Level 31

An incomplete and out of order summary of what’s been going on the last few months.

  • I had a shower! It was awesome. It still takes way too much out of me to be able to have one regularly.
  • I went out to vote in the General Election. I like our Labour MP so I voted for him. He retained his seat (as expected as this is a very safe Labour seat).
  • I had a birthday. Turned 31. Spoke to Sammie online and played with a light up balloon. Sammie made me an awesome animation and picture 🙂 Johan got me a skirt and a penguin book. I had lots of cards and also cake a few days later. I also had other presents which were much appreciated.
  • I spent a lot of time resting. More than I’d normally do.
  • Asked the district nurse to come out. Changed Derma S to Cavilon (Derma S was causing an itchy rash, which is what it’s meant to treat) and also asked about a different mattress as pain kept waking me up and I needed to roll over, which is difficult and exhausting. Got an alternating air mattress the next day. It makes a massive difference and now I can sleep for up to two hours before waking, compared to 45-60 minutes beforehand. I also don’t need to roll over as much.
  • The reason for the resting – I went to see Sammie’s school play. Until I got the new mattress I wasn’t sure I’d be able to make it, but sleeping better and all the rest paid off and I managed to see it. Sammie had no idea I was there (she knew Johan was going) and her reaction when she saw me afterwards made it all worth it. The play itself was excellent and I got to meet a couple of her teachers. It was the first school event I’ve been able to attend so it was very special.
  • Got a taxi to and from the school. Same driver both times (he stayed on shift late to bring me home). The journey went as well as it could, but when getting out near home my wheelchair went sideways off the ramp. Luckily the driver had a really good hold on my chair and it went down slowly enough that all I got was a slightly grazed hand. Johan and the driver picked me back up and I was fine. I’m not so sure about the driver though. He refused to let us pay even though it was an accident.
  • Johan has gone to Sweden again. I’m in the same care home as last year. Johan pushed me this time rather than getting the bus as I wasn’t really well enough to travel (and the movement of the bus would have been too much) but has told me he’s not pushing me back. I got pretty much straight into bed and haven’t left it. I go home next Thursday.
  • Unfortunately being in the care home hasn’t gone as well as last year. As I can’t use a buzzer (they make a horrendous noise and can make me nonverbal) I’m meant to be checked on hourly. This hasn’t always happened so I’ve ended up with a soaking bed multiple times. The worst was Tuesday night where no-one came in from about 10.30pm (when I got my medication) until after 3am when I asked someone on Twitter to phone for me. I also ended up having a meltdown on Monday as I got overwhelmed by everything. Some of the staff are really good though. I’m going to make a complaint when Johan gets back and see how they respond before deciding whether to ask to change care homes for respite.
  • I’m really struggling with asking for things I need. Being in a care home makes this worse. I wish I could do everything myself.
  • I bought a Go Pro during the Amazon Prime Day sale. Johan is planning to use it for his runs. I’ve also insisted he goes to Edinburgh Zoo on the way home from Sweden and film the penguins for me.
  • I also bought a wifi plug socket for my bedroom in the sale. Being able to control my lights  using my tablet is so awesome I ended up getting a second one (they only let you buy one in the sale for some reason). It also means Johan can control my lights if needed.
  • I’m now struggling to manage Twitter as well as Facebook, and am struggling with games I normally find easy. I think it might be because of being in the care home. Hopefully it’ll get better once I’m home.
  • I’ve had a couple of visits while here. One brought a crochet penguin his wife made for me. They’ve really helped me cope 🙂
  • I’m hoping I’ll eventually be able to write blog posts that aren’t just bullet point brain dumps. I like writing them but my brain is being silly.
  • Penguins are still awesome. The penguin cam stopped working for a bit but Johan is at the zoo on Monday so I’m hoping to see them then.

How Is It April Already?

Bullet Point update cos easier:

