I’ve decided to split this blog topic up into sections as its quite a large topic, also im currently not doing well so im having to limit my screen time quite substantially.
Here in the UK there never seems to be a week that goes by without an article in the media about the importance of sleep, good sleep hygiene and strange individuals who seem to be able to function on five hours or less sleep a night.
As you can tell from that last remark I’m not one of those individuals! I need at least seven hours to function the next day or more if I can possibly get it. Yet here I am at 540am writing a blog post having been awake since 330am. Oh the joys of chronic pain.
Before my illness made its way into my daily life and I just thought I suffered with a bad back and occasional low blood pressure, sleep was never a major issue. I could count on one hand the number of times from age 16 to 33 years old when I suffered from insomnia. As a teenager it wasn’t uncommon for me to be out partying until 2am grabbing a few hours sleep and then working a full 9 hour day as a shop assistant. I didn’t seem to need masses of sleep. I could go to bed late and wake up early feeling as fresh as a daisy.
In 2007 all that changed. In January 2007 I developed ptosis and all the medical opinions I sought told me I had an atypical presentation of Bells Palsy ( we now know that I’ve never had Bells Palsy and medical opinion is divided on the cause of my ptosis.) To treat the Bells Palsy I was prescribed high dose steroids for seven days. On taking them I had immediate side effect of steroid induced insomnia. I could have coped with the insomnia had it not been for the fact without sleep I had no escape from the unrelenting muscle pain in my forehead caused by the muscles sagging to the right by the ptosis. I would spend the night with a hot water bottle clamped to my forehead trying to get some relief. I had no pain medication other than paramol which is paracetamol and codiene which can be bought over the counter. It did nothing to dull the pain of what felt like the muscles in my forehead were being torn apart.
For those of you who don’t know what ptosis is or looks like I’ve posted these pictures.
The picture on the bottom shows just a very slight ( for me ) ptosis the top picture shows both eyes trying to close the left eyebrow is desperately trying to keep the left eye open. You can see the strain my forehead is under.
From January 2007 I would never know what a “decent” nights sleep would feel like again. Sometimes I feel angry about this, especially when people ( non sick) say “I feel so tired, I didn’t sleep well last night.” Or when people who don’t understand that I haven’t slept properly for seven years take the piss out of my night time routines or say “your so lucky to have slept 13 hours”. They don’t seem to realise that I may have been “asleep” 13 hours but it wasn’t a refreshing 13 hours. It was 13 hours broken up by thirteen trips to empty my bladder as I drink excessively over night. By excessively I mean at least 3 litres of fluid, if I don’t drink overnight I end up dehydrated in the morning which exacerbates my autonomic nervous system problems. On top of all those bathroom trips I will have also been woken by breakthrough pain. Since 2007 I haven’t known a night without unbroken sleep.
When researching this topic of chronic pain and sleep what became apparent is the link between poor quality / unrefreshing sleep and the increase in pain the following day. Its a cycle that repeats itself over and over. There is no simple cure to this problem.
Some people might think / suggest extra pain medications to deal with breakthrough pain. Unfortunately increasing pain medications comes with its own problems. Increasing an opiate like morphine can have the side effect of causing insomnia. So chronic pain sufferers often have the choice between broken sleep or no sleep due to increased medication. I find increasing my morphine at night causes extremely vivid dreams, I wake up feeling more exhausted than I did the night before. The dreams seem so real that I can wake up confused as to whether or not it was a dream or a memory. The confusion can last a few minutes to a few days. One dream was so vivid that I believed for a day or so that I had served in the Royal Navy. I’ve never served in the Navy or abseiled from a helicopter. In fact I’m so scared of heights I can’t climb a ladder so abseiling from a helicopter would never have happened!
Weirdly though for someone like me breakthrough night time pain serves a useful purpose. By waking me from sleep it forces me to move. With EDS my body can lock up and stick in position if I don’t move frequently. Pain can serve a useful purpose even if it is a horrible thing to go through. Sleeping solidly for eight hours ( oh I wish) ok let’s be realistic and say 1-2 hours in one position will cause me to have limited mobility for several hours after I wake up. My joints get stiff and painful and it can take a while for me to get that pain under control and get a full range of movement back into those joints.
However constant micro arousals which cause you to wake throughout the night makes the quality of your sleep decline. I’ve found with EDS that it gives with one hand ( increased flexibility, young looking) and takes with the other (pain and poor sleep).
More next time ….