Changing the impossible

It appears that although my fall the other day didn’t hurt me, it’s spin off did more damage than just break my crystal bowl. Adam is once again to be worrying about the “what if….?”, or “what might……?”, and any and every “But……” you can think of. It has even gone as far as him asking me when I was about to climb into bed on Tuesday, “How am I going to be able to go to work if you are going to be falling like that?”. One of the things that I thought was going to be curbed by my taking to wheels was Adam’s worrying about me. One silly little fall, in which I didn’t even receive a single bruise or the tiniest scratch, and we are right back at square one. What is so annoying, is if that silly little bowl hadn’t been broken, not only would he not know that it even happened, neither would anyone else. That is how minor and irrelevant it was, it was totally unnoteworthy.

One of the hardest things about living with chronic illness is not what it does to us, but what it does to those who love and care about us. Every day that we are ill, they suffer too, and at times, I think they actually suffer more. Not having ever been on the other side of this situation, the only thing that I can compare it to, is the love and caring that I had for my children when they were small. I can remember the feeling of sitting there beside them, so tiny and ill. Sitting there looking at them, stroking them, and feeling totally useless, as there was never anything that I could do. When my son was dying, I held him in my arms looking at this beautiful sleeping child and wanting to switch places with him. There was nothing anyone could do, and knowing that, just made all even harder. It has to be the point in my life where I felt the most useless and powerless of all. I may not be dying right at this second, but I can only imagine that daily, in a lesser way, that is what Adam goes through. For a long time, I thought that the fact that I could tell him, and that he could see, that I was fine, then he had to believe and really see it. He doesn’t do either. In his head, it appears that whatever I say, he decides for himself, what is actually happening. He has somehow decided that he is responsible for everything I do, and everything that happens to me, whether he is here or not. That it is somehow, his responsibility to protect me from an illness that no one can cure. I recognise that sort of madness, I recognise it because it’s called love and yes, it is adorable of him, but it isn’t required.

Love is like that, it is not only the most wonderful feeling that we can ever know, it also often, at the very same moment, the most painful and the most destructive feeling, we will ever know. Emotional connection and commitment are unbelievably difficult to control, in any way, even by ourselves. The chance of my being able to control someone else’s love is zero. Yet, it appears, that is the only possible way there is of putting his mind at rest. What more can I do than what I already do? I have shown him over and over that I am capable of caring for myself unless something unexpected happens. Which actually makes me identical, to every other living person on this planet. Just as you could fall today. I might not, it’s the luck of the draw and that is a reality that we all share, ill or not. But still, he thinks that he has to be here to stop things happening to me. Oddly, it has become worse in the last couple of weeks. It is as though my wheelchair has somehow woken him up again to the fact that I am disabled.

At weekends, if he was up before 11 am, I was sure, that there was pig flying over our house. The last couple of weekends, he has been up and about at the same time as me. He doesn’t fill up the bottles with coke and put them in the fridge, as he does during the week. no, he has been running back and forwards to fetch each glass as I need it, keeping me sat here, unmoving and unable to land up in any sort of accident. I haven’t said anything, what would be the point. He is going to behave like this until he manages to get the biggest thing that is missing from his brain in there. I am less likely to have an accident now, than I was a month ago, as now, I am sat down. When I do stand, the maximum steps that I take without sitting again, is 5. Five steps, where I am always totally surrounded by solid walls or furniture, which I can hold on to. It is all so back to front that I am at a total loss.

The most stupid part of all of this is a fact that I am sure he isn’t even aware of. The more I watch him worry, the more I see him scurrying around me as though I am made of porcelain, the more I worry about him. I know, because I always hear him, that he sleeps with one ear open and should I wake, he wakes. I know it is his nature to have a lazy streak, but here he is living totally out of his normal. Pushing himself every minute of the day and night, to be there in case I need him. I know that worrying isn’t good for anyone, especially when they do nothing else. Right now, he is doing absolutely nothing else. Instead of him now seeing what I see, someone who was pushing her luck daily, now safe and out of danger. My wheelchair has been like some kind of fluorescent reminder of just how ill I am. Granted, all the new meds will have brought that home to him as well, but he can’t stay like this, it isn’t good for him or me. Last night, he even apologised to me for the fact that for some reason beyond both of us, our oven wouldn’t light. It’s not his fault, what was he apologising for? That is a question that I do know the answer to, he apologised because he wasn’t able to make my world perfect. Sorry sweetheart, you can’t do that, my health has seen to that, not you.

The longer I am ill, the more I see just what my health is doing to him and that to me isn’t just wrong, it’s unfair. I tried so hard when I was diagnosed not to once say things like “I can’t cope, because of my health”. I don’t think that I can remember even asking for his help, until not long before my arm died and I became housebound. I didn’t do that because I was being strong or pig-headed, I did it as I saw no reason for his life to change, until it totally had to. I knew the day would come when his care would be needed, his freedom to be himself, to me was more important then, than my health. It was going to do whatever it wanted, so every day of normality for both of us had to be held onto, and enjoyed. To me, we are still less than half way there. Yes, he has to do a lot that I can’t, but I am still capable of being independent and I believe for the sake of both of us, that is how I should be. I don’t know how other people manage their health as in its impact on their partners, but I still see him as 100% that, my partner. He isn’t my servant to order around, and I hope I never ever do that, even by accident. He is slowly becoming my carer, but nowhere near the point yet, where he is my nurse. It is a relationship that is fluid and has to be, but it is also a relationship that is formed from love, and must never be seen as a duty, by either of us.

