Category: 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.

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

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.)