The first steps forwards

Well, I broke the ice yesterday so here we go. I doubt if it is just me, but I find looking backwards on life not always the easiest thing to do, not because of the pain that lies there, which undoubtedly there is, but because I can’t always remember the finer points just the overall general sensation of how my emotions were at the time. I also know that it isn’t just the looking back just now that is hard, it is the fact that Adam and I have gone over so many things that we didn’t deal with at the right time, that I am both raw and extremely tired, oddly for once though it feels like a good tired, one that I actually deserve to feel. The pair of us both thought that we had sorted everything out in our own minds and with each other just what the real impact of my illness meant. What I hadn’t taken into account was that he was just trying to be strong for me, so that I felt able to get on with what was happening to me, without worrying about him. I fear that right around the world there are couples doing exactly the same thing, but it leaves me feeling a bit guilty, not what he intended I know, but I can’t help it as I feel that I really should have put the pieces together and seen the truth much sooner.

As long as I thought that I he was fine, I was content to push on with the tests and treatment that had to be done. I couldn’t possibly count the number of times that he asked if I wanted him to come with me, I always said no, not realising that what he was really saying was he wanted to come with me. I just couldn’t see the point in both of us having our day disrupted by sitting in a hospital waiting for a doctor. Even when I was having chemo, I pushed him off to his work and wouldn’t let him fuss over me, I thought that as long as he could see that I was fine and I wasn’t falling to pieces, he would be fine, just as he appeared to be. Both of us were playing games, putting on a front of calm understanding and total ability to take whatever the world threw at us. I now know that the act was far bigger on his side than mine and has only appeared in his constant fussing about things, like the shopping arriving and him having to come home at lunchtime to put it away, just in case I tripped over one of the bags lying in the hall, or his almost daily request to let him help me. I doubt I need to explain to anyone who has read for a while, but I am a strongly independent person and he is a deeply caring and loving one, the circle that appeared was inevitable really, simply because we are two different people who fell into a rut and stayed there trying to be the other.

The really stupid thing is we have been here, well no not here, we have been no way even close to this point in the past, but we have had points where some of this came out and was buried all to soon after with just a sticking plaster in place to heal it. Times when a catalyst would appear, usually some stupid heated discussion that caused a comment that couldn’t be taken back and everything else just followed. In total honesty, we aren’t the type of couple who argue, maybe we should, as then we might not play these stupid games and stop moving through life believing the other is perfectly alright. Anyway, this time is going to be different because firstly I am writing about it as it is happening, that means I am not dismissing one single second of it. I no longer have the strength to keep on playing games, I also have hit a point where I have been forced to slowly admit more and more that I am no longer the person I once was. I don’t have the strength to hold myself together any longer and I clearly don’t have the strength to hold Adams world together as well.

Talking is only the first step, despite both of us going to a MS support group when I was first diagnosed that didn’t work for either of us, it was more a collection of people who were vying for the slot of worst off, both in health and situation, no support at all, but Adam is going to try again. We are going to see if we can find a support group for carers as honestly the medical condition really doesn’t matter, what matters is a group of people who understand just what it means to partner chronic illness as that is the support he really needs and look into what other help is out there. I am going to also be more honest with him as to what is exactly happening to me and the help that I do need when I need it, whilst accepting more of his when it is offered and he is not going to bottle things up because he feels I have enough to deal with.

Knowing the right thing to do for even your own partner can be hard, especially when you both act of our love for the other, without remembering they are not you and you honestly don’t know what their true reaction will be to anything, the best we can do is guess. It also doesn’t matter how many small things happen along the way, it can be put right if you are both honest with each other and you both are more than willing to accept where we each went wrong and work to make sure it doesn’t happen again. Any marriage requires daily effort on both sides, especially when there is a third party involved and that is exactly what living with chronic illness is like, it’s the third member of our marriage. One that neither of us can predict, control or even at times understand, all we do know is it is all too often in control of both of us.


Please read my blog from 2 years ago today – 22/01/13 – Spin-off 

Yesterday I had no choice in what I wanted to write about, when pain engulfs you like that there is no way to make you brain think of anything else. It is like you have moved into a bubble that excludes you from the rest of the world, even from the room you are sat in and…….

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