Category: Real Life

Danni

Hoist! New Shiny Toy! Yay!

Autism, Computers, Danni, Gaming, M.E., Physical Disability, Real Life, World of Warcraft

Update post in list format cos easier with broken brain 🙂

  • The big one: I’m getting my hoist! Got a phone call 10th April saying the OT was coming with a couple of contractors to measure up for the hoist. Friday 17th they did the measuring, and have worked out how best to fit a ceiling track in my bedroom and the living room (so I can lie in there during the day for a change of scenery). They need to sort who’s installing it (two different companies did the measuring, as they got to get quotes from more than one), sort the funding (which I was told won’t be a problem with how much support I have for getting this hoist) and then work out when they’re available to do the install, but I should be looking at 6 weeks or so. I’m hoping it’ll be before my birthday, which gives them about 9 weeks.
  • Apparently the best way to fit it in my bedroom is going to be diagonally from the corner next to my bed/the window to the corner next to the door. This is going to be interesting to look at 😛 (I’m not sure what they decided in the living room as I couldn’t see.) Johan helped a bit with the measuring 🙂
  • I got my sleeping pattern back to normal, then broke it again a couple of days later. This has happened several times. I’m getting a bit annoyed that I keep missing stuff because of it (not that it’s anyone’s fault, just that it’s happening).
  • I think I might be getting over the cold. Though I still have a blocked nose and I’m still sneezing, so maybe I haven’t. Or that could be hayfever. Since I have all the other cold symptoms permanently (sore throat, headache, temperature dysregulation, coughing) it’s hard to tell.
  • Had my annual review with the nurse from the GP surgery. I didn’t realise I get annual reviews but apparently I do. I guess it’s a good thing 😛 My blood pressure was slightly low when she took it, and she initially measured my pulse as 55 bpm but unfortunately that was hers, not mine (mine was 87 bpm, which is about normal for me).
  • My GP can now be contacted by email. This will be useful if I ever manage to write emails (or can convince Johan to write them). As I’m struggling a bit with my mental health and a couple of other niggly bits I’ve asked for her to come see me (nothing too major, just anxiety is more of an issue and flashbacks/nightmares are getting worse, and I not know how to cope with them, and not being sure if I have a urinary tract infection again or not).
  • GP has prescribed the supplements I need cos I’m deficient in a couple of vitamins and minerals. One is folic acid, and the pack says it’s for preconception. Is there something they know we don’t? 😛
  • We have a cleaner! She comes weekly and has already done a massive amount. OT didn’t complain about the amount of stuff we had when he came for the hoist, which was good. She’s from the council’s home help team and is starting to understand that we need help with decluttering and tidying as well as cleaning.
  • I have a care review on Wednesday 22nd. Apparently it’s going to my social worker (I have one now it seems), the care agency, the home help service, and I think there’s someone else but I’ve forgotten. Too many people. Hopefully we’ll be able to sort out the things that aren’t being done (the biggest thing is I need prompting adding to my care plan so care workers know I’m not going to be able to tell them what I need doing).
  • As my Nexus 10 is in the process of dying (and is occasionally flashing a white screen at full brightness, which is not good for me) I bought a new tablet (well, asked Johan to buy it for me) on Saturday. I was hoping to hold out a couple more months until the new ones were released, but it was getting urgent. After looking online and going backwards and forwards loads (I’ve been talking about getting a new tablet since last year) I decided on a Samsung Galaxy Tab S 10.5. The screen is a bit bigger than my old one (10.5″ compared to 10.1″) but the actual device is slightly smaller and much thinner and lighter. The only problem is it’s so light and thin it slides on the pillow when I’m trying to use it, so I’ve had to get a case to stop it 😛 I’ve upgraded it to Lollipop (it came with Kit Kat and for some reason the Lollipop update hadn’t been released in the UK yet so I did it manually) and rooted it so I could transfer all my games and stuff over. I’ve also enabled the software navigation bar as the home button (being a physical button unlike the recent apps and back buttons) is too hard for me to press frequently. Depending on how well I get on with TouchWiz I might stay with the stock rom or I might swap to something else that doesn’t have it.
  • I’m getting on my computer a few times a week now, but not always at the times I want. It’s a great distraction but that does make it easy to overdo it. It’s really good for my mental health though (which is a bit wobbly at the moment though more anxiety than anything else) and when I catch her I love talking to Sammie.
  • I’m really struggling with things like food shops, buying stuff I need (like clothes/pyjamas), and communicating with people. I not sure what to do about it. It’s taking me months to decide things which isn’t great. Autism plus ME makes things hard.
  • Our washing machine is making a lot of noise. Something (we think a bit of plastic from the drum) has fallen inside the sealed bit. We’re not sure whether to try and get it repaired or buy a new one. I’m no way well enough to choose a new washing machine, or sort out a repair, and Johan isn’t either (Esther can help with phone calls but needs to be told who she’s phoning and why).

