Judgement day 1

…….but how many do I allow for. This is it, I am free of all extra drugs and it is now up to my body to do the work that they have been helping with. I have always hated this point in any illness, it feels as though someone has come along and whipped everything away just for a laugh. Having spent unknowingly the majority of my life with an autoimmune system that is playing by its own rules, all bugs have been hit or miss. I have lost count how many second rounds of antibiotics I have landed up having to take and the colour of what I am coughing up doesn’t fill me with inspiration. On the good side, I managed to go from around 10 pm last night right through until 6:30 this morning without coughing. Even Adam said that I was amazingly silent, no wheezing nothing. Since I woke unable to take a silent breath, I haven’t stopped coughing and the flow is impressive, plus odd, to say the least. All I can do is wait and see and if things show the slightest sign of closing in again, acting straight away.

Everything about today is about getting myself and my life back to a more normal pace and something closer to my routine. I say closer, as I am still in two minds about whether or not it needs changing. I know that my struggling with it could be nothing more than the exacerbation just slowly taking hold, but I can’t be sure. The one thing that I don’t want to find is myself wallowing under a pile of things that feel like they are about to bury me. This last week I stripped everything down to a minimum, enough to let people out there know that I was still alive, but little enough not to tax myself too much. My intention is to step things back up slowly and to allow within it how I feel each day, rather than the rigid this is what I have to do everyday. I know that it is the only way I have worked throughout my life, a constant rolling “To Do” list, but maybe it’s time to make it more a maybe list. It is one of the hardest things to get used to once your health is breaking down. None of us ever want to believe that we are doing too much, we are always capable of more. Having to let go of things, is hard. It doesn’t even change with the size of the task. I doesn’t matter whether it is stopping working or doing the housework or doing twenty minutes more on twitter, they all hurt. Every tiny step downwards is just that, a step that says, you are closer to death than you want to think about.

I realised a while ago that I had to change more than just what I was doing, there was a much bigger task, how I thought about things. How can anyone take two days to file their fingernails? Both hands on one day had somehow become too much and a task that if I look at it that way, just didn’t get done. Slowly those nails grew and grew until they were in danger of breaking, it was only when they did, that I did something about them. So incredibly silly as odd broken nails don’t make you feel good. I had to change how I saw that one task, I had to break it into pieces that let me cope with it and feel good about it, which isn’t that easy. I had to somehow accept that one hand on one day, the other the next, means I can achieve without feeling totally useless. Five nails filed over several hours, repeated for the second hand the next day. If I let myself think of it as pathetic, well that was just how I felt. By switching it around, achieving all the way, one nail at a time, I now have a task that doesn’t daunt me, scare me or even put me off doing it. I am not going to say that it is suddenly a total joy and I am proud of myself for getting it done, but “I” do it and that is the important bit. Even in the last week when Adam has never truly been far from me at any waking minute when my independence was possible, it was important.

Every time that I have gone through the process or reassessing and readjusting to my abilities, it is tough. The biggest thing I have learned from all of them is that feeling of independence and achievement have to be met, without them, it doesn’t work. I know without any doubt that these changes in my life are a long way from over. This first true exacerbation has shown me what my body has lain out for me in the future, it’s one of those hard things to get your head around that that wasn’t it, it’s going to happen and happen again. Life has taught me that when things happen again, they are inclined to also get worse, which in itself is scary. To survive them, I will need an even more flexible routine but still one that I can recognise as one. I never realised when I was diagnosed with any of my conditions, just how much of my future was going to be spent playing psychological games with myself. I am discovering more and more that those games are essential, how I see and feel about things is far more important than the pain or even the lack of oxygen. Anyone can take a tablet or hitch themselves up to an oxygen cylinder. Feeling bad about it, won’t have anything like the benefits that can be found when you can convince yourself it’s where you want not just need to be. I spend every day throwing tablets down my throat, I used to hate every single one of them. It isn’t just a case of getting used to taking them or the relief that they bring, there is now a positive feeling within me rather than the reluctance and even hatred that I felt for them at first. That one I take no credit for, it was something my brain did for me, but it is the same feeling that I can now reproduce for myself, in time, for all the hurdles jumped over or waiting to trip me up.

The most stupid thing I have ever had said to me by the majority of people is “You have to stay positive”. You can not make yourself be positive, if you don’t feel it, you can’t create it. Positive is a collection of things that come together, but we have to create all the elements ourselves. Control, achievement, independence and ability, are the major ones, with loads of tiny specks of others around them. Work on each element as its importance appears and that positive feeling about where you are in life does follow, it’s just a lot of work, but what else do I actually have left to do these days, other than make myself feel better.

Read my blog from 2 years ago today – 24/06/13 – Settled and happy again

I have to say that it has been an unexpected weekend, somehow all of this is bringing us closer, the opposite that I thought might happen as I know Adam and I are at other ends of the spectrum. Yet there is a feeling in each kiss and each word that says ‘I love you’ without the words being said, and when spoken the is a new depth that hasn’t been……