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 😛 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 🙂

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 easily 

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 😛 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. 

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. 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 😛

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 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 🙂

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.

ME Awareness Day 2015

Today is ME Awareness Day. I was hoping to record a video, but today I’m unable to speak or tolerate much light so it wouldn’t have been very good. Instead I’m writing this blog post.

Danni in their wheelchair outside the Polling Station
Danni in their wheelchair outside the Polling Station

On Thursday I did something huge for me. I got in my wheelchair, went out, and voted. It was the first time this year I’d been out of bed other than to go to hospital. It confirmed to me that when I get my hoist I’m well enough to spend some time in it, as the only bit that was problematic was getting back into bed. I didn’t have the strength to transfer so Johan ended up throwing me on the bed. It worked, but was painful.

Over the weekend I saw friends. Rammi came up from London to stay for a few days (and see S Club 7 with Johan) and Marga and Sue visited on Saturday with their daughter and witnessed my name change (I’m now legally Danni rather than Danielle). It was awesome and I’m glad I saw them, but now I’m paying for it.

Yesterday I was awake for about 5 hours in total. Hard to tell exactly as my sleep was very disrupted by nightmares and pain. Not unusual at the beginning of payback.

Danni getting payback in bed.
Danni getting payback in bed.

Today I woke up when the carer opened my door this morning but unfortunately I had sleep paralysis so wasn’t able to tell her I was awake. Fell back asleep she left and was woken again by drilling. I already had ear plugs in from yesterday but even with them and my ear defenders on it went right through me. Not my favourite way to be woken up.

It’s hard to tell which symptoms are worst right now. I made the mistake of drinking a milkshake so nausea is really bad right now, though hopefully the anti emetic will help that soon. Lots of coherent types of pain. Muscles that feel like they’ve been overused and ache, joints that feel inflamed (though logically I know they aren’t). Skin that is both itchy and burns. Electric shocks going through my nerves, especially my arms and legs. Chest pain that’s worse when breathing. Abdominal pain worse than the gallstone pain I had. Head which is pounding, made much worse by any movement, sound or light (I’m struggling to use my tablet on minimum brightness with my sunglasses on, so am mostly using one eye). Sore throat which hasn’t femur better in over 5 years. Random spasms and paralysis to make things interesting. Unable to speak and struggling to make noise, and can’t understand most of what Johan is saying. And those are just the ones
I can figure out right now.

I’m lucky. Painkillers help me a little bit. I only get this level of illness if I’ve overdone it. For some people with very severe ME, this would be a good day. I have my tablet so can type to communicate and try and distract myself from how I’m feeling. I have hope that when my hoist arrives I’ll be able to get out of bed more regularly and build up my time in my wheelchair. For many, that’s not an option as they’re just too ill.

Even in my good days I’m in pain, have severe muscle weakness, experience more symptoms than I care to list. Spending time in my chair sent my heart rate racing, and made me feel even more dizzy despite being fully tilted and reclined. Yet to me it was a massive achievement. I’m not scared of activity, but I’m afraid of payback as if I push too far I could relapse and become more ill than I already am.

I’ve blogged before about ME. You can find some of the posts linked to above.