Two hours

Having just published this post I must apologise now for the formatting - I have fiddled and it is better than it was. Lara or anyone else that can log in and knows enough html to tidy it up please feel free to do so :-)

I'm not sure if two hours constitutes a good nights sleep? I suspect not personally and feel rather disappointed it is just 1.30am or thereabouts. I've made good use of the flask and drug supply by the bed so I'm sipping a cup of tea whilst waiting for the oromorph to kick in. I thought I would try and write a bit more about why the past couple of days - and yesterday in particular have been so tough.

I feel before saying anything else I should preview this post with a disclaimer in very large capital letters, highlighted in bold black ink over a fluorescent pink background. Like THIS (only with the pink background which I cannot find ).

This disclaimer needs to read something along the lines of "Linda is incredibly grateful to everyone for all the care and attention she has received. She completely, utterly, and absolutely recognises all the hard work that has gone and continues to go into her care. Everything that is said here is intended simply to communicate how she is feeling and is not intended in any way as criticism. Linda is taking in excess of 200 tablets a week - much of which is Class A or otherwise very strong medication, and has not slept properly for two and a half weeks. It is therefore possible that she may say things which appear to be out of character (though I do hope not) and also that you may feel she is over reacting to the slightest thing. For this she can only apologise. Etc...."

That last bit is perhaps most significant - over reacting to the slightest thing. Can you remember a situation when your world has "shrunk"? Perhaps you have been in hospital, or just at home for a week with the 'flu. Your interaction with the outside world is reduced and unless you are in a situation where you have access to and can make a real effort to engage with the media it is oh so easy to disengage with what is happening outside of your daily round of activity. It can even happen on holiday but in those circumstances you are hopefully much happier and less inclined to find yourself in the situation I am trying to describe.

This situation is exacerbated by the institutionalisation that can occur in hospitals (similar to in prisons!) where everything begins to centre on the next meal, visiting hours etc.

In these circumstances it is way too easy to lose our sense of perspective and our sight of the Big Picture. So very small things take on way too much importance, things are taken out of context and misunderstood, people are unnecessarily upset and anyone or indeed everyone can quickly become defensive when no criticism or malice is intended.

We're going to have to get our heads better round all of this here at no 40 if we are to avoid unnecessary tears. My personal upsets over the past couple of days may well have been caused by the pain, and the meds, but have perhaps been made worse by my not managing to stress that I am simply communicating how I feel and not criticising anyone.

The fact of the matter when it comes to feelings is I feel pretty rubbish. The pain is very difficult to manage and no matter how much I think positively it does not go away (though it may be a lot less than I would otherwise be experiencing I do agree and accept...)

I also feel pretty scared - I can see I am making good progress - objectively and on one level. But at times it is impossible not to stop, think and wonder how life would be if this were to be it with no further improvement.

I hate with a vengeance the loss of control. No matter how much anyone says to me "enjoy being waited on" I simply cannot. I'm not a huge fan of being served in a restaurant, it took a very long time before I could accept that having my hair washed is part of the salon experience, heck I even strip my bed when checking out of a hotel! This accounts in part for my urgent desire to employ a cleaner - in that way we would at least be offering someone paid employment and I would not feel so uncomfortable with people doing things that I am used to doing myself.

Perhaps this all goes back to something trapped deep in a layer of my psyche - I am not sure it matters but I am sure now is not the time to unpack that. What matters for now is that the pain, the fear, the drugs and the loss of control are combining to create a situation which I am finding very difficult to handle.

I don't want anyone to try and fix me. Honestly. And there's the rub. So many people when I express any of the above want to put things right - but there is only so much that can be done. When they make suggestions which I seem to knock back they are hurt. As I said right at the beginning I am exceptionally grateful to everyone for all that you are doing. I could not be being offered nicer meals, more cups of tea, fresher fruit, cleaner sheets and nighties, smellier candles or moister cakes. I have dozens - no hundreds - of cards, messages, texts etc etc etc.

But the simple fact is that at the moment I feel rubbish and maybe all I need is for that to be acknowledged. I know it is tough for all the problem solvers who want to put things right but perhaps for now the only thing to do is to dig deep and find a hug or a touch somewhere that you can share with me which will assure me I am not alone.

Feels like a bit of a self indulgent post but hopefully in the wee small hours fuelled by pain and morphine it's allowed. Tomorrow I will post something more cheerful (Dave promises photos!) and let you know what the Teddies have been up to ;-

xxx