Category: Autism

Danni

Acceptance

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

Guess who forgot not eating for a day and a half would also cause pain? Yeah. After a really restless night, I had some food this morning- cheese and ham and crackers. And it was fine, no pain. Yay! Also had a couple of Liquorice Allsorts and a tiny bag of mini jazzles (white chocolate discs with hundreds and thousands on them).

I was feeling a bit better so I went into the living room, and played some World of Warcraft. Did Tillers, August Celestials and Shado-Pan dailies. Also did the first half of LFR (looking for raid) which went well and was fun. No wipes, unlike Johan’s attempt on his Monk about half an hour later 😛

Had some macaroni cheese (one of my favourite foods) for lunch then was going to start on Klaxxi dailies, when the pain started again. It feels just like gallstone pain- just under my right rib, radiating outwards up towards my shoulder, and towards the centre of my tummy. I’d already had 2 tramadol (being on computer gives more pain than lying in bed, but it’s worth it) so it was just heating penguins. Heat helps, but not as much as I really need. It’s not as bad as the worst of the relapse pain, but it’s still really intense and very much not fun.

What I eat doesn’t matter. I’ve been fine with chocolate and it’s been set off with the same chocolate. I’ve had it for just eating an apple. I’ve had it from rice and chicken. I’ve had it from yoghurt. It seems to be luck whether I get it or not after eating, and most times I’m not lucky. It was the same when I had gallstones when I was 18, and I lost a lot of weight before getting my gallbladder removed (when I went to A+E with the pain the doctors asked Sammie’s granddad if I was anorexic).

I need to eat, as not eating equals death and I don’t want that. I’m not in relapse, so I get hungry and eventually it hurts quite badly itself. Tomorrow I’m going to try grazing to see if that works better (I can’t tonight as the pain is still really bad, though not quite as bad as it was when it first started). I also need to find out when my own GP is available so that I can talk to her, both about the short term and long term eating issues, as I’ve not been eating properly for over a year now and I need help to not lose weight and maybe start putting some back on again.

Anyway, none of that was what I was wanting to blog about today. I was wanting to write about acceptance.

Acceptance can be hard for me, especially with ME. I have a lot of limitations imposed by the illness, and it’s so tempting to ignore them and push through and do ALL THE THINGS!!!1! but then I get payback and maybe a relapse. I’m fiercely independent so asking and accepting help from other people is really difficult. Then there’s having to accept help from people I don’t know very well (or at all at times) which is even harder.

There are things I have accepted. I accepted using the wheelchair as I realised it enabled me to do more. I’ve accepted that sometimes I can’t talk, and that typing is an okay, if slow, substitute. I’ve accepted that I need to take painkillers to manage the pain, and that doing so actually means I have a better quality of life, rather than just saving them for when it gets really bad. I’ve accepted that I do need help in most areas of daily living, and that needing that help doesn’t make me less of an adult or a person.

I’m struggling to accept I have severe ME. When I say that to Johan he tells me to use logic. When I’m in relapse it’s easy, as at that point I’m obviously severely ill, and feel it. It’s during the slightly better times that it’s hard to accept that how ill I am puts me in that category. I’m unable to walk, but earlier this year I was able to go out in my wheelchair to Newcastle and the MetroCentre, and I went to the prom. I’m only bed bound most of the time, not all of it. I’m able to play World of Warcraft. I can watch ponies. Sometimes I can even manage a fork or spoon. These feel like really massive things to me, but then I go look at the criteria and I’m almost at the bottom. There just seems to be a giant gulf between what I can do normally and what I can do during a relapse (which is pretty much nothing other than breathe sometimes).

I feel very lucky that I’m able to do so much, even if to other people it doesn’t seem that much at all. It’s hard to accept I’m as disabled as I am. I have accepted that I’m probably looking at years to get better rather than months, but I’m struggling to accept that I’ve not really started the getting better yet as even this year I’ve declined further, though at a slower rate than before.

It took a while for me to accept I was autistic, and that some of the things I’d originally put down to being stupid or lazy were actually caused by how my brain works. It’s gotten easier over the last few years, and now I’m trying to help Johan to accept the same things about himself. Things like struggling to tidy up being caused by executive functioning problems, taking certain things literally that weren’t intended that way and the reactions I got from that, even down to accepting that flapping was okay to do (I used to grab my hand if I caught myself doing it). Interface helped quite a lot with that, as did talking to other autistic adults.

