I had to go to my bed early last night, I just couldn’t stay awake any longer and I felt like I would die on the spot, well die might be an exaggeration, pass out would be much closer. Most of the day I had been struggling, it was difficult to feel anything about anything, but I guess it was to be expected following the morning I had. I was right, sitting writing did make it all worse as within an hour or so, I began to just feel like I have been all week, but the exhaustion was somehow deeper, as though it wasn’t just my body that had had enough, but my entire self was drained of everything of any importance. Truthfully I could have headed to bed at around 7pm, but I wanted to stay up, I wanted that time with Adam before I gave into it. When I did go, I found myself asking him if he would mind if I went to bed, I never ask, but it just felt right last night. 8:30 and my day was over and I was once again lying there in my bed, feeling everything my body has to offer in the way of pain and too tired to actually care about any of it. I don’t know what it was that made me wake up at 5am, but I was lying there awake needing to go to the loo and to have a cigarette, so that was what I did. I know I didn’t make any noise but by the time I was in the loo, I heard Adam in the kitchen, there we were both awake, him filling the washing machine and me sitting on my perching stool drinking a glass of coke and having a cigarette. The stupid thing was, it all felt so right, not odd in any way what so ever, I headed back to bed and he headed back to the settee in the living room, after a second “good night, I love you”, we both just went back to sleep.
I know that Adam always seems to me to be half asleep and half listening for my every move. When he falls asleep at the weekend during the day, which is often, he always snores, but the second I move, the snoring ends. He spends his days worrying about me always checking that I am OK, that I haven’t fallen or I don’t need something. I used to think that work was at least a distraction, a place he could go where what was happening to me would be put out of his mind and even though he says that he thinks of me, I know he also has to have long periods where work takes over. Yet he comes home every lunchtime, sometimes just for 10 minutes, but enough to put his mind to rest that nothing horrendous has happened to me. This isn’t the first time in the last few weeks that I have woken at night and he has appeared just there not speaking, but watching me. It doesn’t matter how many times I try to reassure him that I can manage without him and if I need his help I will ask him, there is nothing that I can say or do that seems to make the slightest difference, he worries. I have tried hard to put myself in his place, to work out what on earth I can do to put his mind at ease, but the closest I get is the way I was when my children were small, I too woke to every noise, appeared to watch when I was worried and slept with one ear and one eye open. It goes with loving someone I guess, but it feels so wrong that my health has put him in this position, that to me just isn’t fair, I choose to be a parent, he didn’t choose to be a carer.
There is one thing I have noticed and that is how much more he is also picking up on how I am, in fact to the point where I am still trying to work out how I feel in the morning and he is fussing around, not wanting to leave me as he can see what I only know later. He reads me in ways I can’t even read myself now, you would think that would be a comfort, but from a person who always thought they were good at hiding things, it is a great disappointment. I know I am incredibly lucky to have someone who loves me that much, but all I want to do is give him peace, peace from his never ending fear of what will happen next. If I could give him that peace it would give me peace from the guilt I feel for making him worry, even though neither of us have any control over what has happened.
Wow, I have never said that before, I know inside how I feel, but admitting it here is something I have never written about before, I have said that I want to give Adam peace from his worrying, but not about the guilt that it causes me. I don’t know, but I think guilt must affect everyone who is this ill, it is probably as hard for me to see what my MS has done to Adam, as it is for him to watch what is happening to me. Knowing that the pain I feel, is felt by him in a different way, just doesn’t feel fair, nothing about the whole horrible mess is fair, but when it was just me, when no one else lived it with me, I coped probably in some ways better than I do now, as it was silently there inside me, guilt free and destructive only to me. There were times when this all started that I thought the best thing I could do was to let Adam go, to divorce him and let him live a life without me as I didn’t want to feel the guilt I did, I wanted to stop feeling as though I had somehow trapped him in a life he never asked for. Part of it was simply because of the age difference, 17 years younger than me and with a whole life that I thought would be better for him without me. I even went as far as talking to him about it and being told in no uncertain terms that that was not going to happen. Illness slowly destroys, it eats away bit by bit, removing everything as it goes, that’s why I know I am lucky as it hasn’t managed to eat away at the love we have for each other.
I doubt I will ever not feel guilty about being ill, in fact I think the guilt will only get worse as my health does, it is something I have had to live with this far and I guess I will have to live with to the end as unless I suddenly find that miracle cure, well Adams role of my carer is only ever going to grow. We can’t control our emotions, I can make myself stop feeling guilt anymore than I can stop myself from loving Adam, life isn’t fair sometimes, in fact, I doubt it is ever truly fair for anyone, we all want the things we think we should have, but most of us rarely get any of them.
Please read my blog from 2 years ago today – 21/06/12 – My condition? Waiting AGAIN!
Two Rooms Plus Utilities 