  • I got my PIP award. Standard care, no mobility. I apparently only need aids and adaptations (not carers), as I can type on my tablet. I have no communication difficulties despite being non-verbal during the assessment. I can somehow walk more than 50 metres (but less than 200) despite not being able to sit upright or stand, due to being able to lift my legs from the bed once while lying down. We asked for a reconsideration, they said it was right. We’re going to go to tribunal but I’m not sure when that’ll be. I’m not surprised, and I’m glad I get enough that Johan still can get carers allowance in the meantime (as getting nothing would have messed everything up due to the way our finances work), but it’s a bit ridiculous really. The report was full of lies, and they’ve still not told me how I’m meant to walk without standing as I really want to know so I can get out of bed by myself!
  • New care agency has been sorted, and started. It’s so much better than the old one. It’s weird having two carer workers on an evening, but unless it’s a task requiring two people (basically hoisting) normally one does stuff in another room while the other does my personal care. Other than asking for one particular care worker not to come unless it’s an emergency (she’s not bad, just not really suited to me), I’ve been getting on with everyone fine, and I have a pair who are probably my favourites that I see several times a week. I also get rotas which makes things much easier, and the lunchtime call means Johan worries about me less when at his day service. It’s already saved him having to come home at least once 😛
  • We got the new day bed! Only problem is it’s a bit low down so need to find the elephant feet for it (I have some in the flat somewhere, just not sure where). I’ve been in the living room a few times, but not as frequently as I’d like for various reasons.
  • We had a power cut. I managed to report it online (I have backup internet through my phone for these occasions). My normal bed wasn’t flat but the hoists are battery powered and the new day bed is, so Johan took me into the living room when we were told it was going to be a few hours to fix it. I ended up spending the night in there.
  • Power cut told us our burglar alarm (which we don’t know how to use) is broken. When the power came back on it kept going off and it wouldn’t accept the code (the only bit of information we have about the alarm). Housing repair person came out and fixed it, then said we need to ask for a new battery. Due to the lack of people turning up to fit a new battery, I think Johan has forgotten to ask for it.
  • I survived the noise due to new earphones I bought. They’re Bose QC20s and the noise cancelling is amazing. For most noises it’s better even than the earplug/ear defender combo, and I can put ear defenders on top. Definitely not cheap at all, but considering how noise sensitive I am, definitely worth the price.
  • I’ve been out once so far this year, at the end of February. I tried to find a suitable hat, failed, but did find a visor. Bought that instead, then had dinner with Johan. Was nice, though noisy. Hoping to repeat it at some point.
  • No showers yet. Felt up to it a couple of times, but Johan wasn’t available. I’m really hoping it’ll be soon.
  • Two hair washes so far. One at the beginning of February, one last week. Had to explain to new care worker that I don’t need anti dandruff shampoo, the dry skin is just because I don’t get it washed or brushed very often.
  • Upstairs neighbours are no longer there. The circumstances were very much not good, but I’m grateful that I don’t have to listen to the arguing, music and noise anymore. They seem to be clearing the flat out today.
  • Brain is still refusing to work properly. Making silly mistakes when trying to do online shopping, and needing Johan to help me with online forms. It’s very frustrating as I used to be good at that stuff.
  • My body is still evil. I sleep a lot. I need a lot of cyclizine. Nothing much has changed there.

Games stuff separate as only I’m interested:

  • When I can get on puter, I’m playing WoW still. Loving the patch 7.2 stuff, though annoyed I miss invasions, buildings being up and stuff. Finally ran my first heroic this morning, and only only one other person died (I missed a mechanic that one shot me due to not having done the dungeon before). Maybe I’ll get those quests I’ve had for months done at some point.
  • I’ve stopped playing a lot of my mobile games as wasn’t enjoying them as much. Picked up a few replacements. Mostly playing 1010!, Fishdom, Godville, I Love Hue and Neko Atsume. Godville is the best as it’s a zero player game so I don’t need to do anything if I don’t want to (though I can do stuff to try and influence my heroine if I want). Also playing Word Cookies but Johan is so much better than me, and it overheats my tablet so it turns off.
  • I played a bit of Stardew Valley on puter, but put it on hold again until I’m caught up a bit with WoW stuff. It’s fun but I had to use a mod to make fishing much easier as it was impossible before.
  • I miss playing any first person games. I really hope they stop making me dizzy soon.

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 😛

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 respect 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 😛 (my siblings are trying hard to get it right.) My mum has called me her offspring which I quite like 🙂

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 at Nonbinary.org. 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) This Is What Nonbinary People Want You To Know (Facebook). If you know any decent resources about trans issues then please tell me as I want to learn more 🙂

Goals for 2017

I’ve decided not to set new year’s resolutions, as my health means that I’ll struggle to keep them and it might not be my fault. What I’ve decided to do instead is make a list of goals for the year, and hopefully achieve some 🙂