Below is all my gaming stuff so feel free to ignore it 😛

  • I managed to get Dannila (my Monk) to level 100 in World of Warcraft. I was still in Talador (though wearing heirlooms). Now I’m questing through Spires of Arak while daisy picking, mining, surveying, logging and trying not to die.
  • Danni (my Priest) got Harrison Jones as a follower today. Yay! I’m mostly only doing garrison stuff on her right now, though I’ll do the Apexis daily if it’s one I’ve not done and I’m feeling up to it. I’m hoping to be well enough to do heroics on her soon as I’ve got all the inn quests.
  • Tiarna still doesn’t have her glyph of the penguin back so she’s levelling the slow way- through garrison missions. She’s about halfway through level 92 😛
  • I’m still playing all my mobile games. I’m not spending quite a much time on them as I was because I’m trying to spend more time on puter.
  • I unlocked everything on AdVenture Capitalist so I’m now very slowly getting more angel investors (have 2.631 duotrigintillion right now and hope to roughly double that next reset, which will probably be in a week).
  • Krystall (my character in Kim Kardashian) has climbed into the top 100 of the A list for the second time and is looking to reach the top 50 soon. I’m pretty sure I’m the only person I know still playing this 😛 I mostly like holding parties in my house in Calabasas as it gives me over a million new fans for each 3 hour party (that takes me less than 10 minutes if I’ve got all the energy I need).
  • In High School Story my school is level 19 and I’m currently partying for a Mascot guy during the day and a Movie Star guy during the night (Mascots are the only class type that’s still time based). I’m really running out of room in my hangouts even though I’ve got all three upgraded platinum as well as the type ones 😛
  • In Hollywood U I’ve completed all the quests (luckily there’s new ones each week) and I’m currently levelling all my entourage to level 15 (Danni is level 45 and most of the main characters are level 20). I’m partying for a Celeb Blogger guy then it’ll be back to partying for the elusive Fairy Tale girl. My space issues aren’t quite as bad as in High School Story but I still need to be careful not to admit too many of those I already have.
  • In Dragonvale I’m currently trying to breed a Spring dragon and a Miasma dragon. While trying for the Spring dragon I’ve bred a Double Rainbow dragon and it looks like I’m getting a second one. They’re cool but they also take 60 hours to breed so I’d rather not get too many. There’s a lot of dragons I don’t have that I can get with the combination I’m breeding with (Leap Year and Snowy Gold) so I’m hoping to get some of them. I’m a bit annoyed they released the current star fall event so soon after the Easter egg event as it means I don’t think I can get enough star dust to get even one dragon (though I’m hoping I’m wrong). I should get the Walk of Stars (which is a pretty path) today, hopefully.
  • I’ve got spreadsheets for High School Story, Hollywood U and Dragonvale to keep track of what students and dragons I have and what ones I’m partying/breeding for. I spent far too long one night setting them up with all sorts of formulae to get it working how I wanted 😛
Danni

Coping with a Fluctuating Illness

M.E., Physical Disability, Real Life

ME is a fluctuating illness. Sufferers have good days and bad days, good hours and bad hours. For those a bit further up the functioning scale, the fluctuations are pretty easy to see. On a good day random ME person can go out and do stuff (how, what and for how long will depend on how their ME affects them, but I’m thinking out of the house). On a bad day that’s just not possible, and for anyone with moderate to severe ME a bad day can mean being unable to get out of bed.

I bounce around the bottom of the functioning scale (there’s actually several, all measuring slightly different things, but I’m at the bottom of all of them). To an observer, there’s not that much difference between a good day or a bad day. On a good day, I’m stuck in bed, incontinent, and reliant on 24 hour care. That’s still true when I have a bad day. To me though, there’s a massive difference, even if it’s only a percent or two on the actual scales.

