Hope we are all as well as can be expected 🙂
I can’t sleep due to pain, I’m sick of looking at my phone as no one is on Facebook or Twitter…..I usually put up a status and find other sufferers are still awake doing what I’m doing. That is a line a lot of my readers with CRPS/RSD or other medical problems will relate too, I am forever spending the wee hours of the night on my smart phone. As you lay there in pain, wondering what its like to be normal like your partner lying beside you, snoring away, I start to become frustrated and jealous of how the “normal” person can sleep with no problems at all. Now when a sufferer of CRPS is tired they don’t just go to sleep and a lot of the time never just fall asleep as the pain is too much and can’t get comfortable enough to get to sleep. These people like myself can go days without sleeping and will only then do so when our body is so tired it can’t do anything else but sleep. I’ve been there, nearly 4 days without sleep I was seeing things and hearing things that weren’t there, everything you could imagine of sleep deprivation I was doing or seeing, then my body gave in to it all and I went to sleep and slept for 18 hours, the longest sleep knowing to man! One of the questions I am most asked now by friends, family and followers on Facebook and Twitter and followers of this blog is “You get much sleep last night” or “You been sleeping Jamie”, I think most of them are shocked when I say I have had a few nights recently where I have slept no problem. The fact that I find it so difficult to sleep makes it a shock when I actually manage it!
Jen is very much a solution finder, she wants to try and make things better – she suggested I started to listen to music in bed at night to get me to wind down from the day and try to take my mind off it all. I have really never been one for listening to music, don’t get me wrong I like a song here or there, but I don’t really buy albums or go out of my way to find new bands or songs. So for the first time in our relationship (no laughing Jen) I listened to her and downloaded a few albums, I’ve found some bands that I like and with some suggestions from Jen too. On the first night I listened to one album about 4 times because I loved it, I was surprised at myself because normally I would listen to one thing then quickly move on to the next but the music was great so I listened to it again and again. That first night I had a slept reasonably OK for me, over time I have listened to music more often and at night it has become a great comfort to me when I cannot be bothered looking at Facebook nor Twitter any longer. These days I listen to music when I feel I am in more pain than other days and I am listening to a lot more variety, from Biffy Clyro to Bob Dylan, from Oasis to The Stone Roses and Johnny Cash Elvis and Willie Nelson. I am sure other sufferers do use music as a way of comfort too and to help them kind of meditate, the music now is a big part of me and my condition. If my family hear me play music, they know I’m having not such a good day even at night I have woken Jen up a few times with my music on my earphones up too loud!!
As well as the music I like to watch documentaries on almost anything from mining for gold to watching bears on BBC1. Although I enjoy watching these TV programmes, I find that my levels of concentration make it difficult. I sometimes watch the same thing over and over – finding parts of the programme I’ve missed, not understood or just not taken in. Sometimes when the pain flare is too much I can’t do anything at all. TV, social media, music – nothing can help but all I can do is ride the storm and hope for a better day.
I hope you have enjoyed my blog, remember folks feed back in the comments page is more than welcome and you can follow me on twitter @maccasixty7 .
From a sunny Bonnie Scotland have a great weekend
CRPS* Chronic Regional Pain Syndrome.