  • Have a shower at least once every 2 months. That would be 6 showers this year. Last year I managed 2 in 5 months (how long I had my shower chair) so will require me to work on being well enough. I’ll continue having bed baths in between and hopefully might get a bath when I go into respite (baths are amazing but our wet room isn’t big enough for one).
  • Use the toilet/commode. Around the time I became doubly incontinent, I also had to stop using the normal commode I had as I kept fainting while using it and Johan got fed up of picking me up off the floor. My current shower chair doubles as a commode and tilts, so hopefully that won’t be a problem this time. Getting me on it at the right time is going to be the big challenge, as I don’t get much notice. Even better if I can manage to use an actual toilet, but that’s possibly too optimistic.
  • Go out with Sammie somewhere. I managed this last year and would love to do it again. Preferably somewhere a bit more interesting and less wet. As I’m restricted in how far I can travel, and can’t predict how my health is going to be in advance (though resting for a week beforehand helps it doesn’t guarantee I’ll be able to get out of bed) it’ll require a lot of thought. I’m determined to do it though if Sammie wants to.
  • Create and keep to a rough daily routine. This will have to be adaptable (what I can do when in payback is very different to what I can manage on my best days) but we should have the care agency issues sorted soon (have direct payments ready to go once we’ve found an agency that can take me on) and it’ll help reduce my anxiety a lot if I know at least some of what I’m going to be doing each day. It won’t have set times (my sleep is far too erratic for that) but more guides for what to do soon after waking/once my brain switches on/after meals and such.
  • Read at least 20 books. I bought a Kindle Voyage yesterday as my Paperwhite has been missing for months and I promised myself I’d get it if I read 50 books in 2015, which I managed. The number might be lower than the last two years but that’s so I’m more inclined to read longer books. I’m not buying new books until I’ve read some of the ones I’ve already paid for unless they are personally recommended to me, but since I have nearly 1000 unread books available on my Kindle (mostly free, but a decent chunk paid) I don’t think I’ll be short of reading material for a bit. If I’m doing well with this I will increase it later in the year.
  • Sort out my clothes. They’re a mess. My drawers are full and I have piles of clothes otherwise. Many had been buried for a long time in the cupboard and were only rediscovered when Johan got the old dryer out of there. I’m going to sort through them and reduce them to what I need now (so anything uncomfortable goes) so I know what I have and what I don’t. I’m also hoping to photograph what I’m keeping so I’ll be able to pick clothes easier as I can’t remember what I have.
  • Sort out our letters. I used to have a great system for organising letters, involving an in-tray (for new ones), an expandable folder for important ones, and a box for older ones. Then I got ill, we moved to our new flat, and Johan is not organised at all. I’m hoping to implement a system I can remind Johan about so once I’ve sorted it it doesn’t get bad again.
  • Spend more time in the living room. My ultimate goal is to go in there every day I’m not in payback, and spend at least some time on the daybed. I’ve worked out the daybed we currently own isn’t suitable (I want to use an overbed table with it and there’s no gap underneath) so I’m probably going to give that one away and buy a more suitable one. The fun bit will be getting it built, but once that’s done I’ll only need to be well enough to go through there.
  • Sort out computer stuff. There is a list of computer stuff I want to sort out. Most of it is small jobs that only take short amount of time each, but together it’s quite a big job. Included in that is updating the blogroll on here 🙂
  • Go out with Johan somewhere that isn’t shopping or for a meal. Now I have my hoist and on good days can go out, I want to go somewhere with Johan. Up to now most of my trips have been shopping or meals, but I’d like to expand on that. At the moment my best times are evenings/night (I’m typing this in the middle of the night) which does complicate things, but sometimes I’m able to go out in an afternoon and I want to take advantage of that. Ultimately I’d like to manage being on a bus or taxi long enough to travel further, but until then Johan is able to push me into Gateshead and I can cope with short Metro journeys so I’m not completely stuck.
  • Create a guide to looking after me. A friend has given me a copy of their version, and I already adapted some of it for a personal information sheet that was useful when I went into hospital. I previously failed at creating a health book but with an example it’ll be much easier. I also found a leaflet on how to use my toothbrush which will also help with that.

That’s plenty of things to be getting on with. Some are bigger than others, but I can work on them slowly throughout the year. Much of my payback at the moment is due to panicking about care agency problems (I don’t know who is coming on a weekend so by the time they arrive I’m too anxious to be touched, so even if they’re nice I can’t have anything done) and the times aren’t right so getting that sorted will be a big help. Johan is doing most of that though, I’m just reminding him of what needs doing. We’re in contact with one potential agency at the moment and will be looking into others if they can’t do it, so hopefully it won’t be too long until that’s sorted. I’m also hoping to get someone to help me organise stuff and do little jobs like put proper curtains up and similar.

I’m getting over the dental surgery last week. My right side (wisdom tooth removal) is now pain free, and the left hand side (back molar removed) it’s just the jaw that’s painful if I accidentally lean on it (while sleeping) or forget and try and chew on that side. Ibuprofen is keeping the pain under control though so I doubt it’s anything serious. I’m still needing a lot of sleep and rest, but have managed several hours on my computer this evening and if I keep going at this rate, I might be able to get into my wheelchair at the weekend 🙂