On a good day I need the light reduced as I’m photosensitive. I can’t tolerate moderate to loud noises, and my body floods with adrenaline if the phone rings or the doorbell goes (even with all the doors shut). Sitting up will make me faint, and if I move too much my pain levels increase massively and my muscles become weaker. My muscles spasm, my limbs randomly jerk, and I’m experiencing too many other distressing symptoms to list. What I can do is speak, prop myself a bit up using the bed, manage my lamp to provide enough light to see by, my normal glasses while looking at my tablet (on minimum brightness) and the big one, go on my computer. This means I can communicate as easily as is possible for me, and I can talk to my daughter, Sammie.

Using my computer I manage our finances, do food shops, use Skype (to talk to Sammie), attempt to use Facebook to keep up with my friends and family, research whatever I need to research at the time, buy stuff, and play games to distract myself from how horrendous I’m feeling. I can’t manage it every good day (on other good days I’ll have a bed bath, change my pyjamas, and occasionally have visitors instead) but I really appreciate it when I can. It makes a massive difference to how I feel. On very good days (which are rare, maybe a couple of times a month if I’m lucky) I’ll be able to try watching a TV programme or a film, have lots of hugs (physical contact is painful) and do more work on trying to sit up without fainting. If transfers were possible (I need a hoist which I don’t have yet) good days would mean trying to get into my wheelchair, and very good days I could attempt to have a shower (using a tilt in space reclining shower chair, which has been approved but I don’t have yet, like the hoist).

Bad days are different. The computer is completely out. I need sunglasses to tolerate the lamp for pad changes and other personal care, and need it off otherwise (even with sunglasses on I can’t manage it for too long). My tablet becomes my lifeline to communicate, but I can only use it in short bursts then I have to rest. Thinking is extremely difficult and I can’t distract myself from the overwhelming pain I’m in. Communication becomes harder, as I can lose speech (or be too exhausted to speak – both happen), typing is very difficult, and my concentration and memory become very unreliable. All my symptoms become much worse, having basic care (such as pad changes) done is almost unbearable (and kept to an absolute minimum) and I often lose the ability to chew and swallowing is very difficult so I mostly live on milkshakes. I also experience random bouts of paralysis- sometimes just my arms or legs, but other times I’m unable to move any part of my body, which is terrifying no matter how many times I experience it. If I’m lucky it’ll only last a few minutes, but it has lasted days before.

I’m scared of bad days. I know some of the main triggers that are likely to cause them, and so I do my best to try and avoid them. It’s not always possible though and a lot of the time it’s out of my control. How well I am can change within hours or even minutes – sometimes getting better, but usually getting worse. Doing too much and being overwhelmed are pretty reliable causes of a bad day, yet I’m not always able to judge how much I’m able to do at any time without experiencing payback, and if the neighbours are fighting or a car alarm goes off I’m likely to have a period of relapse through no fault of my own (I can cope with relapse better if it’s because I’ve done something I wanted to do).

Due to how ill I am when I’m having a bad day, on good days I don’t feel like I’m that ill. I forget that most people with a severe disability or chronic illness are still able to manage more than I am, and see myself as more moderately ill than severe. If I hear that someone is so ill that they’re only able to get out of bed to go to the toilet, I think they’re more ill than I am, forgetting that I’m not even able to do that. One of Johan’s jobs is to remind me of what I am capable of, and also what I’m not (as if I try to do something I’m not able to do, I’m pretty much guaranteed to relapse). Since confusion and cognitive issues are part of my illness, I sometimes forget that I can’t walk, that I can’t sit up, and try to do so anyway (which never ends well). The cognitive problems can be some of the scariest, and unlike pain and nausea there’s no real treatment for them and unless you know me well it’s not always obvious how with it I actually am. At it’s worst I stop being able to understand language at all, which is scary when someone is talking to me and I have no idea what they’re saying.