When you marry, you never look forward into your life together and see anything like the marriage we now have. We’ve only been married for 16 years, 14 of them has been spent with the monster of PRMS hanging over us. So in some ways, the time that most couples get to spend cementing their relationship has been spent with this added angle. For me, there is always going to be an unavoidable guilt, the guilt that told him once to go, as it simply wasn’t fair on him. Adam was just 21 when we married and I didn’t want him to look back and resent me. I doubt there is a relationship out there in our position, that hasn’t gone through all of these stages. Couples, who have worried equally about each other and wished the other could see it from their side. From what I have read, those who make it as far as we have, well they all have different ways of dealing with things, which isn’t really helpful. The truth is that relationship analysis is rarely of use, as no two couples, far less two people are totally the same. Love they say is blind, it has to be to survive the cruelty that life demands that it endures and still stay there strong and forgiving. If there is one thing that love and all emotions have in common, is they are anything but logical. On that basis, I don’t stand much of a chance changing his worry into settled and content, as all I have to fight it with is logic.  I don’t have the answer, to stopping him from worrying about me every second of his life. If you do, please tell me, but I expect that the truth is, it’s just the way it’s always going to be, but hopefully, he will settle down just a little, soon.

Please read my blog from 2 years ago today – 01/10/2013 – Nature or nurture

It’s going to be a mixed up week and I know that already, simply because Adam was off work yesterday, with him working for the local hospital he gets the local holidays, I can’t even keep up with the….

Controlling Reality

Another night when I ran to my bed as soon as the TV let me,it’s mad the way that we let that box in the corner rule our lives. I know you will say why not record but I record all evening all evening the best of what I’m not watching, that way I have reasonably good stuff to watch during the day. I was really in a mess yesterday and the day before from about lunch time onwards, just like both day’s I really don’t feel that bad at the minute, but I am just waiting for my brain to shut down and for me to get lost in a fog filled cavern with custard up to my waist. I couldn’t order my thoughts or manage to keep getting things done, I just went round and round in circles, not completing things and not knowing what to do next. When things are that bad it is a strange place to be, on some levels you don’t care as what is there really to care about, I’m alive and able to situp so I’m OK, but then there is this feeling that I am out of control and I have no way of sorting it all out. I feel numb and as though there is the huge bag of cotton wool around me, keeping the outside world away from me, but not allowing me to get through when I want to. I sort of float from one place to another pulling myself in line for a few minutes, then loosing the control again, and I am just waiting for the day to pass as fast as it can so that maybe tomorrow I will find my personal balance again.

I am sure that many people spend their lives there and I maybe I will one day to, and would that really be that bad? To be honest that is a hard question to answer, when I am clear enough to think it all through and what it would really mean then maybe at this level I could live there. If it was worse then yes it is that bad, and it is not a place I want to be, now or in the future. There are these levels of acceptance, marks in the sand that I don’t want to cross without a way back, anything is acceptable if it is limited, if you have the reward waiting at the other side, that there are good spells to take shelter in. Without those clear areas, it is really hard to know what it would be like there for ever and more intensely than anything I have been through so far. What I do know is if I was in the really bad phase, worse than what I have now, I would need someone with me all the time and that is the place I don’t want to think about. Strangely it is actually something that I and others would have to measure it by would be a case of do I have enough about me not to put myself in danger, as in not burning the house down by trying to cook something, rather than looking at the things I can do. I just had this silly image in my head of myself sitting on the floor in front of our gas fire with a pan, if I’m that out of it, please world line up to shoot me.

Everything seems to gang up on me when I am in that type of mess, it is almost as though it is a conspiracy by my entire body, the pain levels rise all over me. The other day I mentioned needing to use my catheters again well they are part of it as well, everything just stops working. Last night when I went to bed the pain everywhere was nuts and that included all the pressure and pain spots across my entire abdomen, proof to me that my bowel problems are all part of my MS. The only thing that was no worse or changed in any way were my lungs, but this morning when I woke my throat was tickly for the first time, once I had had my coffee it settled and now it actually feels a lot clearer, so not part of but possibly the catalyst. I am tired this morning just as I have been every morning recently and again I want my bed, so I guess I am heading for another afternoon and evening just hanging in there until I can sleep out the remaining hours and a new day has begun.

I know that the likely hood is that this is just a phase, or a flare coming from my chest. I know that in a week or so, I will probably have actually forgotten that it even happened, as that is the way my life is and one of the reasons that I write, as Adam reads and he will always be able to find the information that Doctor needs in here, even if my memory can’t find it in my head. Right now I have bad spasms in my left leg and I can feel the fog moving in minute by minute, so good bye controllable reality, we seem to be slipping a part again.