Adjusting but for what result

I’m finding it hard to get my brain to accept that this is August, I know I have said it before but time is streaming past me, faster than I ever remember. Age on it’s own seems to speed thing up, but mind you my days are so short that that isn’t so surprising I guess. I hadn’t really put any thought into that before but when your day is reduced to half, it only makes sense that half the month will be missing as well. My need to sleep has clipped yet another half hour off the day, I seem to be only making it to 8:30 on my best days, it isn’t just the need to sleep that is shortening my days, but I am finding sitting on the settee more and more uncomfortable. Last night like many others found me propped by cushions and unable to really breath, my breaths have become shallow and concentrated in the upper section of my lungs, that way allowing my diaphragm to not move in the process. It is a growing pain these days and sitting there the lower section of my lungs feel like they are made of stone, but painful stone. If I sit back I breath in difficulty but relieve the lower pain somewhat, I have to then lean forward again as I can breath with far more ease, then the pain increases as I am crunching my ribs into my diaphragm. I eventually get to the point where I have had enough and I head to bed where I can lie down with a bit more comfort, but more than that I go to sleep and I am free of it all.

To have gone from someone who slept around 5 to 6 hrs a night to actually only really actually being able to stay awake that length of time, is a really odd and difficult thing to get my head around. The path of my illness has totally turned my life upside down, I lost so much so quickly from the things I loved to do the most. When you are an active person, the adjustment into a life of doing almost nothing may sound impossible to many. I myself would never have believed that I could be happy living with in my home unable to do anything physically productive. I know that this is a form of being productive and I still recommend writing to everyone, but I was never one to sit doing nothing, I couldn’t even sit and watch TV, I had to be doing something physical as well. One of the biggest things I have learned over the years is just how adaptive we humans are, I guarantee that anyone reading this who has full health right now, would if the need occurred be able to adapt. It is almost as thought we can reprogram ourselves to where we are and the life we need to deal with, if we couldn’t none of us would survive having children, bringing them up and then them leaving. Adam frequently says to me that he just doesn’t understand how I live with the just the pain far less everything else. I can’t answer that for him anymore than I can for anyone else, but it isn’t something you do consciously, I never drew up a huge plan or made decisions about how my life would be, it just happens and you just do it. It isn’t positivity or strength, or any of the other things people anoint me with, it is simply just going on from one minute to the next and from there on to the next day, the next month and the next year.

Then suddenly it changes, suddenly there is a point reached in your illness when you do have to start planning and strangely it isn’t for life it is for death. I haven’t spent so much time ever working out how to live as I had recently spent on how to die. Suddenly the illness I knew I had, that causes me pain, makes me sleep and that I had adapted to, has changed and it is ruling and controlling more and more of my life. It is no longer just there, it is here all the time, with no rest times and no space. I have entered the point where I don’t have to read my diagnosis and double check it any longer, my collection of chronic conditions are no longer just there, they are here, very alive and active in there own rights. Up to this point I often found myself feeling as though I was a fraud, as I still had times when I didn’t feel or wasn’t aware of being ill. I was so used to the constant level of all my symptoms that they had become normal, just the way life was, with good days and bad days, but still I felt stable and in control, all that has suddenly gone. There is no longer any rest and my life is changing at a speed that leaves me with no doubt about validating my conditions, they exist on a daily bases.

I don’t know how well I am explaining this as all I know is that in the last few months everything seems to be different. I am still happy and I still able to cope, but I feel that my control and my own understanding of what is happening to me has clearly changed. I know it started around 6 months ago and from then onward everything is racing around me, there is never enough time, for me to even catchup with my own thoughts and feelings. The only two constants have been my contentment within the muddle I call life and the fact that Adam is always there, regardless what is happening to me. I suppose this is more how I thought things would be when I was diagnosed with a progressive condition, that my health would be out of control not a steady downward slope but there would be steep sections to deal with, just like I am now.

2 thoughts on “Adjusting but for what result

  1. Hello! I hope the pain you describe in the other post did not turn out to be a cracked rib. Regardless, it will heal. I trust it is already somewhat better!

    I very much like your idea about moving from one minute to the next, which is so simple and contains so much truth. You have a great deal of insight. Thank you for writing these! – Amy at Sunrise

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  2. until I was diagnosed I never knew just how adaptable we are. I have found so many adaptions or work arounds since my illness has progressed. I know it will get worse but as you said as long as I can cope with the steps being them big or small then I am happy to still be here .

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