A never ending circle

Building a new life is hard. Building one, when the only components available to you, aren’t the ones you want, is even harder. It’s something that we the chronically ill, have to do again and again, as slowly the things that we hold precious are taken away from us. It’s about six months now since I found myself having to give up my independence in a very personal way, by inviting a total stranger into my home, to shower me. Trust me, if you haven’t got to this point yet, it’s a huge step to find yourself taking. Going through the mental process that says there is no other option, is huge. Especially when you have someone right there in your home, who is more than willing to help you, but you just can’t take their help.

There really are something’s in life, that sharing with your husband, is one step too far. I may have been disabled for years now, but not once has Adam seen me naked, since my body fell apart and then ballooned. The last time he was in a shower with me, well let’s just say, getting clean wasn’t high on our agenda. Memories, that I prefer we both kept as they are, rather than letting my new reality, destroy them. I knew that every shower I had with someone else helping me, hurt him, but I couldn’t bear it any other way. It has taken me six months, to bring the size of that guilt, down to a manageable size, and to actually feel that I wasn’t doing it, to hurt him. It has also taken just as long, for me to not see the pain in his eyes when I back into the bathroom on a Saturday with my carer helping me. On Monday, I found a new guilt, the guilt of having someone, other than Adam, here to cook my lunch for me.

It seems to be a recurring theme, from the day I was diagnosed and realised that it wasn’t just my life, that was being turned upside down, but his too. The knowledge that my gorgeous twenty-three-year-old husband was suddenly married to someone, who couldn’t possibly be the wife, he thought he was marrying. That all those plans and dreams, were nothing, nothing but just memories of a life we would never live. All those invitations, the outings, and parties that we never went to, because of me and my health. Hardly a day went by when I didn’t feel guilty. Those days slowly stretched and became weeks and finally months. Being housebound threw a spanner in the works and I became guilty again, big time guilty, like no other guilt I had ever felt. When one part of marriage becomes housebound, so does the other. Yes, he has his working life, but little else, because he now feels guilty, about leaving me behind. Guilt appears to be contagious and every time you think you have it under control, it reappears in a new and twisted form.

I thought that when I asked for help with making lunch, that I was keeping myself safe. That I was putting Adam’s mind at rest, that nothing could happen to me when he wasn’t there, but from the day I asked for help, he suddenly came home every lunchtime, to do it himself, until that care could be arranged. Every time he came home, he said that he didn’t mind and that he was happy to be doing it. Despite the fact, that he had to rush here and back, during what was meant to be his lunchtime, his chance to relax. So now, I feel guilty for doing something that I thought was good.

When Laura arrived yesterday morning, I was pleased to see her. I had it all planned out so that I could teach her just what needed to be done, where everything lives in our kitchen and just what help I needed. I thought that it would feel good, good because I was taking positive steps. Steps that would make both of us happier, but I didn’t feel good, I felt guilty. Yes, I was happy with Laura, she’s great, everything that I was looking for in a carer, bright, friendly and willing to do whatever I needed. She made me feel safe, and she made me feel at ease, but I over all of that, I felt guilty. My wonderful, eager to help husband, wasn’t there. Without a doubt, I knew that he would be thinking of me and that he wouldn’t be feeling the way that I wanted him to, free, he’d be feeling left out.

We have talked many times about having both outside care and his care, can work together. How outside care, is about caring for both of us, giving him the freedom of choice, and me the freedom to be with other people. What we have never talked about is the guilt that goes with it. I know my husband, and without a doubt, he is going through just as muddled a range of emotions as I am. He will be hurting, that I have once again, chosen a complete stranger over him, yes, that is how he thinks, because he is human, but he will also be feeling guilty that he isn’t here and that he is having time off, from worry. Well, he will, when he stops worrying about how I am getting on with the carer. As I said, I know my husband, and I also know that he knows me, but we don’t talk about it.

Chronic illness is an emotional minefield and no matter how much you love each other, you tiptoe around those mines, in the aim of not upsetting the other. The last thing either of us wants is to tread on one, life is tough enough without that. Don’t get me wrong, we do talk about those important subjects, but when you know that the lifetime you promised to each other, isn’t a lifetime at all, then you tread more lightly. Plus emotions like guilt, well they are personal and talking it through would take more than the lifetime we have. We could talk forever, but without a doubt, our personal guilt will remain, because it’s a nasty little emotion that logic has no bearing on. Just like this crappy illness, it just has to be lived with but it has to be kept in check and occasionally written about.


Please read my blog from 2 years ago – 26/10/2014 – Drugs, right or wrong?

During yesterday afternoon I received a tweet that at first made me laugh, not because it was intended as a joke, but because of my last two posts. Two days off writing about improving understanding of chronic illness with those who aren’t actually ill and the simple changes and support that could make…..