometimes don’t like my breasts, but I’m not sure how much of that is due to the amount they hurt me so for now am not planning on doing anything about them, and will reassess in the future when illness stuff has less priority. If I were to wake up tomorrow with a male body, after getting used to the change (change is bad) I’d probably be perfectly okay with it, which I gather is not the way most cis people feel. I do wish I were able to grow a beard, but there are cis men who can’t grow beards so it’s not a major thing. I accept that because I have a female body and don’t try to present as neither male nor female most people will perceive me as female (I do sometimes get gendered as male but that’s less common).

My preferred pronouns are singular they/them. Despite what some people think, it’s grammatically correct and has been used that way in English for hundreds of years, including by Shakespeare. Though these are my favourite pronouns, I don’t get upset if someone uses others when referring to me. I even have an order of preference, which goes:

They/them > she/her > him/his > sie/hir > any others > it/its.

I don’t like the pronoun it for myself as it feels dehumanising, but I know some other nonbinary people who prefer it and I respect their choice and try to remember to use it for them. I personally am terrible with pronouns, and often use the wrong ones for myself as well as other people due to cognitive issues (this is not uncommon in autism and for me has been made much worse due to ME). I find it especially difficult to use the less common ones such as sir/hir, xe/xem and so on. I won’t get upset if someone uses the wrong pronouns for me, I just feel happy every time someone uses the correct ones. I do try to use the correct ones for other people, and will apologise if I’m corrected. As for mine, even Johan gets them wrong sometimes ๐Ÿ˜›

Similar to pronouns, I have an order of preference when it comes to titles as well. That goes:

(No title at all) > Mx > Mrs > Ms = Mr > Miss

This probably seems like a weird order to some people, but it works with the way I think. Ideally, I try to get away without using a title at all (I’m really happy there isn’t one on my debit card). If I have to use one, then I prefer Mx, as it’s not gendered. If I can’t use that for whatever reason, I use Mrs as I’m married, am used to being seen as female and noticed that official people treated me with more respectย when I started using it after getting married (they shouldn’t do, but I look very young for my age and being visibly disabled doesn’t help). Before I got married I used Ms from the age of 13, as I already didn’t like Miss, and I feel it’s just as accurate as Mr is. I’ve never really liked Miss (which is why I started using Ms as a teen) and as I’m married it’s now entirely inaccurate.

When it comes to family relationships, I mostly stick to simplicity. I like spouse and partner, but don’t mind being called Johan’s wife. Sammie calls me Mum and I see it as more as a role than anything, and it’s what’s most comfortable for her. I prefer sibling to sister, but will only correct occasionally ๐Ÿ˜› (my siblings are trying hard to get it right.) My mum has called me her offspring which I quite like ๐Ÿ™‚

What really makes me uncomfortable and anxious is being referred to as a lady or similar terms, especially as a group (like saying “us ladies”). I think it’s because I know it’s inaccurate, and I’ve never really felt part of a group of women. When it’s someone I feel comfortable with I might ask them not to say it regarding me, but sometimes I’m not able to.

Like many identities, coming out is a process, not a one time thing. There are some people I’ve told (such as my social worker and people online), and some I haven’t yet (like my GP because I forgot the last time I saw her). I have to weigh up each time whether it’s worth the hassle to explain what being genderless means, and there’s the risk they will think it doesn’t exist or I’m making it up to be a “special snowflake”. I told the care home last time I was in because it would have some impact on my care (specifically being referred to as a lady or similar causing anxiety that I can’t hide while staying there) and other than the extra paperwork they weren’t expecting (as though I’d told my social worker it was the day before so after he’d last contacted them) it went really well. I also have to deal with the fact the vast majority of organisations just aren’t set up for anything other than the binary. Ideally I’d like to have identity documents such as a passport that reflect that I’m neither male nor female (other countries use an X marker for this, in place of M or F) but that seems quite a way off yet. Things are slowly improving though and I’m hopeful that in the future my identity will be more well known and accepted. On my important information sheet I used when going into hospital, I had it listed as gender: none and then sex: female, as in a medical setting my biological sex is more relevant.

Luckily, most people I’ve told have been very supportive. Johan has been amazing (the odd pronoun mistake is understandable) and is happy to support me however I need it. My social worker reacted well and asked me how he could help with it. Most of my family and friends have accepted it, even those who may not understand completely what it means. Unfortunately I’ve had a couple of people who have made it clear they won’t accept it, and that hurt a lot, but they’re in the minority. I try not to be too preachy about it, and much of the time I don’t even think about it as it’s just part of me and unless I’m filling in forms or similar, it doesn’t really affect my day to day life.

At the moment I’m not receiving any kind of therapy or treatment to help me deal with my lack of gender. Right now I’m too ill for any kind of counselling and I don’t want to even consider hormones or similar until I’m doing better. This might change in the future, and I’m looking to see if there’s an accessible support group or similar I can join in the meantime. Some people decide they need to change their body to more fit their gender (or lack of), some people are okay with how they are already. It’s hard for me to tell how much my dislike of certain parts of my body is due to being ill and in pain and whether any of it is due to a mismatch in gender and sex. Hopefully my physical health will improve enough for me to explore things further, but for now I’ll stick with my rather broken body.

All the definitions and thoughts on this post are my own, and are probably different from most other genderless or nonbinary peoples (I’m weird and have cognitive issues that mean it’s hard for me to explain what I mean). While learning about this, I used some of the resources atย I also recently saw this video which explains things pretty well (I can’t find it anywhere but Twitter and Facebook): This Is What Nonbinary People Want You To Know (Twitter)ย This Is What Nonbinary People Want You To Knowย (Facebook). If you know any decent resources about trans issues then pleaseย tell me as I want to learn more ๐Ÿ™‚

Stickman Communications: When Brain Fog Clouds My Words

I’ve been wanting to blog about the communication issues I’m having, but not been able to. Luckily* I’m not the only one who has these problems, so I can just link to Hannah’s blog post about it instead. This describes what I experience pretty well.

*I wish no-one had to experience this stuff, but I do feel a bit better knowing I’m not the only one.