I’ve accepted that it’s okay to be me. That one was probably the most important, and it’s taken me a long time to get to that point. I used to believe that I wasn’t good enough, I was too lazy, too stupid, too attention seeking, that I must be a liar because other people couldn’t see what I was experiencing. I now know that none of that is true- I may have times where I’m bit of all of them (though I try and keep lying to a minimum and most of it is white lies or lying by omission for what I feel are good reasons) but overall I’m not a bad person. I have my faults and I want to work on them, and I’ll never be perfect, but that’s okay.

I’ve also accepted that people genuinely like and even love me. When I was depressed I believed I was completely unlike-able (and evil, and ) and that people were only pretending to like me, or that I was deceiving them and that if they knew the real me they would hate me. Depression is evil as it changes the way you perceive the world so that you can see no good, like the glass shards in The Snow Queen. After I recovered it took a while for me to see and understand how it had lied to me, and learn that it wasn’t true. I still get moments where I’ll have those thoughts and beliefs, but they’re now short lived and easy to deal with, unlike when I was depressed.

I still have a lot of work to do on acceptance, but I’ve already come a long way from where I was a few years ago. Discovering I am autistic and recovering from depression (which are linked) helped a lot. Johan and my friends did a lot too, often by just being there for me and being themselves. I have some amazing friends and family, and that makes me feel very happy and lucky.

Danni

Night from Hell

Autism, Danni, M.E., NaBloPoMo, Physical Disability, Real Life

Last night was hell. I tried sleeping through the cramps but they woke me up twice. I’m not eating again until I’ve seen a doctor as I can’t repeat that.

Communication is getting harder for me. Having to ask Johan to send even the simplest emails.

Funnily enough, my pain levels have been lower than normal (so long as I don’t eat). Been able to get away with just one tramadol at a time today.

Back is covered in spots but that’s probably due to sweating so much with the pain.

Blogging daily is hard work. Still trying, but longer posts will have to wait a while I think. Hopefully can see doctor soon so I can get things sorted.

Danni

Penguins and Ponies

Autism, Danni, M.E., My Little Pony: Friendship is Magic, NaBloPoMo, Penguins!, Physical Disability, Real Life

Still not doing great. Am completely bedbound, which sucks but it could be worse as I’m coping with sensory stuff other than touch okay. My bones in my upper leg are trying to cause pressure sores which is not fun, as I’m unable to move much, but I’m trying to prevent them. Tummy still rebelling against all food, but it looks like the kidney stuff was caused by lansoprazole as it’s clearing up and it hurts less. I have my penguins though. The heat from Penguin and Penelope helps my sore tummy/back more than my painkillers do, and they cheer me up in the process. I’ve been watching my colour changing candles today as well 🙂 I also watched the first two episodes of My Little Pony: Friendship is Magic season 3 today. It was awesome- scary and funny, with a great story, lovely songs and excellent animation. Definitely a great distraction, and I’m looking forward to the rest of the season now. I have downloaded some children’s books onto my Kindle app, and I’m hoping to be able to read them soon. They are easier than adult books and are good stories. The older ones are free on Kindle or Project Gutenburg and include some of my favourites. As holding a book is hell on my hands then reading on my tablet is better (plus I can increase the font size which helps with my blurred or double vision, that I have almost all the time). I don’t get on with audio books due to my auditory processing issues and terrible memory, so this is the best option for me. A shorter post today as I took an anti-nausea tablet earlier and it’s making me need to sleep now. Johan has a cold so I’m praying he doesn’t give it to me, and that he recovers quickly. He doesn’t sound like himself.

Danni

Being Ill is Hard Work

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

Trigger warning: talking about eating, bodily fluids and other areas of being ill

Living with a chronic illness is hard work, and exhausting. Unlike an acute illness, where in most cases you can take time out from normal life and spend time just recovering, with a chronic illness you have to try and live life around the illness.

