I went to my bed last night at 7:30, exhaustion had made the whole day difficult to get through and when Adam came home I told him then that I really needed to sleep. I sat up for another hour as I wanted to spend some time, no matter how little with him before letting sleep take over. I still wasn’t ready to join the world thought when the alarm brought me out of my 12 hours sleep and in all honestly I am already struggling to just keep working through my morning routine. Once again I have clearly entered one of my sleepy spells and I know from experience there is little to do, other than give in. The hardest thing about wanting to sleep this much is always the lack of time I have to fit into the normal worlds hours, exhaustion doesn’t respect working hours. Not having the time I want to spend with Adam, even if it is just sitting together watching TV with passing comments, the simple normality of married life goes out the window. I know without a doubt that last night I could have easily been in bed before he came home from work, still sleeping to the morning without seeing him at all, but it’s not what I want. It’s not something I ever want to happen, but I guess the point will come when I will not have the slightest choice in my bodies decisions. In just the past year my sleep hours have increased dramatically and are still increasing when ever I let them, it makes a normal life impossible and puts more and more pressure on all relationships.
Adams family were given time slots quite a while ago now in which it is safe to call without waking me up. During the day they know that if they phone in the afternoon between 1 and 5 pm they will more than likely wake me up, I don’t always seem to go into such a deep sleep during the day and waking me means I will sleep earlier that night. At night it is the same, but once I am deeply asleep they are unlikely to wake me, I don’t know why but it has always been the same, that if I am woken at night I can’t get back to sleep straight away, I always have to get up and often will stay up for a couple of hours, clearly that throws everything out of line for me. Sleep dominates both of our lives, lack of sleep always makes every pain worse and destroys my ability to talk, think or do anything else. Just that one interruption to my sleep actually will upset everything for several days to come, it becomes a vicious circle as the increased pain stops me from sleeping and the lack or sleep increases the pain. There are no simple answers and all of it circles around one thing, just wanting to have time spent with my husband.
Illness can stop life working normally for so many reasons, but the biggest impact is always going to be on those relationships that mean the most, our partners. Adam cares for me deeply and I have no doubt about that but he also is the person who alone has seen me change from the energetic wife who never stopped for a minute, into someone who is finding life harder and harder. I know only from what he has told me, although he doesn’t really like talking about it at all, but he has at times opened up and told me just how hard it really has been for him to live with, the greatest thing I have picked up on is the fact he feels useless as he just doesn’t know what to do to help. That is something I can totally relate to, but I can’t make it easier for him as I don’t know what to do myself. The cold truth of chronic illness, none of us, doctor, patient or partner know what to do to make life normal. I don’t want to be the person who can do nothing other than dominate everything that happens within our home, I want to go back to being his wife. I know I will never be well again, but I would be happy just to be able to live a life that rotates around the rest of the world, rather than living in a constant zombie state, sleeping and living a life that no one else can help me get out of. I just want to be able to spend time with the person I love, but all I can do is disappear into sleep and leave him alone while I am once again in bed. It’s hard to maintain a relationship when you only see that person for at most just 2 – 3 hours a day. We wouldn’t even manage that if Adam didn’t come home at lunchtime, as that makes up half an hour of that.
Loving each other is a huge boost as when you are as useless as I am, just knowing there is someone who care, someone who will tuck you into bed when ever you can’t stay in the real world any longer, means far more than I can put into words. But I still wonder how you have a relationship with someone who is asleep all the time, what happens when I can’t even manage to be awake in the evening at all? I never saw this coming and no one ever gave me the slightest hint that sleep would be such a huge part of my life. Adam has to work, I have to be ill, that is the way it is and I expect like everything else we have already handled we will find a way of making it all work. So far it has been a slow step by step process and we have worked our way through each and every change, I just don’t want to face a future of seeing even less of him than I do right now.