Category: Autism

Danni

Being Dependent

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

Today I’ve been rather frustrated at being so dependent on other people for most things. Woke up early in pain and as I need help taking medication (too small and fiddly for my hands) I had to wake Johan up. Then I had to wake him up again a few hours later because I needed a drink. I can only get certain things done (such as a wash or teeth brushed) when the care workers are here, and if I’m not well enough at the time they arrive I just have to do without, even if I’m feeling up to it a few hours later. My mealtimes are based around when Johan is able to make me food more than anything, unless I happen to be hungry and able to tolerate food while the care worker is here, and able to say what I want without access to the kitchen to see what we have.

I’m frustrated I can’t keep my room tidy. On one side of my bed you can’t see the floor as it’s covered in blackout sheet, curtain and pillows. Would take me about 2 minutes to pick up and put away if I weren’t stuck in bed. My pill box is missing some boxes so I can’t use it. My bedside table is covered in food wrappers and empty blister packs as they don’t get cleared up unless I’m able to ask the care workers to do it, which unless it’s a very regular worker requires explanations on where the bin bags are (I don’t get told), what exactly to do, how to open a bag without the noise making me ill, and other stuff that means it uses up most of my spoons for the day.

Then there’s the constant open questions. What do I want doing? What do I want to eat? What do I want to drink? Each one makes my brain have a mini explosion, yet I have to figure out what exactly is being asked, what answers are acceptable to give (“I don’t know” is normally unacceptable, even if it’s the truth) and how to respond so I’m understood and don’t make the person asking frustrated. I’ve tried asking for closed questions but that’s beyond most people’s ability (Johan can normally manage it, but some days he can’t and if I say I don’t know he gets anxious).

I want to do things for myself. I don’t want to be dependent on others for everything. I am technically able to get out of bed, but I can only make it as far as the floor and then need someone to help me back into bed. I’ve tried washing myself but doing so means I don’t have enough energy left to eat. There have been days where I’ve only eaten snacks because I’m too tired to work out what else I can eat. I’m losing weight again and don’t really know what to do about it, as I’m dependent on others to get the medication that lets me keep food down and maybe even digest it. I keep forgetting to take one of them.

I’m not asking for advice in this post. I know about various solutions to these problems but don’t have the spoons to put them in place right now. We’re still waiting for Johan’s support to happen, along with my hoist and other stuff. I’m normally happy and am definitely glad to be alive but it doesn’t mean I don’t get frustrated sometimes. I wish I were healthy.

Danni

Grumpy Grumpypants

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

This morning I was woken up by a firework going off around 8am. I wasn’t happy, and I’ve been a bit grumpy all day.

Yesterday I read an ebook, which was good. Independent Study by Joelle Charbonneau, which is the second book in The Testing trilogy. I enjoyed it, though it wasn’t quite as good as the first book. It took me all day, but I’m freshly happy to have managed it at all.

I’m still waiting for the payback from the hospital appointment. If I’m still about the same tomorrow, I think I’ll have gotten away with it, which would be awesome. Unfortunately waking up after not enough sleep and this stupid cold meant I’ve not been able to go on my computer today (I wasn’t well enough the few days before my appointment either). I need to do a food shop so I hope I can get on it soon as it’s much easier on there than my tablet.

Johan got an iPhone 6 and so gave me his Sony Xperia Z1 as I wanted a 4G phone for unlimited tethering (that contract isn’t available anymore so I didn’t want to change it to get a new phone). I like it and I can manage non-typing things on it pretty well. Typing is hard but doable as it has a larger screen than my old iPhone 4S (which I have to Johan for his other sim so he’s now using Apple products most of the time). I do like how fast the Z1 is compared to my Nexus 10, but that might be because I’m not running tons of junk on it yet 😛

The battery life of my Nexus 10 is noticeably deteriorating, and even with the magnetic charger it goes down as I’m using it (it used to go up), and I almost always have it on the lowest brightness setting. Once Christmas is over I might have to look into a new tablet, but I’m not sure what one I’ll get yet. I was thinking about getting an iPad as some of the apps are better, but I’m pretty invested in Android at this point and I like being able to customise it. The Nexus 9 is a possibility, but I’m not sure if losing the inch of screen size will make it harder to use (as a 7 inch was too small). I’ll have to see what’s available after Christmas.