With M.E overexertion causes payback, which is highly unpleasant (increase in symptoms such as pain, nausea and brain fog, and for me it can cause paralysis, extra spasms and severe light and noise sensitivity). Trying to balance between doing as much as possible, to enjoy life as far as I can, without it tipping into doing too much is a delicate balance, and I don’t always get it right. A common technique used by patients with M.E is pacing, which requires figuring out how much activity you can do in a day and how much rest you need. Even trying to monitor my rest and activity levels was doing too much for me, so I can’t do proper pacing. Instead I listen to my body, which is hard as poor body awareness is common in autism and affects me, but I try.

Most of the time I’m not actively thinking about being ill or trying to get better. Distracting myself from the symptoms and the illness is very important to me, and finding ways I can do that without overdoing it is worth the effort. When I’m able to get into the living room in my wheelchair and I can manage with sensory input okay, playing World of Warcraft is my go-to distraction, as the skills it requires are easy for me, I can find things to do in game even when very brain foggy, and I like being able to melt faces or heal people, even if only in game. When I’m stuck in bed but not really ill (for me) then I use my laptop to go on Facebook or maybe watch some easy TV shows on Netflix. When I’m really ill, then my penguins are often my only distraction, along with the occasional glimpses at Twitter on my tablet. Those are hard times.

There’s lots of practical things that being ill makes more difficult. I can’t walk or mobilise independently at all, other than rolling in bed (and even that disappears when I relapse). Sitting up for more than a couple of minutes is a bad idea, which makes lots of things difficult. I can’t make it to the toilet most of the time and it’s not supportive enough for me, so I try and use a commode next to my bed. Each time, I have to figure out if I’m well enough to use it, if I’m well enough to transfer independently or not, if I’m well enough to manage wiping and my clothing. As I’m fiercely independent and don’t like asking for help, I sometimes get this wrong. If I can’t transfer independently, then I fall. If I can’t sit up long enough, I faint. In both cases Johan needs to pick me up and get me back into bed, and being hauled around is quite painful as I can’t help much (or at all if I’m unconscious).

The alternative to the commode is the bedpan. There are downsides to that as well. I need Johan to fetch it for me, and help me get on it. I find it harder to use than the commode, so sometimes can be on it a very long time. As I have no strength to hold myself up, I normally end up sitting in my own waste in it, and need cleaning up by Johan afterwards.  It’s exhausting, painful and embarrassing, but peeing isn’t optional (and if I can’t pee, that causes its own problems, like possibly needing to go into hospital).

Eating while ill is also more difficult. I’m constantly nauseous, so I have to work out whether I’m able to eat at all, if I can what foods I can manage, what I fancy eating, whether I can chew properly, how well I can swallow. At the moment eating also causes severe tummy pain (feels like gallstone attacks but my gallbladder was removed 9 years ago so it’s probably not that) so I have to consider how calorie dense it is, as I won’t be able to manage much. Then I have to consider whether I can manage a spoon or fork, whether I can manage finger food, or whether I need Johan to feed me. Lots of thought has to go into the simplest of things. I do have anti-nausea tablets but they make me sleep, so I have to decide when it’s worth taking them or not.

That’s just a couple of areas where being ill make things harder. The planning that needs to go into the smallest things is tiring, and the cost of that has to be taken into account before even planning. A trip out to the shop requires about half an hour of preparation just to get out the door, due to the amount of stuff I need, sorting the wheelchair, helping me with outdoor clothing, and then getting the wheelchair out of the flat. Trips out are infrequent (and not happening at all at the moment) as they require lots of energy and brain power to plan, something which I’m rather lacking right now.

The consequences of not taking the illness into account and working around it are horrendous. Either payback, or if it’s been particularly bad or long lasting, a relapse. I’ve yet to fully recover from any relapse- every one has resulted in a loss of functioning that I haven’t got back. My M.E. was progressive anyway until this year, where it seemed to stabilise a bit apart from the relapses. A relapse is living hell- pain levels that are higher than I could have imagined beforehand (I’ve given birth and had gallstones), complete intolerance to light, sound, and often touch, often being unable to speak, and at the worst times completely paralysed, unable to communicate and hallucinating due to the pain. Some M.E patients are like that all the time, and I pray that they get some relief as I struggled with it for even a few weeks.

