The first day of June and I have just turned on the fire yet again. I honestly don’t know what is going on this year, it is as though everything stopped back in January and hasn’t improved since then and I’m not just talking about the weather. It’s just been one long odd year so far. I suppose when you are caught up in something that is happening to you and you can find no relief, well it distorts everything else. I have tried so hard not to let myself ever be isolated inside myself throughout my illness, but somehow I feel as though I am suddenly failing to do so effectively. I have realised that Adam is even noticing the change in me. I have lost count the number of times he has asked me recently “Are you alright?”. It’s not so much his words but the true look of concern and confusion as though he is trying straight away to see past whatever the words are that might come from my mouth.

When you live your life locked in pain it is easy to stay there and to not reach out and be part of the world around you. I have made a point of not letting our conversation be stifled by it, to keep in contact in the same way that as I always have, with a mix of small talk and deeper subjects when needed. Lately though I know that I am failing when it comes to small talk, replacing it with silence. As they say it not what is said but what that is held in the science that matters. In my case all too often it is nothing more than pain and the deadening effect it has had over my life. The rest is a side effect of the same, as when you are locked inside you stop paying attention to what might be said later in the day. The TV and internet that have managed to keep me so involved with the world aren’t managing to make their way into my brain as they usually do. We are both used to my having an array of things to talk about and being able to pick up in Adams words clues that pull our chatter in other directions constantly. Locked inside myself, I now all too often don’t hear the subject of his words, far less the opportunity to deviate on the subject.

I used to be so good at putting my health into a compartment where no, I couldn’t ignore it, but I could control its impact on everything else. Somewhere along the passing of this year, it has escaped and the pain and discomfort have taken control of everything else. It is as though I am in some parallel universe within our home, sat here but not here at all. I know I am often just sat staring into space, facing the TV or my computer screen, but totally unaware of their existence. “Are you alright?”, will suddenly cut through it and I am grabbed back into reality to find that once again I had vanished. I can see the concern in his eyes, as he already knows the answer to his question. He knows perfectly well that I am somewhere else, he also know from my body language that pain has hold of me, but he’s not used to seeing it. My skill of covering up the annoying and the draining is now quite extensive, with so many years of practise if I couldn’t cover it all, well I would consider myself as pathetic. You can’t live your life showing those around you just how things really are, not if you want any form of a life you might call normal. I thought that it was a skill I no longer had to even practise, it was polished and perfected. Yet here I am slowly failing again and again to cover anything over.

I know I don’t have to hide it, but I don’t want anyone constantly worrying about me more than they already do. Adam has to be able to leave the house not fearing every second that he can’t physically see me, is a second where he could somehow be helping me. Not that anyone can help when your body is destroying you, if anyone could, believe me, I would have taken it long ago. “Are you alright?”, each time I hear it I instantly know that once again I have failed, that once more he isn’t seeing me, he is seeing my pain. That’s what I didn’t want, that’s why I hide the truth as I am a person, not a person in pain. Just seeing his pain and concern over what is there in front of him, causes me more pain, because it’s my pain, not his and my role is to protect him from it and I’m failing.

This year things have changed so much and changed so rapidly that I haven’t been able to keep up with it. When I was writing yesterday about flares vs. progression, this was what I was really writing about. Flares are sudden, they cause trauma to all concerned but their quickly over and life is rebuilt and goes on. Progression is slow, insidious and uncontrollable, you can’t rebuild as it doesn’t give you those points where renewal can happen. As fast as you might find a chink where you can get a finger hold and start the process it has changed again and you are once more floundering, lost and hearing “Are you alright?”. No, I’m not but I don’t want it to be seen all the time. I want it back in that container just off to one side where life goes on and it quietly grew without daily or hourly impact. This year has found me living further and further under a millstone. One that once it has reduced me to powder doesn’t even allow rejuvenation, it just starts to grind again. There aren’t enough hours in a day to sleep or enough minutes in those hours to rest. Everything just keeps growing and as it does so, it is swallowing up the “me” that I was holding onto so tightly.

This is the start of month six, my sixth month without a single complete waking hour where I haven’t been in pain. I don’t suppose it is a surprise to anyone other than me that I can’t cover it up. That I can’t show a bright and breezy face to life and smile my way through every minute. I am so tired, so past the point of making light conversation and ignoring the truth. I just want a week off, a holiday where I can renew and refresh, time to recharge my smile and time to find those chinks that I can hold onto. You see, I know they are there, they have to be, life always has them. Unfortunately, you can’t take a holiday from your health. I know I am just feeling worn down, it happens to us all and I suspect that I did set myself up for this one as I believed so totally in what the consultant was saying, yet nothing has changed at all. I know I have to give it more time and I can hear all that goes with those words. I just don’t want to be sitting here at the start of July and having to say this is the start of my seventh month.

Read my blog from 2 years ago today – 1/06/13 – Just too much

I realised last night that my toenails were really needing cutting and I asked Adam if he could cut them for me at some point over the weekend, he offered to sort them right then. It was at that moment that I said something I know I say to him again and again, but it’s a statement that along with the reality of the process, conveys just how exhausting life with illness really is, all I said was “I’m too tired”. If you think about it…..