It’s taken me a few weeks to write this blog post. I knowingly overdid it yesterday so am starting to pay for it now, but since it was talking to Sammie it was worth it. I’m hoping the payback won’t be too bad, and I’ll come out of it quickly. I’m grateful that even through the bad days I’m able to stay happy, and I have people who love me. Though it’s not always a good thing, I’m also grateful I’m able to forget how ill I am when I’m having a good day for me, as it makes life much more bearable. I’m hopeful that in time I’ll improve and what’s a good day now will be worse than my future bad days 🙂 I’m also very aware that there are people with ME for whom my bad days are their good days, and I really hope that they are able to get better.

Danni

I Have a Heart

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

That’s a pretty good thing, since it’s a tad hard to live without one. Update post for future reference!

  • Been rather wobbly the last few weeks. Catching a cold hasn’t helped. Could be worse, but frustrated not been able to go on puter and stuff as much as I’d like.
  • Asked several different people (including different departments of council and housing company) to try and get help with tidying and asking why I not got a hoist yet. Everyone is shocked I don’t have one yet. Hopefully will get somewhere with something?
  • One of our neighbours keeps spending money on things they’re putting in the communal areas that they’ve not got permission for. At least one of them they’ve been told not to do before. Housing officer going to investigate, and also make note on case about noise (as it’s still a problem).
  • Saw new consultant about probable POTS on Monday (the 9th). Current conclusion is I probably have POTS 😛 Luckily she saw straight away that I’m too ill for the normal tests (they require standing, and I’m unable to sit for any real length of time) so she wants me to measure my heart rate daily for a bit, is asking the CFS team to see if they can help with that, and I might need to have a 24 hour monitor at some point. Then we’re going to try medication to see if it helps. Luckily she gets ME really well (which is good, since she researches it as well as POTS) so we skipped straight to the stuff I was able to do. She even checked I was okay to have my blood pressure taken (it was, and it was normal, as it usually is when I’m anxious- when I’m not it’s usually a bit low).
  • Didn’t have any major problems with getting the stretcher ambulance organised, which is a first. They did say at first they wouldn’t be able to get a stretcher in here but they managed it in the end. This stretcher was comfier than the last one.
  • Since I’m meant to be measuring my heart rate regularly, I treated myself to a new fancy oximeter (easiest way for me to check, plus helpful for when I’m breathless to see what’s going on). Need to read the destructions to check how to use the recording and uploading to puter features, but I’ve had a bit of a play since it arrived yesterday evening.
  • When I feel my heart doing funky dances it shows as an irregular heart beat on the monitor. I’m pretty sure it’s nothing serious, but it’s reassuring to know I’m not just imagining it.
  • My heart rate goes all over the place. At my normal kinda rest, it goes between 80 and 105 bpm. My normal oxygen level is between 90-98% (I’ve turned the alarms off on this one, as the old one used to go off whenever it got to 93% or lower). I’m guessing at least some of the lower ones are due to bad circulation. I’ve not been breathless with it on yet.
  • Things that increase my heart rate are moving, holding Johan’s hand, increased pain, talking and farting. Also trying to take deep breaths increases my heart rate to over 100bpm and reduces my oxygen level down to about 90% consistently, which I think is the opposite of what’s supposed to happen.
  • Things that reduce my heart rate are thinking of penguins, lying quietly, and holding my breath (which doesn’t reduce my oxygen level until after a minute). Explains why I hold my breath during a panic attack (and with the above, why being told to breathe makes things worse).
  • Random fact: before I got ill I used to practice holding my breath for fun. At my best I could manage nearly 5 minutes, and just before I got ME I could manage 3 1/2. I’m still able to hold it for 45-70 seconds before I start feeling like I need to breathe. I used to scare people with it 😛 I thank my larger than average lung capacity and singing lessons.
  • I managed my puter for a little bit last night. Managed to sort my budget for the month and then went into World of Warcraft, where I died a ridiculous amount of times trying to do a Harrison Jones daily. I didn’t even manage to complete it before the daily reset 🙁 I’m hoping when it shows up again it’ll skip to where I was, but I’ve got a feeling I’ll need to start again. It’ll be easier if my brain is working better though.
  • Sleep has been excessive and random. I don’t have any kind of pattern to it. With having a cold though I’m just going with it, though would like to be awake when the care workers are here more often. Trying to force it though makes me more ill, as does waking me up when I’m not ready.
  • I have had my bedding changed and hair washed, though I really regretted the latter as it made me feel horrendous. I wanted it clean for going out though. I had my own pillow and duvet on the stretcher which was good as it was freezing outside (and I got to see some frost).
  • Communication is still an issue. I need to be well enough to figure out how to teach the care workers to communicate with me when it’s difficult. Asking them to offer me suggestions of what they can do and not ask me what I want doing hasn’t worked.
  • I’ve had some grumpy days recently, but I think most of that is due to having a cold (plus running out of chocolate when I was craving some). I’m still happy most of the time though 🙂

