Category: M.E.

I’m hoping that one day soon I get to have a peaceful day where I’m not just trying to minimise payback from activities and external events. Today was not going to be that day.

I didn’t sleep amazingly well last night, so I was hoping to be able to nap a bit this morning. That wasn’t going to happen. The council contractors arrived at ten to eight to start doing more work on the upstairs flat. I’ve got no idea what they’re doing or why it needs so much work when the last tenants were only there for a few months, but it involves drills and banging and lots of stomping on the stairs and slamming of doors.

Soon after 11am I got a phone call from Northern Powergrid on my mobile. I didn’t answer because I can’t manage phone calls. What I did do was go on the website to discover that there was a power cut in my area, including my postcode. At this point I still had power so I just carried on trying to distract myself from the noise, while also trying to get my phone and tablet charged (I had accidentally knocked my phone charger’s plug out so it hadn’t charged overnight, and the charging port on my tablet is pretty dodgy so I have to keep messing with it to get it to charge).

Lunchtime and it was one of my regular care workers, and she had a new one shadowing which I was okay with. She told me that half the street didn’t have any power, which confirmed what I’d seen online. The new care worker seemed nice and liked my care book and my penguins, so hopefully if I get her again it should be okay. Only problem is she has the same first name as one of my other care workers so that’s going to be confusing, especially as I forgot to ask for her surname.

At some point there was noise outside as well as noise from upstairs. It sounded like they were digging up the path outside my window (they were). Just before 3pm, I lost power. Luckily my phone had gotten pretty charged up by then, so I was able to let Johan know immediately. My mattress pump started complaining about the lack of power, but I couldn’t figure out what was causing the noise.

I keep a couple of torches next to my bed partially in case of this (and partially as one is also a laser pointer I like to play with) so I was able to use one to grab my battery powered penguin lights and I also spotted a load of glow sticks. I tried to find my battery pack but it wasn’t in my reach, so I grabbed the glow sticks and made a necklace, two bracelets and a butterfly toy from them. The glow sticks are a couple of years old so not the brightest now, but since my room is really dark without lights they still looked cool.

My afternoon care worker arrived at about half three. She couldn’t heat up my penguins as no power means no microwave, but she was able to sort my other stuff out using a torch. She did quickly look for my battery pack and some spare batteries for my penguin lights as they were pretty dim, but couldn’t find either. She also turned the alarm off my mattress pump which I was very grateful for.

Once she was gone I spent most of my time listening to the Bilbcast while on Twitter and playing with my glow stick toy. The noise from upstairs had stopped (I guess a power cut will do that) but the noise of digging up the path was pretty horrendous. Bilbcast on near max volume plus ear plugs and ear muffs meant I just about managed. The lack of heat (I usually have warm penguins, an electric blanket and a heat pad) meant I was starting to get cold and pain was becoming a problem, but there wasn’t much I could do about it.

Johan got home around quarter to six, and I immediately set him to finding me some warm socks and my battery pack (which was in my medicine drawer for some reason). Just as he was looking for replacement batteries the power came back on. We got confirmation via one of the workers that it was going to stay on so I got my penguins heated and turned my blanket on. It helped.

Since then Johan has gone out for a run, and via Twitter I was able to sort out getting Northern Powergrid to only send me text messages in future. I’m hoping not to have too much payback from this, but I’ve been running off adrenaline all day so we’ll see. I still have a cold and my arm is sore from the flu jab. Hopefully tomorrow will be quieter, though there’s a massive hole in the path that needs to be filled in.

Using the it’s still the 12th somewhere in the world rule as my nap turned into a full sleep 😛

Woke up on Tuesday to really loud drilling upstairs. Unfortunately I also had sleep paralysis so there was nothing I could do make the noise hurt as much. I’ve told Johan to check on me next time as he’s able to pull me out of it. I did manage to move after a bit, but I felt horrendous.

After I’d calmed down the nurse arrived to give me my flu jab. Was done quickly but made me nonverbal for a few hours. Not a major issue just annoying especially when the carer was here.

Ended up asking Johan for all my as needed meds as still felt horrible with everything from the morning. Was just about to go to sleep when Sammie messaged and I ended up talking to her for a bit. I was planning on just napping then writing this blog post but slept through to this morning.

Right now my arm hurts and I feel rotten. Probably combination of flu jab and yesterday’s sensory overload. I think more nap is needed. Hopefully there won’t be more drilling from upstairs (I can hear work being done but it’s quieter up to now). I’m hoping to wake up again when Johan gets back from his volunteering.

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.)