There was a comment on yesterday’s post that highlighted something I don’t think I have really spoken about in any great depth, I did touch on it a few days ago, but I didn’t really go into it in depth. This morning when I read the comment from Cyndie it made me think a little more about it and I felt that I really did need to take it just that step further, I called it guilt, but Cyndie sees it as selfish, but I believe the two are really the same thing. I don’t think the name matters as it is two sides of the same coin, we feel selfish because things have to change just for us and guilty about it afterwards. I know that I have often expressed how it felt when I had to hand over bit by bit all the jobs that required to be done in the house to Adam as I simply couldn’t manage them any longer. To be honest, I don’t understand how men have managed for centuries to just sit and watch their wives doing all the cooking and cleaning, as I find it tearing me apart every time that he pushes the vacuum cleaner around or is stood in the kitchen washing all the glasses and other things that can’t go into the dishwasher. It’s hard, so hard to see someone doing the things that in your heart you feel are the things that you should be doing or at the very least helping with, when all you can do is sit there feeling bad and useless.

I know that Adams life is a million miles from where it was 10 years ago, I was and always have been at heart a 1950’s housewife, even though I had a full-time job that was more like a job and a half in the hours that it took to just do all the basics. My home had to be pin perfect and meals on time and freshly prepared and cooked, that’s why I call it guilt, but it is equally a feeling of being selfish as how else would anyone feel when change is forced on others, just because of you. It doesn’t matter how ill we are, no one wants to be the cause of someone entire life being turned upside down and it is one of the things that no one prepares us for when we are diagnosed with a chronic progressive condition. It doesn’t seem to matter either how long I am ill, it doesn’t get any easier, I still watching him and inside sit there saying to myself over and over “that is my job, this is all wrong”. I am also very aware that it is going to be a growing feeling as well, last weeks pampering session on my feet was another little proof of how wrong it all feels. I really did appreciate what he did for me, but throughout it, well I felt guilty, I shouldn’t have been sitting there with him dealing with the overgrowth of skin on my feet, I am in my 50’s not my 90’s and it is something I had never imagined that anyone would need to do for me until I was ancient. I wasn’t prepared in any way from my upbringing or from my life experiences to be in this position and there is nothing in my personality either that allows me to feel at ease with any of it. You can be as rational as you like about life, but logic and illness do not go together in any way what so ever, but there is nothing logical about being useless and in pain all the time.

I would say that in some ways it is the hardest adjustment that we have to make, adjusting to not working, being limited in mobility or ability are all things that mainly affect us. It is easy for me and I suppose all the rest of us who are ill, to see those adjustments that mainly affect us and in some warped way, we tell ourselves that that is OK, despite the fact that clearly they affect those around us as well. My being housebound has a million knock on effects on Adam, but I still kid myself that it is just me that has the real problem and it works, that is until something that should for most couples be a joint outing comes along and then I am once again left feeling guilty when he won’t go, because I would be left behind. To date, I have always done whatever I could to keep the impact on Adam down to just what I can’t change, I struggled for as long as I could with everything and only gave in when I didn’t have any options left. As I have admitted before, I even try to cover my pain as much as I can when he is around because I don’t want him to worry about me, as yes I even feel guilty about that. There isn’t a day that goes by without those feelings of being selfish or guilty don’t appear, the worst thing is, I don’t think they will ever go away, at best they are can be moved down the scale, at worst they move up. I honestly don’t think they are something that will ever change other than to get worse just as my health will do nothing other than get worse.

As I said logic plays no part in any of this, just as it doesn’t play any part in any human emotion, we can’t control it anymore than we can control who we fall in love with, emotion is never logical in any respect what so ever. I didn’t choose to be ill and I don’t choose feel guilty or appear to be selfish, they are all out of my control and if I am honest, I feel guilty that I can’t even control that. Accepting isn’t something that comes easily to many, I know for some it comes all too easily, I can think of many people I have known in my life who would love being the center of attention and having nothing to do but just sit there, but I think even they wouldn’t be untouched eventually if they found themselves in my position. I also know without asking him that if there was something that would improve my health, that Adam wouldn’t hesitate regardless of the impact on his life to make it happen. If someone loves you that is what they do, just as if there was something within my power to do for him, I wouldn’t hesitate. When you are as ill as I am now, the hardest thing to do is to remember and accept that we matter and what our health demands is what we have to do, regardless of anything or anyone else, it isn’t being selfish, it is self-preservation and we don’t really have a choice. Asking for help is hard, asking for someone to change everything is even harder but we aren’t the ones asking, it is something far bigger than us, it is the monster that lives inside us, our illness.

It is really easy for someone who isn’t ill to say “stop being silly”, or “I don’t mind”, but they are words, words that even though they are said with love and truth can’t undo the feelings inside us. I don’t think there is a way of stopping it, any more than I can stop having spasm, but what I do know is that on my worst days, the guilt somehow seems less, almost as though my brain then feels justified in my body being useless and accepting the help is permitted. On my good days, well I may know that I still need to do as little as possible as if I don’t all I am doing is inviting those bad days to return, but they are the worst days for guilt and there never seems to be days when the balance is just right. The truth of the whole thing is a truth that covers almost everything, being a caring human is a tough life for us all.

Read my blog from 2 years ago today – 26/03/13 – I have a Son to be proud of! > http://bit.ly/ZTsGtU

Well, I have met my future son in law and I have to say they really do make a great couple and I have no doubts about how well they are suited and how in love they are. They were a little later than I at first expected but once we had spoken through their time together since Johns plane arrived at Heathrow, I am surprised that….