I spent most of yesterday afternoon, making my Psyllium pancakes. Adam hadn’t been happy about me making them when he was out, he wanted me to wait until he was here today to help if I needed him. It took some convincing, but I managed to get him to accept that I was perfectly capable of just stopping and lying down when I needed to. He finds it hard to let me do anything by myself, he for some reason is always concerned that something terrible will happen and he won’t be here to help me. Actually it’s not for “some reason”, it’s because he cares and loves me and doesn’t want anything bad to happen to me. I do understand that, but it’s hard sometimes just accepting that and just to let him help me more than he does, simply for his peace of mind. Living this life is often a balancing act, between what I believe is possible and what Adam believes is impossible. I guess every couple who is in our situation has the same issues, the same desires and the same problems. I often think that being on my side of the scales is the easier one. I may be the one in pain, unable to do most things and easily tired, but I know all that and it is me that feels all of that. He can’t, he has to guess and assume then just watch and worry. If that wasn’t bad enough the worry only grows when he isn’t actually here to do the watching.

He was right, but I knew that before I even started to make the pancakes. It’s a long slow job and I am not up to doing it all in one go. Once I had made the batter, I went to bed for an hour while the yeast did it job and turned the solid lump that Psyllium forms, into a light fluffy substance that is easy to spoon and stretch into pancake forms in the frying pan. After an hours cooking, I was only half way through the quantity I had made and I was once again shattered. One of the beauties of this stuff is that it will keep for several hours, just cover and take a break, it will be fine. By actually just taking my time and doing it bit by bit, I got the job done without collapsing, falling or any of the other things I knew was running around in his head. This morning, I am paying the price. My pain levels are high and I am tired. Despite doing everything I needed in the kitchen while sitting on my perching stool, my legs and ankles are killing me. I am not the slightest bit surprised by any of it and I am sure he knew this would happen as well. I am sure that many who read this who aren’t ill will find my determination to put myself through something that would cause so many issues, as more than odd.

On the surface, I can see that. In fact, if Adam and I were in the opposite position, I would have argued it to the last minute that he shouldn’t do it. Adam knows that doesn’t work with me, argue with me and all I do is get angry and more determined that I will do what I want. He knows it as well as most chronically ill people do, our independence is incredibly important, as important as breathing. If there is something, anything that I can do for myself, I want to do it. The price I pay for that is just something that I accept. I accept it as I know that whatever the task is, I will have the satisfaction that I have done something by myself. My independence is precious. So all I did was make some pancakes, not exactly a big deal, but I did it all by myself. OK, it was in stages and I am paying the price, but I was for a few glorious hours, doing something other than sitting on my backside in front of a computer.

It can be difficult when your partner becomes your carer. Right now we are still stepping up more and more what Adam does for me. Every few months his support is needed more and my independence becomes less. Not because I am getting lazy, but because this illness is stealing more and more of it, and more and more of me. I know that he is happy to do whatever is needed, but it’s painful for both of us as we are both witnessing my decline. Adam knows perfectly well that when I ask him to take on something new, it is because I have no other option. Which just makes it harder for both of us. I can’t step into his mind, but I can empathise and at times he has slipped and I have seen it. No matter how much he says he doesn’t mind, I know that on some levels, he really does. No one wants a million jobs dropped on them that will eat up their once spare time. I admit that I held onto many for longer than I should, just for that reason. But the point eventually comes when you have no choice left. It has been and still is a long painful process for both of us. Our roles have changed so dramatically from the ones we had when we married. I was the carer, the homemaker and the breadwinner. Now I am none of them and he is all of them and so much more. Everything changes when your brain will no longer cope with even the little things when you have to ask someone to be your proxy brain. That is one thing I can’t imagine, how it feels for him to be doing things like reading my mail and sorting out my meds because my brain can’t deal with it. I can fully empathise with him over all the physical stuff, but being someone’s physical replacement is one thing, being someone’s mental replacement is totally different.

Without a doubt, both of us are walking the same tightrope wire. It doesn’t matter if it is the physical help or the mental assistance, both have a huge psychological impact on both of us. Neither of us want to hurt the other, or even upset the other, but we both have very clear and often opposite views of what I am able to do. That is the tightrope, I have asked for and given him permission to take over so much of my life, but I still need my independence. It is a hard balance for both of us and I am very aware of it from both our sides. Once you are on that tightrope there is no way off, no way of turning it back into a nice wide road. Well, except if my brain checks out totally, but other than that, our future will always be a balancing act. We are always going to be protecting each other and doing and saying what we think is right, regardless what the other thinks. I know that if I find it odd having someone else having so much control over what I do. I also know that he must find it even odder to be so much in control of another person. We didn’t choose to be in this situation any more than I chose to be ill, but here we are, tiptoeing around and trying to do what is right. I fully admit that at times I let him have his way, even when I don’t actually agree with him, but sometimes we have to accept the help we don’t want, to get the help that we do. It avoids disagreements and loud unmistakable exasperation and it lets me demand my independence when I really want it.

All marriages are partnerships, ours though has become somewhat unbalanced. It’s hard to sit and take and take again when all you have ever been was happy to give. What I can give now is so little, yet somehow I still feel we are a partnership, that we still share and we still care for each other and we still feel like equals. It’s an odd one, though, as it’s not like any other partnership that I have ever come across before. None of us marries expecting to be in either of our positions. It is a thing that is out there in the dim and distant future, something that old age might bring your way, but not expected. For a marriage to last through chronic illness seems to be about a fifty-fifty chance. We have been together over 16 years and it’s now 14 since my diagnosis, we have had our ups and downs like all couples, but there is one thing that I believe is true. Our relationship has been made stronger by my illness. I once feared that it would be the end of us, that he would run in fright of what it all meant, but that was a long time ago and didn’t last long. I guess the truth is that there are no handbooks on how to make your marriage last through chronic illness any more than there is one for surviving that chronic illness itself or being a carer to the person who has it. We all write our own ones, as being individuals means we can’t write it for anyone else, all we can do is try and give hints.

We haven’t reached and are still a long way from the end of that tightrope. What I know of our future tells me that it will only get harder. I will on my bad days need him more and more to do even the basic things for me. On my good days, I know I will insist that I can do everything myself, despite the fact we both know I can’t. But that is life with a pigheaded ill person.There will be days when we will be exasperated with each other and days when we still totally adore each other, probably a few which are both. If there is a secret to making this life work I guess more than anything it is just holding onto the love you have for each other and to push through those bad times, as the good ones always come around. We both know that I will have to hand over more and more of my life into his control, that he will have to take on the few things that I still do. We equally know that I won’t let go of them without a fight and if independence comes down to just brushing my own hair, I will brush every single one of them alone and be happy.

I have found great happiness in both my marriage and even the situation I find myself in now and that has a great deal to do with my fussy, fussing and frustrating, but always adorable husband.

Please read my blog from 2 years ago – 09/08/2013 – Time to face it

I spent some of yesterday making decisions, not major ones really but ones that have actually made me feel that bit better in myself. I set to on the list of bookmarks that have been haunting……