Category: Physical Disability

Danni

Day 11 – World of Warcraft

2019, Computers, Danni, Gaming, M.E., NaBloPoMo, Penguins!, Real Life, World of Warcraft

It seems I really needed that sleep. Once I woke up this morning (from a nightmare which wasn’t ideal) I was feeling much more like myself. Still full of cold but otherwise mostly at my normal level of functioning.

Since I was awake and kinda with it for once, I decided to go on my computer while Johan was at his volunteering. First was finishing reinstalling all the programs after the reformat last time I was on, and then I went into World of Warcraft.

In WoW at the moment there’s a 15th anniversary event going on. There’s some fun things included like revisiting old raids and fireworks, but most importantly for me is a 15% buff to reputation until January. To be able to fly in the newer areas you need to get revered (second highest) reputation with several factions, including two newer ones. I’d done all the older ones, but still had those two to do. I was able to get one of them to revered today so I’ve only got the last one now. Unfortunately my Rustbolt Resistance rep is only at friendly even after doing all the dailies I could today, so as I need to get through honoured as well it’s probably going to take a while until I’m able to fly. I did have fun with a jet pack in the Mechagon zone though.

The other advantage of being on my computer is that it’s so much easier to sort things out. I was able to get my emails sorted, buy various items that were in my baskets, and finish moving over from Chrome to Firefox. I was also able to go on video chat with Sammie for a while, which was awesome.

There was a lot of noise from the flat upstairs this morning. Banging, drilling and loud voices mostly, though at one point my lightshade was moving so whatever they were doing was vibrating the ceiling. I’m not sure if it was the council, their contractors or a new tenant moving in. Johan checked outside but the only van out there was a stairlift one, and they weren’t fitting a stairlift. I’m glad I had my noise cancelling headphones or there’s no way I’d have coped, and going on puter wouldn’t have happened.

I also changed my top today. I got a new one last week, so I’m wearing that. It says “Protect Earth – Penguins Live Here” and has a very cute penguin picture on it. I had to tell Johan not to pinch it until I’d worn it as he likes it as well 🙂

Tomorrow I think I’m having my flu jab. No idea when that’ll be, but I’m hoping it’s a nice nurse. I know it’s not going to be the awesome practice nurse that did Johan’s as she couldn’t come on a Tuesday 🙁 I’m a bit nervous but since flu was what triggered my ME I really don’t want to get it again. Having a cold is bad enough.

Danni

Day 8 – Cold

2019, Danni, M.E., NaBloPoMo, Physical Disability, Real Life

It’s still technically Friday in Hawaii, so though this post is late it could be worse 😛 I spent most of the time asleep or wishing I was asleep.

The weather has turned really cold here over the last few days, and right now it’s -1°C (30.2°F) outside. I’ve had a rough few days, and Johan reminded me that this happens every time the weather gets like this. It’s not stopping him going out running though.

Not only is the weather cold, but I think I’ve caught another one. Is it possible to have two colds at the same time? I’d not gotten over the last one yet. I can just about deal with the broken temperature monitor, the sneezing and the worsened ME symptoms, but I really struggle with a blocked nose.

What doesn’t help is my nose is generally really dry (as are my eyes and mouth), so when it does get snotty it goes crusty really quickly. This makes clearing it out difficult, especially when my hands aren’t working enough to use the saline nasal spray to make it easier.

My body also decides that instead of breathing through my mouth when my nose gets blocked in my sleep, it’ll instead wake me up telling me I’m suffocating. My sleep has been more fractured than normal because of this. I’ve been a bit of a grumpy pants and I don’t like it.

Sammie is working on a project that she’s really excited about which in turn is making me happy. Johan is working on an app to make it easier for me to communicate with the carers when I’m not doing so good. Eventually it’ll go on a spare tablet we’ve got in the hallway and I’m hoping to be able to tell them things before they come in my room. I currently have to rely on signs on my door and they’re not usually read.

I’m hoping my body lets me sleep again soon. I’ve got things I want to do and no energy to do them. Silly cold.

Danni

Day 6 – Pain Sucks

2019, Danni, M.E., NaBloPoMo, Physical Disability, Real Life

Today I was reminded of a descriptive pain scale that was going around Twitter a couple of years ago. Today is also a bad pain day. Most of the time I try and get my pain low enough so that I can try and distract myself from the worst of it, and I also have poor bloody awareness so sometimes I’m not consciously aware of how much pain I’m in though it’s still affecting how I’m feeling and what I can do. I’m one of the lucky ones who between my medication, heated blanket/pad/penguins and distraction, sometimes I can still do things.

No pain scale is perfect, but I do better with ones that describe how pain is affecting my ability to do stuff rather than in comparison to the worst pain I’ve experienced or can think of. As today is a bad day, I’ve been going between an 8 and a 9.5 on the below scale. I can’t remember the last time I was below a 6, which was when I was on IV morphine. Usually I bounce between a 7 and a 9 depending on how long I’ve been since taking painkillers and if I’ve moved or had personal care done. Pain sucks but after years of it, you learn to work with it as much as possible.