Today I’ve not done much really. Talked a bit to Johan, then to Esther (friend/flatmate) when Johan went to Nando’s. That was really nice, and I’m glad I was able to do so. I had a wrap for breakfast (Johan bought it for me in Tesco yesterday) and risotto for tea, and my digestive system has hated me for both. They were both nommy though and all food triggers my digestive system so I might as well eat what I like. I’m very grateful for cyclizine even if it does sedate me 😛

I was wanting to write something for Autistics Speaking Day today (even though it was yesterday) but that requires more brainpower than this type of brain dump post so I’ll have to skip it this year. I’m hoping to be able to read the other blog posts written for it soon.

If all goes well I’ll have a nice long sleep tonight and I’ll be less of a grumpy grumpypants tomorrow 🙂

Danni

I Made It!

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

I actually made it to the hospital on Thursday morning. Though the ambulance was a bit late getting here it got me to the hospital and I was able to see my consultant.

It went pretty well. Travelling by stretcher meant I was able to process what was being said and with the help of my notes remembered to mention nearly everything I wanted (I missed a couple of things but they weren’t too important).
He wants me to have a tilt table test cos of my heart being silly and racing when I sit up. I need to speak to the people who do the tilt table tests to make sure it won’t make me loads worse, but I’m hoping it’ll give me an answer to a little bit of what’s going on. It’s Saturday now and I’m not experiencing any payback yet from the journey (I’m not doing great either but I’m about the same as I was before I went- silly cold) so I’m hoping that means I’m tolerating movement better. I’ll know better if I’m getting payback over the next few days.

I’m sad because it was half term this week and because of this stupid cold I’ve not been well enough to go on my computer and talk to Sammie. I managed a short time on there at the beginning of the week but it was during the early hours of the morning so she wasn’t on, and I haven’t been well enough since. I’m hoping if I’m not getting payback to try tomorrow, but if not I’ll figure something out. I also didn’t get the Headless Horseman mount in WoW again this year but since I missed most of the holiday I can’t complain too much.

I wore my penguin onesie for a short while yesterday for Halloween. Had to take it off when I overheated (which coincided with hunger making me shaky so I felt pretty rotten) but I’m happy to have worn it for a little bit. We had two calls from trick or treaters but Johan was too scared to answer the door to them and though our friend/flatmate was willing to for the second lot they’d gone before she got to the door. That’s one more than last year and two more than the year before so I’m fully expecting there to be three next year

Danni

My Body’s Crap- Can I Have A New One Please?

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

Asked Johan what I should blog about as wanting to blog, he came up with the title 😛

Being this up and down is frustrating. Johan thinks it’s because of my cold. He’s probably right. Although ME is a fluctuating illness, I’m not used to it fluctuating so much in so short a time span. I’m going from being able to play WoW on my computer to curled up in a ball hoping my body will behave or vice versa within a couple of hours, rather than the usual few days. The computer playing isn’t even the cause as there are days I’m waking up in agony and struggling to cope with anything then a few hours later I’m doing much better and can go on my computer. It’s visible to Johan and the carers as well. I don’t go on my computer every time I feel up to it but it’s an amazing distraction and is much easier to pay bills, do the food shop and stuff on there so I’m glad I can do it some of the time at least.

The main downside of this is my nausea is worse than usual. I’m having to take cyclizine more often, and that makes me dopey, and often needing to sleep. With taking it nearly everyday (and sometimes twice a day) I have no sleeping pattern at the moment, which is difficult for Johan and planning things. I wanted a wash this morning but by the time the carer arrived I was feeling very sick and in too much pain to be touched so I’ll have to wait until I’m up to it. I was doing okay (and on my computer) before that as well.

Next week I have an appointment with my consultant. Johan made all the phone calls needed yesterday so hopefully it will actually happen this time. Stretcher transport has been booked, and they’ve been informed it’s time critical and it’s been rearranged twice because of them. The clinic at the hospital know I’m coming by stretcher, are arranging a clinical room to wait in (as stretchers can’t fit in the waiting room – fine by me) and they’ll transfer me onto a bed in there, where my consultant will see me. Hopefully it’ll all go to plan, though the appointment is at 9.15am which is going to be fun. We’ve not been given a time to be ready by so I’m going to aim for 8am, with as much stuff prepared beforehand as possible.

