We had a bank holiday this week, which meant that Adam was at home, rather than working. It’s totally thrown me, I don’t know how many times I have checked what day it is today, but I’m still lost. Adam spent it cooking my psyllium pancakes and worrying about his mother as it’s today that she will be having her mastectomy. He said that he’s been having bad headaches over the last week, not surprising really. He is stressed, far more stressed than normal. I went into the kitchen while he was stood there at the cooker and all I wanted to do was stand up and give him a cuddle, but I couldn’t. It wasn’t because he was visibly upset, it was simply because a few years ago, it was the sort of thing I would have just done. I would have just stood behind him and wrapped my arms around him, and simply held on while he continued what he was doing, or he turned around to face me. All those simple, little, spontaneous acts are gone. It’s not quite the same wheeling up behind him, pinning him with my chair, and finding my arms in line with his hips. Somehow, it just doesn’t work any longer. I used to love spontaneity, but when you have to think through every tiny action, consider how your wheels are going to get in the way, how much energy you have, what pain it might all cause and if you have the physical strength left, destroyed that long ago.

It’s rare now that we have a true cuddle. Well if you think about it for a few minutes, you would see why. It’s nothing to do with not loving each other, and everything to do with this stupid body of mine. I have two positions, sat down, or laid flat on my back. If you’re stood up and faced with someone who is sitting, how do you cuddle them? Harder still, how do I cuddle him? Whatever you try, it will be brief and not really comfortable, nothing like a true cuddle. I am now after many years of being ill, well acquainted with his stomach, not exactly the part I would prefer to see during our daily cuddles. If he comes down to my level, as he does every night to say “good night”, it requires a lot of strength in his quads, something that’s not always there for long. Even when we sit together on the settee, cuddling is hard work. I can’t sit still for long, I am always having to change position, either to breathe better or to relieve the pain. I’m never still for more than a couple of minutes, so it just doesn’t work. Adam is as always, scared of causing me pain, and takes it personally when I suddenly pull away or move him due to the pain. It’s not him, just me my body screaming it can’t take any more. Lying down isn’t any better. I can’t roll over, not even onto my side. I am stuck there flat on my back, and yes, he can cuddle me, but I can’t really cuddle him in return. All I can do is lie there, feeling like a spare part in life. Even if he helped to bring me onto my side, I couldn’t stay there for more than a few seconds, as the pain just builds and builds, until I flop once more onto my back.

Every single element of our lives has changed. Even at times like now, when all I want to do is try to take some of his pain away, mine gets in the way. All I could do yesterday was to talk, to try and use words to reassure and to sooth. Yes, we share the odd touch, reach out to each other in passing, but none of it is even close to the way we once were. It is at times like this that I get angry with my health. I feel so useless, so unable to do anything. He has taken tomorrow off work so that he can spend the day at the hospital with her, I will be stuck here, feeling beyond useless. I should be there for him and for her, but once again, my health wins. When it comes down to it, I am a head on a body that doesn’t work in anyway that is of use to anyone, not even me a lot of the time. I get angry at what has been taken away, from not just me, but from everyone that I care for. Acceptance doesn’t help them, and I know because I am human, that the logic that says, “I can’t do anything else”, doesn’t fill that space I once occupied. Tomorrow, no matter what the operation found or didn’t, there will be times when Adam will have that need to have my arms around him, and I, of course, I won’t be there.

In many ways, I am the living dead. To the outside world, I am gone, it is only those who come to me, know that I am alive to at all. To most, I am gone, just as completely as if I were dead, to others, I am the ghost, that empty space, that no matter how much I want to be filling it, will always be empty. Even to the few who know I am still alive, I am the body that no one quite knows how to touch, how to be with and even how to show love to. Thier not alone, as my once spontaneous nature, who didn’t care what others thought, would hug, hold hands with and be affectionate to those that I loved, no longer even knows where to start.

Being the owner of a physical form like mine, is a trial for all those around me, and even for many who aren’t. It is a position in this world that is hard to come to terms with, but can still be far better than most imagine. Love is the most amazing creature, as believe me, as an invisible force in this world, I have learned to understand it, better than many. I might have been forced to not be like others, but I’ve found many ways of still showing my love, of still being part of and of feeling it in return. The physical aspects of love, those moments where we pass it from one to another, don’t have to be physical at all. I don’t feel any less loved by Adam than I did on the day we married, and by refusing to remain invisible, by building a network of friends here online, I’ve found more love than I ever expected. Not once will any of you ever see me, nor I see you, but that doesn’t change a second of what we share, by sharing right here, your time with me.

Please read my blog from 2 years ago today – 04/05/2014 – Lightening strike

Over the last couple of weeks, I have been having more and more spasms in me rib cage. There have been the total lock downs which I have become used to, they don’t phase me any more than a spam in my arms or legs would, but now I have a new pain and it catches me off every single time it happens. They are sudden, sharp and painful, like lightning strikes that circle my torso and cause me to stop dead whatever I am doing and then they are gone. I know well enough that the length of time that spasm lasts can be anything from a second to weeks, but these are so different and have now been around long enough for me to add them to the list of things that are happening. The very first was when I was in the kitchen sorting out my lunch, I thought that I had caused it by twisting or maybe nipping a nerve, but while I was there it happened three times, but still I dismissed it. It didn’t happen again until the next day just as I was getting up and dressed and bang, I was stopped and in pain, not in the same intercostal….