Sleep and other fairy tales

When I gave up smoking (nearly 7 weeks ago) I thought I had discovered the secret of a good night’s sleep. Initially on giving up I was sleeping like a baby, I have never understood that expression as most babies I know don’t do the sleep thing! I was dropping off within 30 minutes of turning off my bedside light and then sleeping for a good 10-12 hours. It was bliss, my back hated it but I actually started to feel something I hadn’t felt in years….refreshed.

Fast forward four weeks and the problems started, I also noticed at this point how unhappy my joints seemed about staying in. The slightest thing was bringing on a subluxation or a dislocation. My feet were also regularly spasming forming almost a tight ball, imagine the top of your toes touching the sole of your foot. Initially I put it down to stress, we were choosing the new colour schemes for the kitchen and the lounge, that sort of thing will keep me up at night, worrying that I have got it right. Not sleeping or poor quality sleep always seems to effect the stability of my joints. Which is why it is so important that I get a reasonable amount of sleep of average quality. When I get neither the hours or the quality not only are more joints increasingly unstable but I also end up with increased pain levels.

I take Melatonin and an antidepressant called Mirtazapine to help me sleep and for a good year they have been highly effective. However in the last 4 weeks it suddenly feels like I have become immune to both of them. I never go to bed until I feel tired and up until about 4 weeks ago within an hour of taking those medications I would be out like a light (about 85%) of the time. So to suddenly go from them working to still being awake two to three hours after ingestion is just bizarre. It’s also incredibly frustrating.

Many doctors don’t get it when you speak to them about lack of sleep or lack of good quality sleep. This is especially true if you are chronically sick, it seems that if you aren’t working and don’t “have” to do anything due to illness, lack of sleep really shouldn’t bother you. I have had this from doctors myself, it wasn’t until I was effing and blinding, crying hysterically that my gp got how desperately at that moment I wanted and needed to sleep. It shouldn’t have come to that as I had been talking about sleep issues to my hospital consultant and gp for months. It shouldn’t have been a surprise to either of them that I was now on my knees after months ( actually years) of ineffectual or absent sleep. Now when I complain about my lack of sleep I am immediately listened to. Maybe it’s the thought of the horrid, angry, crying Myasthenia Kid turning up in the waiting room that prompts such a rapid response.

At the moment I am soldiering on, I don’t want to get involved with doctors at the moment. Especially after Julys appointment and the hemifacial spasm (or I’m a neurologist and I will make it up as I go along) diagnosis. I am fed up with the whole of the medical profession at the moment. This is quite a typical response from me after a shitty appointment, I withdraw. My confidence has been knocked and I don’t feel I could advocate properly for myself if needed. I have found when you are chronically sick you need to be at the top of your game when dealing with any medical professional or all sorts of shenanigans can take place. You know meds being withdrawn, stupid suggestions made etc etc. At the moment it is better that I ride this out, regroup and then decide what I need to do next.

The joint instability is really bugging me at the moment, yesterday I battled my left hip all day. I could feel it grinding against the socket every time I moved. It kept subluxing and then popping straight back in again. There was no particular movement which was worse than any other. This meant I had zero ways of avoiding it, other than lying completely flat, which I was not prepared to do. Not after spending so much of my life last year horizontal. Today I have had issues with slipping ribs, every time I bend forward the rib is slipping and hurting like crazy. It is a weird feeling, so now I am trying not to bend forward but sometimes you don’t have any choice.

My body is still wracked with muscle spasms and they really have got a lot worse over the last 6 months. My feet spasming have been a problem for years, it always used to happen at night when I had gone to bed. Now it happens day or night regardless of what I am doing. The spasms can be so violent they dislocate my big toe. There is nothing I can do to stop them, I just have to attempt to massage the spasm away or wait for it to pass. My thumbs are also starting to spasm and get stuck (not like trigger finger) clamped to the palms of my hands. These do quickly release by me pulling the thumb away from the palm and stretching it out. It’s a strange one and I know that it’s not helped by the current sleeping situation.

Sleep, such a natural thing to do but at the moment it seems to be nothing but a fairy tale. I’d have more chance currently of meeting three bears in my house eating porridge than having a decent night’s sleep.

* * *

Breaking news on Saturday 16th September I actually had a good night’s sleep and dropped off quickly. I will probably go back to not sleeping from tonight!

And then it went straight back to not being able to drop off and lying awake for hours in the middle of the night.