I’ve got to think of what things are most important to discuss with my consultant. Muscle spasms are the big one, as my GPs haven’t wanted to treat it without the consultant having input. My inability to digest food in a timely manner is probably important too, as is discovering I’m more hypermobile than I thought. I’m expecting there’s not much he can do, but he’s pretty good at figuring out what’s ME and what is something else and he might have some ideas that will help. If he had any ideas to make my hands less useless I’d be so happy, but that’s probably asking too much.

I’m desperate for a shower or bath. Bed baths just don’t make me feel clean, especially since the carers don’t wash me how I want to be and I’m not well enough to go explaining it. One of Johan’s difficulties right now is he can’t print or scan anything, so even though I’ve got it typed up they can’t read it. I’m also not well enough to have my hair washed and body washed on the same day, which doesn’t help. I’m also really wanting my hair shaved off again as it’s too long, itchy and making my scalp really sore but that’s not likely to happen any time soon.

I feel like this post has been really negative. I’m still mostly happy, and I have penguins. They make everything better 🙂

Danni

Where Did September Go?

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

Bullet point update post for future reference!

  • I’ve been very up and down, mostly down.
  • Had urine infection. Antibiotics seemed to clear it up. Still have kidney pain, but that’s been going on a while now and I don’t think it’s infection.
  • Johan got PIP! No mobility, but did get enhanced care. We technically could ask for a reconsideration for mobility (he meets the criteria) but we’ve decided that it would be too much, since Johan struggled just with the application. It took about 13 months from the initial phone call to him getting the decision letter.
  • I finally saved enough money for project build Sammie a computer. I picked the parts (with help from Reddit) and Johan built it. I set most of the software up, and Johan finished it since I’d overdone it. Whoops. Johan lent me a bit of money so we could upgrade it a bit, so Sammie now has a better computer than me.
  • Sammie came to pick up the computer with her grandparents and that made me very happy. She loves her new computer, which made it worth it for me. It’s her main Christmas/birthday present (I don’t normally do joint presents but this was a very big one) but she had it early so we could play games together when I’m well enough.
  • Sorting computer and things meant I had payback. Was expected and didn’t last too long luckily. I’ve been sleeping a lot.
  • I’m due my smear test again soon. My GP is going to ask for it to be done at home.
  • I’ve been referred back to gynaecology to sort out my coil (it was meant to be changed nearly 5 years ago). For some reason instead of giving me an appointment in the hospital five minutes away, they gave me one at a clinic near the MetroCentre. That clinic can’t see people who need stretcher transport, so it’s having to be rearranged back at the local hospital. If the original appointment had been there, I’d have been sorted last year as I could still manage my wheelchair then.
  • I should be seeing my consultant at the end of the month. They’ve changed the afternoon appointment for a early morning one, which is going to be fun. This time we’re insisting the appointment is time sensitive, and also contacting the clinic to make sure they understand I can’t get there before the ambulance can get me there. They’ve told my GP they’ll see me that day anyway, so hopefully it’ll happen.
  • The last few days have been a bit bleh. On Thursday I woke up as I couldn’t open my jaw as when I tried there was horrendous pain going up the side of my face. After getting heat on it, I managed to open it where it made a massive clunk. Since then the right side of my face has been very sore. Not something I want to repeat.
  • Yesterday the neighbours woke me up arguing. I felt terrible and ended up needing cyclizine so fell asleep again until last night. My sleeping pattern is now completely broken, instead of just mostly.
  • We have an awesome friend staying for a bit until she can get sorted out. More forms and stuff to inform the relevant people, but at least we’ll get out of paying the bedroom tax 😛 I think she’s on the sofa until I buy the daybed for the living room, as despite what the government claims we don’t have a spare bedroom.
  • Johan bought me a new telly for Christmas! Because my vision is getting worse (I suspect muscle weakness from ME) I was struggling to see the subtitles on the 32″ we have, so he bought me a 50″ one. I can read the subtitles and see what’s going on now, so I’m very happy. He’s planning on going to Sweden next year.

I still feel like it’s August, but my tablet tells me it’s October. Being ill messes up my sense of time. Last time I saw my tree (I now have a blackout sheet covering my window) the leaves were turning red and there were lots of berries. Some day I’ll find out what type of tree it is.