15 years ago today, Adam and I got married. I have to say that it doesn’t feel anything like that amount of time has passed, my first marriage only lasted 10 years, but it feels as thought it went on for what felt like ever. They say that when you are happy time fly’s, well I guess I have the proof of that saying, as despite all the things that have gone wrong for us, I still honestly don’t know where these last 15 years has gone. If you have read any of the posts I set links to at the bottom of each post which takes you to the same day two years ago, well you will have read a about how we came to be together and the problems that we faced with adapting to my illness only diagnosed a couple of years after we married, so I am not going to go over all of that again. What I will say though is that I honestly actually love him more today, than I did 15 years ago, something at the time I didn’t think possible, but life is full of surprises. Due to finances, there are no gifts to exchange or large celebrations but we are treating ourselves to a carry out meal tonight, a treat we haven’t last had since Teressa and John were here at Christmas.
It is easy for every day to become just another one, days do seem to become just a continuation of the one before once you don’t have work or the outside world to keep right as to what is happening. Even this morning I had to double check and still forgot until I had had my shower to say happy birthday or happy anniversary to him. Part of that I know is down to my stupid brain just not holding onto things, but there is also a huge dollop of knowing the hour, but not knowing the day. Three things govern my life, when I need to sleep, eat and take my medication, the day of the week makes not the slightest difference to me, the days of the year, well even less, in some ways it is a bit like stepping back into early childhood, entertainment, food, sleep and comfort rules everything, the rest of the world just doesn’t exist. It isn’t being selfish, although I can fully understand that it might sound that way, but it is much deeper and much more primeval if you like. We all know what it is like to see a small child when they are ill, they don’t want to do anything, go anywhere or even have anything to do with anyone, but you know instantly when they are feeling better, as they are suddenly no longer lying in bed but driving you mad. Chronic illness is on the same level, you pull your world inside yourself and without knowing or meaning to, you’re become self-centred because you don’t actually have any other option. Self-preservation, the limiting of pain, the control over fatigue and desire to just exist takes over whether you let it or not.
I know that I fight constantly with just keeping myself going and still showing Adam that I love him and need him, not just for cleaning the house and fetching my meds from the chemist, I need him as a person, as my husband as well. What I give him though is limited and I feel guilty for all the times that I have lost my temper with him or scolded him because he does something differently from the way I would have when I was fit and healthy. It is hard when your entire self is screaming “I am in pain” or you just want to go to bed despite the fact he has come home early to spend time with you. I can’t control in any way, any of those things, I am locked inside with this child who is ill telling me what to do, the adult side is as always somewhat lost as how to deal with a child who is being anything but co-operative and all too often as adults do, just gives in.
I haven’t the slightest doubt that if my younger self had met me as I am now, that I would have had not the slightest understanding or even tolerance for me as I am now, I have no doubt that I would have scolded me and told me to pull myself together, grow up, get up and get on with it. I wouldn’t have had the slightest sympathy or empathy, as I believed myself then to be stronger, more capable than this, that I could and always would be able to do everything and more not just for myself, but for those around me. I was the person who needed just 4 or 5 hours sleep and every minute of being awake was used not wasted, my home was perfect, our meals fantastic and our lives organised to the finest point. Yet here I am unable to do almost anything and it took just 8 years, step by step I have become incapable of even being sure what day it is, or even really caring greatly on a normal day when I do. Strangely I didn’t notice it happening, I can’t tell you the day that I finally shifted from independent to incapable, but I do know that somewhere along the line it happened. I never chose to be useless, I never made a decision to take on a child-like state of existence based demands, but that is what chronic illness has done to me. I can only assume that it is also what happens to others too, what I do know is, unfortunately, I am still in many ways at the start of that process. For now, I can still get my own food and meds, I can make the decision to give in and go to bed, I can still manage to take those steps by myself, slower than I used to, but I still can do it, but for how long.
Adam and I have talked about it many times and both of us know that the day will come when he will have to take on more and more of organising and initiating my life for me. The day will come when Adam has to take on totally the role of carer and I will have stepped even further back on the scale of childhood, being fed, cleaned and put to and taken out of bed. All of us start and end our lives in those same states, but none of us expect to be there when we still thought we would be living a full life. Adam has said that he hasn’t the slightest problem in being my carer, he sees it as a given, something that the day he fell in love with me and married me simply became his role when it would be needed. I though as a pig-headed, independent, pain in the neck feel worse and worse about the day that it will arrive, my body may well be behaving like a child, my mind may even be in line with it but that doesn’t mean my soul has to be as well. To this point everything has just happened, I haven’t been aware of the changes, they are just there, I can only hope that those last changes will also happen as smoothly.
Please read my blog from 2 years ago today – 24/04/12 – The man I love
Two Rooms Plus Utilities 