It started with, “I’m worried about tomorrow”, not a great opener, but it led to my pouring out my torn and shredded heart. It was 8 pm, time for my meds and I had just joined Adam in the kitchen. We hadn’t spoken in detail since the Social worker, Karen, (yes, I at last. have her name) had left on Friday. It had become a closed book, other than the odd words over how I had gotten the time wrong and so on. I was doing my usual, putting on a brave face and telling myself that I could manage this. After all, it’s just someone here to help me in the shower. The fact that it’s now just 4:30 am on Wednesday morning, should tell you that I am coping at all.
As is often the way, with the first word out, the rest just kept coming and coming. There was a stilted conversation while I tried to use my nebulizer, but as soon as it was done, then the truth started to flow. I have never given anyone even the slightest speck of control, since, I walked away from my first marriage. Something Adam was aware of from day one when it took over his life as well as mine. Like it or not, he was going to have a job, eat proper meals and be part of my world. I didn’t mean any harm by it, and he somehow knew that even before I told him about my lifetime of abuse, from childhood to meeting him. But when the floodgates were open, there was no closing them.
Today isn’t just about getting help, it is about asking for it, about the beginning of giving away that last independence that I have, and that is so huge, it is suffocating me. I apologised for not letting him help me, I went through all the reasons, all the things that I have justified in my head about why I couldn’t do so, even though I knew all of it is stupid, I still can’t do it. I told him in ways I don’t think I have ever told him before of the pain that I feel, not physically, but mentally because of this stupid illness that is killing me, as there is nothing that I or anyone can do about it. Between him handing me more and more tissues, I admitted just how scared I am about losing even the slightest bit of control I have left. As I blubbed and he held me, I suddenly realised that the look on his face was reading in not the way I expected, there was something there, that made me stop for a moment. “I’m not giving up, I am not going to let this beat me”. He took a deep breath, “I’m glad that you said that, as I was beginning to think this was the start of the long goodbye”. He could read my pain, but had lost my determination to go on.
For me, this handing over control is like stepping back, into a time that I fought so hard to escape. He tried so hard to tell me that I am still in control, that they are here to help me, not control me, but it doesn’t feel that way. We both realise now that we chose the wrong day, again because I am led by what other say. Either Adam should have been off for this first visit, or we should have arranged it for the Sunday. Having him here, even in a different room might just have made it that bit easier. He is the only person who I trust to take care of me, to guide me and to think for me. As my brain gets more and more muddled, I need his to keep me on the right track, to fill in the bits that I miss, or don’t understand. I know that I ask a lot of him, but he keeps telling me that he wouldn’t have it any other way. He fell in love with me and chose to take the vows that he is more than happy to live with, in sickness and in health. We have just been unlucky that it isn’t the latter.
In the grander scheme it is a tiny thing, but last night I asked him how many more mornings I had to take the Steroids. His answer was just one more, so I double checked with him that he meant that yesterday morning was the last, or was there another. Either I miss read his words, or him mine, but either way, the results was wrong, I have another dose this morning. As I said small, but those sort of confused screw my head big time. Just like the mistakes during the Friday assessment, if the detail is wrong, I will fret unknowingly, somewhere in the back of my mind, desperately trying to make sense out of something that doesn’t add up, but I don’t know why. We spoke for nearly an hour, going over feeling and the help that I need from him to survive what is, after all, a totally new phase of life for me. He now understands that I need him to be accurate, to not miss what I don’t see. To guide me even more than he has done up to date, plus to double check that I really do understand, that I’m not just brushing it aside or not hearing his, or others words.
Right now, and not just because of the time, I should be resting, I am in the midst of a flare, dealing with a body that is making all of this harder than it would have been just a month ago. I should be resting, letting my body have the best possible chance of healing, but instead, I am stressed to a level I haven’t felt in years. I can’t do the slightest thing about it, other than to go with the flow, to do what I have to and to survive it all, as I have done up to date. I know one thing for a fact, today isn’t the day, that I started that “long goodbye”, one day I will, but I am still a long way from it, especially, if I can get my head around accepting the help that I so desperately need, and Adam can’t give me, not because of him, but because of me, which kind of makes the whole thing harder, as it is myself, that is letting me down.
Please read my blog from 2 years ago today – 09/06/2014 – Muscles, what muscles
All too often things happen that you don’t even notice until suddenly something happens and you realise the truth of what has slowly been happening all along. I was lying down yesterday with my feet drawn up so that my knees were off the bed and in the air, I don’t know why I suddenly put myself in that position as I haven’t lain in bed like that for years. But there I was with my both feet flat on……