Exhaustion is pulling on me badly today, it has that all too well-known feeling that I am being dragged down into a need to sleep so strong that it’s hard to ignore. Since I wrote the post on fatigue the other day, I realised that I am as guilty as a million other people with chronic illness of just saying “I’m tired” or “I’m exhausted”, when the truth is it’s all fatigue, having said that, when it comes to the word exhaustion, that I don’t use so much, that really is a combination of real tiredness and fatigue combined, so sleep helps just a little. If I am being honest with myself, anyone would have found the last week exhausting, there is nothing more exhausting than intensely felt and worked through emotions. I have been left feeling weakened but oddly good, as so much has been worked through that I know things are going to be better for both Adam and I, it’s just going to take a little time.

Right now though I have just one thing on my mind and that is the constant pain and discomfort I have spread over the entire area from my waist to just under my breasts. Between my diaphragm, intercostal muscle spasms and my guts just not shutting up for anything, I right now would just like someone to remove that entire slice out of my body. There doesn’t seem to be any comfort anywhere, even lying down brings no relief, in fact, it normally makes it worse. I don’t understand what happens when I shift from vertical to horizontal, but something major changes as the feeling of tightness and pressure just keeps rising and rising, until sleep takes over. I honestly don’t think that if it wasn’t for whatever damage has happened to my sleep centre, that I would ever sleep. No one can sleep through such sensations and pain, especially as the tighter it all gets, the louder and faster my heart seems to get also. I know this is going to sound odd, but it is a total fact. As I go to sleep, I always land up breathing through my mouth and as I relax further and further I start to be aware of hearing my breath, almost as though I am breathing heavily onto the duvet. I now know it’s not, I know because recently when I have had this intense tightness and pressure, I am actually hearing my pulse in my breath. Every breath out, has tiny breaks in sound that totally match my pulse, but nothing on the inwards breath other than silence. When I first heard it, it made sleep really difficult, as soon as it started I would rouse enough to stop it. Gradually, I have managed to firstly get used to it, but also to not blame on, as I did, my right lung, but the pulse in my neck, somehow it is changing the sound my throat is adds to my breath. It has only been like that for a couple of weeks, not the noisy sleep breathing, Adam has been telling me about that for years, just the new addition of the pulse, which only happens when my mid region is locked in these tight pressure cycles. Clearly I am relaxed enough in both body and mind to go to sleep, that is how used to the whole pain/pressure thing I am, yet I can’t relax my way out of either, there is nothing I can do about them, so I sleep and escape it all for a while.

It sounds so wrong to be able to sleep when I have my body screaming at me there is something wrong here, but if I didn’t, I would never sleep, there is always something it is complaining about. I am sure that years ago that it played its part in the fact I would only sleep between 4 and 6 hours, the longer you are ill and the longer you live with something, you slowly do relax about the whole thing. There is no point getting stressed about hearing you pulse or the pain in any part of your body, I have learned that I survive them all, well I am still here, so I must. I quite honestly don’t think I have been stressed about myself even slightly in the past 7 years. Of course, I was stressed when I was made redundant but that was stress about our future, not my health. I have been able to separate out my health from everything else that might be happening for a long time and it is actually quite an easy thing to do. I suspect it is because of the length of time it took for me to be diagnosed as I had actually begun to believe the doctors who kept brushing me off as it ” all being in my head”, I kind of started to treat it that way myself. It didn’t matter how physical the symptoms, I pocketed them in a space that meant I could carry on living, it wasn’t until I was diagnosed that I let them out, only to find that it really didn’t matter any longer. In a strange way I had learned by myself that whether others believed me or not, I could live with all of it and had to, as no one was going to pay me for staying at home ill all the time. I simply learned to get on with life regardless of how I felt. Even when it got so bad that I knew I had to try just one more time to get an answer, I didn’t let them win, nor did I let them win until I couldn’t manage any longer and I wasn’t fooling anyone, not even myself and home was the only place for me. What it taught me thought was how to deal with the worst things that always turn up when you least need them, like while you are trying to sleep, I can still pocket them, separate from the need to sleep and in a way that lets me sleep.

It is something that I wish I could teach to others, I can’t imagine trying to cope with all this without my escape of sleep. I may not like sleeping 12 to 13 hours a day, or the fact that I feel now as though that is no longer enough, but I can’t imagine what it would be like if all I was getting were those same 4 to 6 hours I used to, when my health wasn’t nearly so bad. In many ways, I think that those doctors who won’t prescribe strong pain control or sleeping tablets to those who are never going to be well again are practising cruelty, yes I still count my blessings.

Please read my blog from 2 years ago today – 25/01/13 – No pain can be worse than pain

I woke this morning with something missing, my left foot. It was totally dead to everything, which as you can imagine caused just a few problems with getting out of my bed, it hadn’t just ‘gone to sleep’ as in lacking circulation, it was totally missing as if someone had actually cut them off. This is far from the first time, but the scary thing always is will it return……