Its not quite 10pm and I’m laid in bed, it feels so good, it feels like the best mattress in the world but it’s not, it’s just been a very long painful day but I did get to do something I wanted and it was worth the extra pain.
I didn’t actually get out of bed until about 11am, once again I had a disturbed night once I finally got to sleep and as I woke I was greeted as usual by pain. I’m never in any rush to actually get out of bed because it’s the most comfortable place but I can’t spend all day in bed, I won’t spend all day in bed, I don’t lead much of a life but I try my hardest.
Today was forecast to be dry and so I wanted to get out in the garden and fly and tune the quadcopter that I built, its been a slow process because of pain and brainfog but it is finished and it does fly. I didn’t tell my wife how bad I was feeling today because I knew she would tell me to leave the quadcopter and rest but I wanted to take advantage of the dry day, I had asked my daughter to help get the quad into the garden and assist where needed and I knew I needed to do it sooner rather than later, if it didn’t happen sooner my pain would stop me flying the quad as the pain rises the longer I’m up and so I became impatient and moany, I know because I was told, several times.
So I sat on the patio, its painful but I couldn’t be bothered to drag the wheelchair with me as I bumshuffled out the door, I know all I need to do is ask but I rarely do. The quadcopter was flying, not very well though because I still needed to tweak the settings on the flight controller and it was very blustery out and the wind was causing me to work hard to keep the quadcopter in a steady hover. A few changes to the settings and it was easier and so it was just the wind that was causing a problem, the first battery needed changing and I did consider going back inside but I knew it would be some time until I flew it again and so I flew it again on the second battery.
Once indoors I confessed to my wife that I was actually having a bad day, I’m not quite sure she was surprised because she can always tell, even when I hide it to my best ability. I took some Oramorph and laid on the settee and washed the taste of the oramorph down with a cup of tea.
When you are in chronic pain and you’re having a bad day, it affects you mentally as well. I get mentally drained and I start struggling to find the right words, this is often a source of amusement to my family, especially when I replace a word with something way off topic.
So now all that’s left of today is the task of trying to get to sleep, this involves more Oramorph and some extra dihydrocodeine and a lot of pillows.
I can’t even remember how it feels to not be in pain, I can’t imagine laying hear without the noise of pain ripping through my body. The last time I felt no pain at all was when I was taken into hospital and they gave me a nice big dose of diamorphine, I felt its effect as it worked through my body and the last bit of pain in my feet was the last to go. It felt strange, it was so nice to be totally pain free and yet it felt so odd and unnatural, it was so amazing and yet I knew it was just a tease because I couldn’t stay on diamorphine. Sometimes I lay in bed at night and wish I had a big dose of diamorphine, just to lay here and go to sleep without feeling like this.
So goodnight, if you are a fellow pain sufferer I hope you manage to get some sleep and I hope tomorrow is a good day.