I hope everyone is doing as well as they can be. I think seeing outside my bedroom will keep me going for a bit 🙂

Danni

Things and Stuff

Autism, Danni, Gaming, M.E., Physical Disability, Real Life, World of Warcraft

So I had a relapse. Luckily a short one (only a couple of weeks) but it was a hard one. Lots of paralysis, loss of speech, extreme sensory sensitivities, difficulty chewing, moving and swallowing. Not fun.

I think I have to accept I’m not improving as fast as I hoped. Watching telly and playing Minecraft are too much for me at the moment. The second one hurts as it’s something I like to do with Sammie, but the movement makes me dizzy and more nauseous. I’ll have to think of something else we can play together, though for now we just talk while she plays games on her computer and I do whatever.

Urgent things on the to-do list are a hair wash and bedding change. I only want to do it with a carer I trust as I’m still not quite back to where I was. I really desperately want a shower but no hoist or shower chair makes that impossible. I had a bath last June in the care home but I really need something a bit more frequent than that. Bed baths just aren’t the same and I have a build up of dry skin on parts of my body again (there is a rule at the care agency that they’re allowed to apply makeup but not creams. I have no idea why or what the logic behind this is).

I admitted on Tumblr I’m not sure that I’m a cis (not trans) female. I know I’m not male but also don’t feel female, though do like being feminine sometimes. Since I learnt that gender isn’t a binary I realised that just because I’m not male it doesn’t automatically make me female. I think I need to do a bit of exploring in that area. I’m not particularly bothered about pronouns (though male ones do make me look at you weird) and Danni is pretty gender neutral anyway so there’s not much to change. Just something for me to sort out. I’m going with genderqueer or gender questioning for now. (My sexuality is still the same- I’m bisexual/pansexual, depending on definition, as I’m attracted to those of all genders and of no gender. Gender just isn’t a big thing to me.) Identity is important and interesting.

It’s funny but the thing I missed most during the relapse other than talking to Sammie was playing World of Warcraft. I missed the end of the Love is in the Air holiday (so didn’t get all the achievements I wanted) and most of the Lunar Festival. Patch 6.1 has come out and I’ve no idea what I’m doing. I’m still not well enough to do much in game so it’ll take me a bit to catch up I think.

We’re finally getting some of the old furniture out and next week we’re getting the daybed. Esther will have a proper bed to sleep on (we already have the mattress but the sofa is in the way). When I eventually get the hoist sorted I might be able to spend time in another room!

What has been keeping me sane the last few weeks are tablet games. I’m currently playing High School Story, Hollywood U, DragonVale, Kim Kardashian Hollywood (I feel like the only one still playing this), Sudoku and now AdVenture Capitalist. Simple games that require little brain power or movement but keep me entertained. I’m hoping as I get back to where I was I’ll be able to play more complicated ones. I’ve also restarted playing Draw Something as it’s fun.

Communication issues suck. We need a better system to get things done when I’m not well enough to do them (especially food shops). Brain power not good enough to manage to figure this out yet. I need an advocate for health/care stuff, but don’t know how to get one.

Grah. Sometimes I wish life were easier. At least I have people who love me and care about me. It helps a lot 🙂

Danni

Understanding Others

Autism, Danni, Real Life

Understanding other people is something I’ve had to work on for a long time, since I first realised that others weren’t just like me. It’s still something I struggle with, but so long as I’m aware of it I normally do okay.

My default position is that I am average human being (or penguin). I know that in reality I’m pretty far away from average, but it’s an automatic thing. The easiest part for me to understand is that others have different interests, as my own have changed as I’ve gone through life. When I was little I wasn’t obsessed with penguins, but wanted to learn everything about different subjects (such as living in Victorian times). I’m still interested in that type of history, but it’s no longer all consuming as it was then. It’s easy for me to understand that I might not like watching soaps but that others are, and my need to know everything means I’m genuinely interested in what others like and want to talk about, even if I’m not particularly interested in doing said thing (like watching soaps).

