“I” have become “We”

It was just past 3 am and I knew I was going to have to get up to go to the loo. This was going to be my first middle of the night visit since I had acquired my new transport. As I stood up to put on my dressing gown, I felt a drip running down my leg, followed by another and then another. There was no time for dressing gowns, or to even sit in my chair, as without a doubt that would be the worst thing that I could possibly do. Holding your bladder back is partially possible when standing, sit and I knew that I don’t stand the slightest chance. As fast as I could, I crossed the hall for the bathroom, aware with every step that there was also a drip being left behind me and with each drop my heart was sinking. As I reached the toilet, I had heard Adam waking up, if what was happening wasn’t bad enough, this meant without a doubt that he too would also be aware of it all. This is the second time in just a couple of weeks that I have lost control in the middle of the night. The first I put down to just plain bad luck. It wasn’t the first time ever that it had happened and I was sure that it wasn’t going to be the last, but not so soon. I can go months without even having to think about my bladder, other than the fact that I normally can’t actually empty it. In fact, I had been through that problem just earlier in the day. It doesn’t matter how long you have been ill, or how much your partner loves you and understand, there will always be things that mortify you ever single time that it happens. For me, this is one of them.

Looking back on it, what I did next seems quite odd, but it felt like the right thing to me. Once cleaned up, I went back to the bedroom and got into my wheelchair before heading back across the hallway to the kitchen. I know I could have just stayed on my feet and turned the corner between bathroom and kitchen with ease, but getting off my legs and safely back on my wheels, was top of my list of priorities. As I sat having what was a deeply needed cigarette, I heard Adam cleaning up what I couldn’t, which didn’t make me feel any better. He came into the kitchen to see that I was OK and didn’t say a single thing about what had just happened. What did I do to deserve this man?

We both know and knew this was going to be our future, but that doesn’t change those feeling. Those things that are instinctively sitting there inside us, just waiting to make us feel bad. I know that time is closing in on me, and that that time I had put down as away somewhere in the future and didn’t have to be thought about just yet is slowly arriving. That is one of those horrid things about chronic illness, there are so many of those in future points. When you are first diagnosed you read all the things that are there waiting to happen and dismiss nearly all of as somewhere off there in the distance. Then the first one arrives, it isn’t expected, or acceptable, all you want is to make it go away. At first sight, you mark it up as a one-off, or something that might happen again, but not tomorrow or the next day. It might be closer, but it can’t be here to stay, not yet. On its second appearance, well you still keep kidding yourself, trying to tell yourself that it can’t be that bad, it has to be something you can control. We hide and we hide again, but no matter how much hiding we do, it’s still there and it’s just keeps getting worse. Slowly it chips through one layer at a time, sometimes moving further into our lives, on others we find new and hopefully stronger layers, ones that this time, it surely can’t breakthrough.

It doesn’t matter what the symptoms are, what it does to us and how much of our lives they manage to take over, we still colour all of it with stories that permit us to keep going. It’s part of what others call our strength, it isn’t our strength at all, it’s plain simple lies. If you don’t fully admit the truth, then you can cope with anything. The people each year who receive those glitzy prizes for acting, shouldn’t go to actresses and actors at all, they should be given to us, the chronically ill of the world. I have learnt to put on prize performances without even being aware that I am. It becomes so much part of you, that not doing it, would be probably far harder. Yesterday, I poured out truth after truth. Admitting all the thing that I had hidden from myself because hiding was easier and allowed me to live day to day with the illusion of normality. It wasn’t until I sat and thought about it, that I realised that the only person I had been kidding was myself. Adam was clearly aware of it all, he knew how much he was doing for me each day. He didn’t need to sit down and make a list, as he is living that list. It was only me who was living some kind of fantasy life. Looking back, I have done this over and over again. With each new symptom, I have played this odd game of denial. I say odd because clearly I’m not an idiot, I knew what I was facing, but by denying it was happening right there and right then, meant I could put off dealing with it, just that little bit longer. I always had to clearly deal with the physical aspects, but that didn’t mean I had to deal with the psychological aspect it brought with it.

I guess we all have our wake up days. Whether or not you write a blog or are just in the middle of trying once again, to get past that point in your day that is getting harder and harder to deal with, that wake up call will arrive. They are like blinding lights that steal more and more of our lives each time they appear. Suddenly, you discover that that point that was once in the distance, has actually been crossed and not just by seconds, often by weeks. Bang, you have reached a new level of disabled and that always hurts. It is over 14 years since I made that list of milestones. What I have woken up to in the last couple of days isn’t just how many more I have passed, but how close together so many of them were and how so many of those still ahead of me are. I though milestones had years between them, I was wrong. They once were, but now they seem to be in clumps. Losing your ability to do one task, actually when you look more closely, usually means you lose the ability to do a huge range of things.

A doctor might ask me, “Can you dress yourself?”, but although I would answer “Yes”, what I am doing is hiding. “Yes,” I can dress myself as my clothes have no buttons, no zips, no laces, or hooks and eyes or fastening of any sort. If all of it is loose, made of soft stretchy fabrics and can be pulled over the required part of my body that needs covering. In essences, I told no lies, I just didn’t answer the question that was really being asked. If you think of all the actions that I can’t manage within that one milestone, well you see not just a couple of difficult actions, but a huge range of everyday tasks that I can’t actually do any longer because of one thing, dexterity. Within all that, you find also a clump of skills milestones, all stuck together and hidden by my answer. I know exactly what the doctor would be really asking, but he doesn’t know that I spend my life in pyjamas and dressing gowns. Fashion these days makes it hard for people to know what you are wearing, my clothing has been the same for 6 years, at home or at the hospital and I always get away with it. By answering that one question with a “Yes”, I am also lying to myself, as I can push that milestone away again by simply ignoring the detail. Take that game and spread it out over my entire life and I can appear to myself and others as not that badly affected, when the truth is the opposite.

Once more I find myself looking at my life and wishing someone had sat me down and explained what the truth of a diagnosis with a chronic condition really meant. If someone had just explained that the milestones of any condition actually affects so much more than that tiny bullet point in a list made up by clinicians. Clinical milestones are as pointless in the real world as an ice axe in the Sahara. Illness isn’t just clinical, it’s real lives in a real world, it people who have lives to live and how they manage that can’t be measured by medical milestones. Once the majority of our life is in the hands of others, even if that is to simply set things up so we can manage our day, we can’t even be measured by the ones we create, as there is no longer a measure that matters. Does it matter medically or in any other way that Adam now sets up small bottles of Ginger Beer and Coke so that I can have a constant supply to drink while he is at work? It matters to Adam and I, and yes it does say something about my degree of disability. But what it really says is that I am cared for, that although I can’t cope, we can. I had missed that. That is the big change, not my wheelchair, or my wetting myself, or any of the other things. What matters is that “I” have become “we” and right now at this level, “we” are comfortable with it and need no other help.

Please read my blog from 2 years ago today – 18/09/2013 – Shhh!

The final required signal that winter is on its way, I am now eating porridge in the morning! Somehow getting up to find the house cold there is once again a need to eat something hot and tasty, I’ve never been sure why we all go looking for…..