Of course, me being this ill and disabled means that Johan has to look after me, so a lot of the hard work goes onto him. I have to rely on him to manage my medication as my brain fog means it’s dangerous (I can’t remember if I’ve taken them or not, so am at risk of taking them again), plus I often can’t hold the tablets so he has to put them in my mouth for me. He has to deal with my toileting needs, no matter how I’m doing it. He’s the one who organises my food when we’ve figured out what I’m going to attempt to eat, who reminds me that I have anti-nausea tablets so I can consider taking them. He helps sorts my pillows and quilt out so I’m as comfortable as possible. He heats up my penguins for me to help with the pain. He holds my hand when I can’t cope with hugs. He spends time just sitting with me when I need company but can’t manage conversation. He repeats things multiple times because I lose track of what he’s saying. He contacts the doctors and everyone for me when I need them. He’s on call 24 hours a day, 7 days a week as neither of us can predict when I’ll need something. It’s as hard for him as it is for me.

Danni

Politics and Bad News

Autism, Danni, M.E., Mental Health, NaBloPoMo, Physical Disability, Real Life

Strong emotions (both positive and negative) are exhausting for me. By exhausting, I mean I get very weak, I get worse brain fog, and I need to rest immediately. Too much means I get M.E payback. As part of being autistic, I experience most emotions very strongly, and it can be harder for me to process them.

When I realised that getting emotional was affecting my health, I decided to do something about it. Negative emotions affect me more than positive, especially sadness, anger and anxiety. I used to follow the news constantly- watching 24 hour news broadcasts, being on news websites, following news on Twitter and Facebook. Since bad news makes me feel bad emotions, I started limiting how much I saw. I don’t ignore it completely, but I try to only read headlines and not get as involved as I used to. This was hard as I care about what I read, but it has helped.

Due to our current government, most political discussions are also full of bad news (to be fair, this was also the case with the previous government). I used to be very interested in politics, and was quite active for a while. Political discussions are tiring even if they aren’t emotional, as they require remembering facts, being able to explain opinions clearly, and being able to understand what the other person/people are saying and remember it long enough to reply. All things that are difficult to impossible for me now. So I’m mostly staying out of politics and political things. This is difficult as I still have strong feelings, especially regarding disability rights, and welfare benefits, but if I get too involved it makes me ill.

Many of my friends, especially on Twitter, are very active politically. A lot of them are also disabled, and quite a lot are also ill with fatigue problems. I admire them so much for what they’re able to do, and so wish I could help them out. I can do the very basics- sign petitions, retweet stuff, very occasionally blog about things, but anything more and my health has to come first. It makes me feel guilty but I’m trying to get over that.

None of this is because I don’t care. It’s because I care too much, that it makes me feel such strong emotions, that I have to step back and let other people deal with things. When I improve I really want to help out, especially for disability rights and on benefit issues (as I’m reliant on benefits myself, and exceptionally grateful for them) but until then I have to just vaguely watch and try not to feel too much. It’s hard trying to not care when hearing about natural disasters or someone who can’t afford food because their benefits have been stopped, but if I care too much I get ill, and that won’t help anyone either.

What I do need to learn to do is be more clear that I can’t deal with bad news and politics and stuff, so when people direct it at me they understand why I don’t immediately do what they ask. I’m pretty sure the Spoonies especially understand that if I don’t respond to requests to retweet this, read that, it’s not because I don’t care, but some of those on Facebook especially can be posting all sorts of causes on my wall, some of which can be quite triggering to me. I’ve had to block the Causes app on Facebook which was hard, as it’s actually pretty good.

I’d never ask anyone to change their own tweets or Facebook posts for me. That would be silly. What I do need to ask is that there’s less sent directly to me (mentions or posting on my wall). If I ignore something or remove something, it’s not because I don’t care, but because I’m protecting my own health. When I’m feeling up to it, I might get involved in discussions that interest me, but I need to be in control of them and not be dragged into them (which has happened a few times, including in World of Warcraft which should be an escape from it all really).

There is an exception- if you’re a friend and want to rant at me, feel free 🙂 I can tell friends when I’m not up to conversations, and I like using energy to support my friends. I’ve had so much support from my friends recently that I’d love to be even half as supportive back. It makes such a difference to have someone understand what you’re going through.