Category: M.E.

Danni

When Things Go Right

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

I woke up this morning at 4.30am, and discovered I’d forgotten how to talk. It’s now nearly 7pm and I still haven’t remembered how to.

This morning I had the hospital appointment. Ambulance transport rules say that if you have a morning appointment, you must be ready by 8.30am even if the appointment is at 11am. The ambulance arrived at about 9am, and I don’t know if it was a coincidence or someone actually requested it for me, but it had a stretcher in it so I was able to lie down 😀 We got to the hospital about 9.40am, and asked if there was somewhere I could lie down. There wasn’t, but they instead said they’d see me immediately, which they did.

My appointment went well. We got around the not being able to talk problem by me typing on my tablet and Johan reading what I was saying for me. They went through my medical history (a lot of questions were answered with “only because of my M.E.”, which was a bit scary), told me what was going to happen, had me sign the consent form, and then got me on the bed to listen to my chest and feel my tummy. It was over by 10am, and the nurse sorted out calling for the ambulance to take me home.

We again asked if there was somewhere I could lie down to rest, but they didn’t have anywhere available. However, we went to the main entrance to wait and found some comfy sofas, so I reclined (and at times lay) on there. An hour later and the same ambulance came to take me home. Because I’d only actually sat up for about 20 minutes, I was able to get up the stairs on my bum. Johan helped lift me and the ambulance woman followed with my legs.

The ambulance people were amazing. They even shut the blinds on the way back because the light was bothering me. I’m also grateful for the doctor and nurse at the appointment who made sure the appointment happened straight away and was over as quickly as possible. Because it went so well, I was in a lot less pain and felt a lot less ill than I had done the previous week. I was still very sore and didn’t feel great, but I could cope with it.

On Friday 2nd December I’m going back to get my teeth removed under a general anaesthetic. We’ve booked stretcher transport, and though they hope I’ll only be there for the day they have advised me to take overnight stuff just in case. I’m going to write a sheet with all my important information to take with me to try and help the nurses and people look after me. I’m also going to ask that Johan be allowed to stay with me on the ward, as he knows me and can help me communicate. If it goes as well as today did, that will be awesome.

Other than the appointment, I’ve spent most of the day in bed. Had a weird dizzy spell this afternoon, where I suddenly felt extremely dizzy and weird, though without any extra nausea. Not sure what caused that, or what it was about. I had a 20 minute nap and I wasn’t as dizzy afterwards. I also had a bath this evening as it had been more than a week since my last one so I was desperate. It was a new carer and it was interesting trying to get things sorted when I couldn’t speak, but she was happy to listen and to be told how we like things done. I think I like her 🙂

I’m probably going to sleep soon, as I got woken up at 4.30am by my bad tooth (it calmed down quite quickly after waking me up, luckily). It’s now getting towards 8pm, so that’s a good time to be thinking of sleep.

Danni

Brain is Stuck

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

It is hard for me to write as my brain keeps getting stuck. I hear something and have to repeat it lots and can’t stop it. I am also having problems trying to translate stuff into proper English with proper grammar.

Not sure why I am having a brain stuck day, just that I am. I will sleep soon and see if that helps.

Today I managed to rename my main character in World of Warcraft, from Danní to Danni. This made me happy. Blizzard let me have the name as someone else had used it but only for a level 1 and it had been inactive for a long time. This should make things easier for my guildies and things, and it makes me happy to be able to have my proper name in World of Warcraft 😀

I had jelly and ice cream. My mouth was being silly and forgetting how to chew, but that is not important for jelly and ice cream. It also kept breathing the food in instead of swallowing it, which is making my chest a little bit sore. I am not sure why it is being silly.

Tomorrow is hospital. I hope it is okay.

Danni

Back Problems

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

Still suffering payback, so has been a day of not very much. Pain, nausea and concentration have all been really bad today. My mood has been all over the place as well, which isn’t great. My eyes keep leaking without permission.

Anyway, Johan sorted out ambulance transport for Wednesday. It’s normal sitting up transport, so that will be fun. Oh, and we have to be ready by 8.30am, and the appointment is at 11am. Yeah. We’re going to have to ask if there’s somewhere I can lie down while waiting. This was why I got a taxi last time, but with me doing even worse than last Wednesday I need someone to carry me down and up the stairs.

My back went into spasm for a while earlier, and though the muscles have since relaxed, it’s still exceptionally painful. I wish I could get used to it, but nope.

Sleep is all over the place. Will be awake a few hours, then have to sleep again for a few more. We cancelled both carers today as they’re both ones we don’t like. That situation is just getting worse, not better.

Johan did by some Ben and Jerry’s ice cream though, and made up some jelly, so tomorrow I can have jelly and ice cream. He’s also getting his new phone tomorrow. It’s the Galaxy Nexus, which runs Android Ice Cream Sandwich. I will be having a play, though I’m not getting a new phone until I start going out again, which will be when I improve.

I’m worried that because things keep cropping up to interfere with my rest (like appointments and carers that make me more ill) that this payback may result in a full blown relapse. I’m already very ill, and I’m not sure either of us would cope if I get worse. I’ll just have to hope for the best and rest when I can.

Danni

The Good, the Bad, and the Beautiful

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

Mixed day today. Went on my computer after waking up, spent too long on there (silly Danni) but painkillers helped with the pain and was in a good mood this morning. Johan also awake early (I woke at 4.30am, his alarm went at 6.30am) as he was going to Colin’s wedding today. After spending 20 minutes persuading him to give me cuddles instead of dozing on the sofa, he gave in and we both had an enjoyable half an hour on my bed. Then he got me dressed (Diablo 3 t-shirt for the win!) and went and sorted himself out.

We hadn’t arranged anyone to look after me as I had been hoping to attend the wedding, and when it became clear I was too ill it was a bit late to ask anyone, and we also figured that as the carers would be coming and he was close enough if there was an emergency, we’d be able to cope. He left for the wedding at about 10am, when the carer was due to arrive.

She didn’t turn up. I sent Johan a text message at 10.55am (wedding was due to start at 11am) to tell him, so he could contact the agency, which he did at 11.30am (after the ceremony was finished). She eventually turned up at 11.50am, but didn’t come in, only knocked (we leave the door unlocked for the carers so they can come straight in) forcing me to crawl to the front door, and causing me massive amounts of pain. She helped me back into bed (after fetching my wheelchair from the living room) then kept asking me lots of questions, that I was in too much pain to answer. In the end I had to ask her to leave, as I was scared (I was close to melting down at this point). I asked Johan to come home, and he did, missing the wedding meal. He phoned the agency and told them we’re not happy, listing all the reasons.

Soon after he arrived back home, the post arrived, including my corset. He helped me get it on, and I was able to sit up straight for the first time in a long time 😀 It’s also beautiful, so I’m really happy with it. I’ll need to figure out lacing it, and what to wear it with, but I already love it and I’ve only worn it for 20 minutes. I may use it to be able to sit up to get to the appointment next week (which is on Wednesday, as the letter arrived today). I’m still worried about it, but the corset will at least prevent me from flopping (and it’s comfortable to lie in, as well).

I’m now planning on sleeping, but will have to ask Johan if he wants to go to the wedding party thing tonight. I’m still in massive amounts of pain, and I’m hoping for the least amount of payback from today (I’m still suffering the payback from last Wednesday- mostly more pain than normal and less stamina for stuff, and needing to rest more).