0-10 Scale of Pain Severity. Image description below.

0-10 SCALE OF PAIN SEVERITY

Severity – Description of Experience

10 – Unable to Move
I am in bed and can’t move due to my pain. I need someone to take me to the emergency room to get help for my pain.

9 – Severe
My pain is all that I can think about. I can
barely talk or move because of the pain.

8 – Intense
My pain is so severe that it is hard to think of anything else. Talking and listening are difficult.

7 – Unmanageable
I am in pain all the time. It keeps me from
doing most activities.

6 – Distressing
I think about my pain all of the time. I give up many activities because of my pain.

5 – Distracting
I think about my pain most of the time. I cannot
do some of the activities I need to do each day
because of the pain.

4 – Moderate
I am constantly aware of my pain but I can
continue most activities.

3 – Uncomfortable
My pain bothers me but I can ignore it most of the time.

2 – Mild
I have a low level of pain. I am aware of my pain only when I pay attention to it.

1 – Minimal
My pain is hardly noticeable.

0 – No Pain
I have no pain.

(Apologies for the poor formatting. I had to use Google’s image reader thingy and I’m struggling to concentrate because pain.)

Danni

Day 4 – Brains…

2019, Danni, M.E., NaBloPoMo, Physical Disability, Real Life

Today I spent most of the day asleep. Last night I managed to soak my bed lying on my drink tube, which meant needing an emergency clothing and bedding change. It took hours to get my body to calm down after that, so it’s not surprising I needed to sleep 15 hours. The first clothing Johan grabbed for me was my Christmas dress, so I’m currently wearing that. It’s very soft and has penguins on it, so I like it 🙂

I woke up just after the evening carers had left, which is a bit annoying. Sammie and Johan were chatting in our group chat. Being zombie brained I couldn’t contribute much, but I’m hoping to talk to her better tomorrow.

I have the optician coming out for my eye test tomorrow. I’m doing better with light overall than last time so it should be a bit easier. I know I’m significantly more short sighted than I was, because I struggle to see as far as my doorway. Hopefully new glasses will help this.

I still want to go out to watch fireworks tomorrow night. I’d need to be feeling a lot better than I am right how. Hopefully more sleep will fix it. Just need to do a few things first. Brains…

Danni

NaBloPoMo 2019 – Day 2

2019, Computers, Danni, Gaming, M.E., NaBloPoMo, Physical Disability, Real Life, World of Warcraft

I’m hoping to do a proper catch up post this month (mostly for future Danni’s benefit) but this week has been a bit of a rollercoaster.

The Good – This week was half term for Sammie, and she was able to come over on Tuesday which was awesome. I wasn’t up to getting out of bed, but it was awesome seeing her. We mostly just chatted and had a takeaway. I’m really happy she likes spending time with me, and that she appreciates my silliness. She’s awesome.

Also on Tuesday the physiotherapist came out to try and help with my left leg, which has decided it doesn’t want to be straight. The appointment went about as well as it could, and they gave me some exercises to try and coax it into behaving. They understood that I have to be careful about energy use so have reduced the amount I’m to do and I’m to use my own judgement about how often and when to increase them. They also said they’d ask someone about finger splints which I’m hoping will make my hands more reliable (as half my problems using them is my fingers bending backwards).

On Thursday I managed to go on my computer. It was freezing a lot when I was trying to use it, so I spent most of my time doing a reformat. It seems to have helped, though I’ve yet to reinstall everything I need. I also went into World of Warcraft and though I didn’t get the Headless Horseman’s mount this year (it’s only been 10 years of trying) I did manage to collect enough treats to get one of the Hallows End pets before having to come off.

The not so good – My digestive system really isn’t happy with me at the moment. I’m back to bringing up food a day after eating it, it’s being really crampy and generally slow, and my usual methods of sorting it out aren’t as effective as normal. When it has been moving it’s been when I’m alone so I’ve been having to ask Johan to come home which isn’t ideal. I’m hoping it sorts itself out soon.

I’ve had a cold for the past few weeks and it’s not shifting. It’s frustrating as it means I’m less able to do stuff. The worst part is my nose getting blocked when I’m asleep, and instead of just swapping to breathing through my mouth I’m woken up feeling like I’m suffocating. I can’t wait for this cold to go so I can sleep my normal level of terribleness.

I’m a bit sad I’m not well enough to go watch the local fireworks display tonight. I’ve got payback from the physio coming out and Sammie being here, so even going into the living room would be too much, nevermind outside. I really enjoyed it last year. There’s another display on Tuesday evening that’s close enough that I’d be able to go if I’m over this payback and get over this cold, but I’m probably being a tad too optimistic. Johan has gone out to the pub he usually gets breakfast from after Parkrun as the landlord is leaving, so I’m home alone tonight. I’m glad I have my earplugs.

Overall I’m still really happy, especially from seeing Sammie. Just wish my body would behave better and that chronically ill peoples were exempt from normal people illnesses like colds. I like being able to breathe.