It gets more complicated when it comes to life experiences. My childhood was pretty different from the average British kid growing up in the 90s. Although I shared a lot of the same cultural heritage (watching most of the same TV shows and reading the same books), I had domestic violence, homelessness, living with alcoholic and mentally ill parents and other stuff that most people didn’t experience. Add to that being autistic so the way I think is different and my perceptions of life and events are processed differently and it’s no surprise I was seen as weird and odd, though I didn’t realise it until I was 8 (and didn’t know why until I was about 20). I’m still learning that average British person of my age probably knows of Noel’s House Party and Gladiators like I do, but doesn’t know the fear that you might have to leave home unexpectedly or that the scariest thing in the world is adults screaming at each other.

Once I’ve thought logically, I know think people are not like me unless they show they are. What I think or feel in a certain situation is probably going to be different from how I feel, and therefore respond. It’s a conscious process though, as by default I think they will be like me. Johan is very similar to me in personality and thinking style, so in most cases how I will think, feel or respond in a situation is often the same as how he’ll respond, and because I know him very well I also know when he’ll respond differently. My sister Meggy (who isn’t autistic) had a similar upbringing (though with more foster care than I had) but is closer to neurotypical than I am. We often respond in completely different ways to the same situation because of this, and that’s okay. It just means I find it harder to predict how she’s going to respond, though as she’s my sister and I know her pretty well I have a better idea than for a stranger. My other siblings (Becca and Martin) are somewhere in between, as is Sammie.

My autistic and neurodivergent friends are all over the place. Some are very similar to me in many ways, some are basically the complete opposite (they can be just as far away from average, but in the other direction- like I might respond to something by withdrawing into myself and becoming silent, but they’d respond by shouting and being loud). Many of my autistic friends are similar in some ways and different in others. I have friends who absolutely love and crave really loud music, whereas I cannot tolerate it. In general I do better understanding those whose neurotype is close to mine, which includes people with learning disabilities and things like dyslexia or ADHD as well as autism (and some autistic people I struggle with as theirs isn’t like mine). I do have neurotypical friends (and some of them aren’t disabled in other ways) and I have difficulty understanding them, but I’ve put extra effort into trying as they make up most of the population and I don’t want to get it wrong.

Difference is good and I love it, but it does make understanding how people will react to stuff difficult. On a more individual level, I also don’t always know what topics are appropriate for different people- I’m getting better at it but unless I’m told someone doesn’t want to talk about something then I’m not necessarily going to pick up on any non-verbal cues to shut up (though I can read autistic and other neurodivergent body language much better than neurotypical body language in general). Some of the difficulty is because of my childhood (what was normal for me wasn’t the norm for others) but most is just because of how I think differently. The difference in processing things is a factor as well- generally I pick up on sounds, smells and other sensory input much more than others, and it doesn’t take much for it to become overwhelming. That’s got worse since I became ill, but it was there beforehand as well. As a kid I couldn’t figure out why I was getting overwhelmed (so didn’t think to do things like cover my ears or wear sunglasses) and it made my tolerance for things much worse so I’d become aggressive (mostly verbally). I also would have massive meltdowns without knowing what they were. When I was a teen I stopped taking it out on others and turned it more on myself, and shutdowns became more common than the meltdowns did. I don’t hit people who touch me unexpectedly now, though still don’t like it. I’m more likely to bite myself when overwhelmed by panic or in overload.

One thing I wish though is that understanding other people wasn’t all placed on me. I’m expected to act as if I’m neurotypical, and many neurotypical people react badly if I don’t. I’m expected to just understand social situations and body language that isn’t natural to me, yet others aren’t expected to understand me, even if I try and help by explaining what I’m thinking or experiencing. My communication difficulties (which are mostly hidden as my speech is normally fluent) are dismissed as I can appear normal, and it makes life more difficult than it should be. It’s especially upsetting to me that some people who are paid to help me refuse to try and understand my needs, yet I’m expected to understand theirs. It’s scary and makes me afraid to even try. When they do make the effort it’s really good, I just wish it were the norm.