Passing on the full story

There are always those times when without reason or clear trigger that your mind rushes off, looking at something from the past or the possible future, and it all happens without your permission. In some ways looking to the future was a refreshing process after spending so much of my days putting right and bedding the past down for what I hope is a final time. No one can tell any of us what tomorrow holds, far less what next year or the one after, but we all try to work out how the world will be and what our part will be in it. I wasn’t looking for answers to anything really, more just wanting to have a better idea or what will happen next. This COPD has thrown a spanner into my future and with knowing so little about it, well I really don’t know how it plays out for an individual rather than a study group of one doctor. Being a stats addict I am always more inclined to dive into the published papers of a doctor rather than the web sites set up by charities and sufferers, I do of course go there eventually but it normally takes some time.

I went off on a search just to see if I could find not the main symptoms which the medical sites cover very well, but what I wanted to find out about were those pains that don’t seem to belong, the one that you just don’t know if they are your known condition or if they are yet something else. It seems to me that the more illnesses you have, the more that come along to play, close enough in location that they can hide or mimic the rest. I had for months been putting the COPD down to my MS, but then it eventually started to do things that MS doesn’t and knew something else was there. My search yesterday brought up very little, once again as I did when I first had MS, I could find almost nothing that matched how I feel and the descriptions where fuzzy and worded such that I couldn’t make out what they really where saying. How hard is it to say that there is a pain just below your armpit, centered clearly in between the ribs, but with edges that extend both outwards and inwards for about 5 or 6 inches. Both movement of my arm and breathing aggravate it but it is not debilitating at the moment. The closest I found was no more than an ache just below the armpit, well I am sorry that tells me nothing. I wanted once again to come across wordings that painted the picture not just stated a fact. I am guessing that it is once again up to me to include as much as I can about both illnesses.

I wanted more than anything to be able to separate out in a better fashion what belongs in the hands of which specialist, intercostal pain belongs with both, but does that small difference of the pain going deeper inside make it a COPD problem? I started to look through this on line data not so much for me but for Adam, the time will come when he will be making those decisions and talking to doctors about what is wrong, but if I can’t find of give him a good guide what chance will he have of talk clearly with knowledge to the right person. It has only been in recent years that Adam has come to the hospital with me, I had held tightly to my independence, it was my health and therefore my problem, I had forgotten the future at that time. I know that Adam has read too much about all of it on line, but his real understanding of how it is effecting me, come yes from here but also from our growing number of conversations about it all. For years I thought I was protecting him from it all, as why did he need to know, now I see that I actually should have had him there, all the way through. For me it is going to be hard but I am going to have to start talking more and more about how I feel and what is happening, not just when things are really bad, but all the time. The future that both my MS and my COPD have lined out in front of me match totally in the fact that I will be able to do less and less for myself, including talking. For Adam to be able to take on the task of being my voice, well he has to learn what he is talking about.

The greatest fear I think that all of us with conditions like mine, is the fact that the day will come when we can’t make ourselves understood, it is a point in time that will put an amazingly huge responsibility on our partners, as if they can’t talk for us, who can? I suppose that I have put very little thought in to that point in the future, it is one of those places I expect few of us want to go to, but if we don’t plan it that future is going to be really difficult for everyone. Every stage in illness has it’s problems, with my health still being at a point where I am still in control of almost everything, the problems of now are mainly physical, physical problems are easy to solve and mainly I solve them myself, but what happens when I can’t? Unless I start now talking to and educating Adam about all my health problems, even the embarrassing ones, well he won’t be able to pass on the details to anyone. I guess like so many things in life this is a point that I need to work on, to think about and put together a way of making it all work for both of us.

None of us want to have to hand our lives over into someone elses hands, no matter how much you love each other, it’s not just embarrass but it’s also not the reason that you married them. If I had wanted a carer in the future well I could have worked more and for better firms, then I could have paid for one, I wanted a companion in life, not a caring hand into death. There is this transition point that will face all of us with chronic illness and it is the point we pass on the daily running of our lives to another, when that another, is your partner, it is somewhat more difficult. I have also accepted that it is also a point in life that takes planning and understanding, all organized long before it is needed. It’s time to start thinking what tomorrow really holds.

3 thoughts on “Passing on the full story

  1. What a beautiful post wonderfully expressed and written. You have such high emotional intelligence and an ability to put even the most difficult of topics and thoughts into words we can all relate to. Thank you. Siobhán

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  2. ever since my first diagnosis that image first shot into my mind and has haunted me on and off ever since that moment when I have to surrender myself, my freedom and my future self or what there would be of me to someone elses control at the time of my diagnosis I hadnt met Jen and we werent together in any way But now that we are married I often think this isnt why I married Jen this isnt what I wanted to have to force my choices upon her etc but I have also thought the other way around what if it was Jen that couldnt choose or communicate what would I do and I know that I would be there and will always be there for her doing what I hope she would want me to do HUGS.

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