The hardest button to button

Every night I think of Joseph Merrick before I go to sleep. The man, less than affectionately, given the title the Elephant Man comes to mind because of one peculiarity of his life.

Because of the nature of his deformities, namely that the size, shape and weight of his head were so that he couldn't sleep lying down like most normal people do. If we are to believe the play and movie of his life he decided to lie down to sleep one night just to be like normal people. It was his last decision as his windpipe was crushed and he suffocated in his sleep.

My situation is less severe but similar and it's that way for two reasons. As we all know by now my lungs are in a horrible state of disrepair so if I lie down flat while I sleep my lungs compress, just like everyone else's do, but because mine are so scarred they can stick together and that makes them hard to re-inflate of a morning. I also have the PEG tube in my stomach to pump feed in through the night and you need to sit upright (or at least at an arse to back angle of greater than 45 degrees) so that the food can be digested like it normally would. I suppose it makes sense - we're not designed to eat lying down.

So I have an impressive amount of pillows all carefully placed to try and ensure I stay more or less upright through the night. I had a metal frame that's designed for this sort of thing but I just couldn't get comfortable with it so now I make do with my elaborate pillow formation.

It isn't the first time I've had to do this either. Immediately after my Bone Marrow Transplant I had to sleep completely upright for about a month because the radiotherapy had killed the mucous membranes that coat the oesophagus and prevent the acid from your stomach refluxing up into your throat and mouth. If you think that sounds sore it was the most painful thing I've ever endured. Considering I've nailed two of my fingers together with a nail gun, chopped the top off my thumb with a circular saw, and been run over by a forklift truck that's saying something. The pain was kept at bay with morphine, which was not very nice at all. Anyway I've talked about all that before.

So the sleeping upright thing is going ok but it's actually not the easiest thing to manage. Sure you can do it on a bus or a train for a wee while but to get a whole night through without somehow slipping down is surprisingly difficult. When I do wake up lying down all it means to me is that it takes a lot longer for me to get a breath in the morning and I can have a slightly upset and cramped stomach; nothing compared to what poor Mr Merrick went through.