More than a partnership

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……

It’s important to remember one thing

Last night, in fact, not long after Adam came home from work, I asked him to take on the laying out of my medications. I decided that if I waited if I pussyfooted around arguing with myself, the result would probably be like many others. I wouldn’t do it. In the past, I have put off so many requests for assistance when they were clearly needed, that I know the pattern all too well. Hours spent trying to convince myself that my problem was a one off, even when it had happened several times in the past. Days trying to prove that I was up to it, that if I just concentrated totally, everything would be fine. Weeks of kidding myself, until it happens again and back to the beginning of an all too familiar circle. So almost as soon as he sat down on the settee, I asked him. I knew without a doubt that he would do it, that he didn’t really need me to explain why, as if I needed his help, he would give it. I, of course, still had to go through a discussion of what had happened the night before and to actually ask him if he would mind doing this for me. Sometimes, it doesn’t matter what you know inside, you still have to be firstly polite and secondly say the words, as without saying them, that final step hasn’t really been taken.

I was reasonably sure of what would happen, without any issues at all he set out my meds for me last night, while I watched over him explaining as he went why things were set up in my draw of drugs as they are. This morning also went as I expected, he was so far behind as he had taken too long in the shower or whatever, that he rushed out of the house without doing it. We will get there. I have already worked out the answer and it so simple that I wonder why I didn’t think of it last night. All we have to do is for him to sort out both my night time and the next morning at the same time, leaving my morning tablets sat in a medicine cup. As I don’t have any liquid meds in the morning, it is a really simple system and won’t have him remembering in a panic, once he gets to work. I am just waiting for either the phone to ring or for him when he gets home to apologize, something that’s not needed at all, but I know it will happen.

I suppose that it is inevitable that when you live with someone long enough, that not only do you know what they will do, but you also start to reflect each other. There is something within what I have just written, that on reading back suddenly made me realise that if we were to switch places, nothing would change. Life would actually be exactly as it is, we would still be reacting to each other as we do and our caring for each other would continue. Despite a list of reasons that have in the past and will in the future split other couples, we continue to just grow closer. I know there will be a million reasons for that, but one that stands out to me is that neither of us assumes when it involves the other and we always say sorry. Even though I can say with confidence what I believe will be Adams reaction or needs, as I am sure he can mine, we ask and we still say please and always thank each other. We also have a healthy respect for the fact that we can annoy the hell out of each other as well. No, we’re not perfect. But those four small things, somehow strike me as majorly important glue.

I actually remember reading those silly little cartoons series that were around in the 70’s called “Love is…..”. They were really simple, just a man and a woman, in Adam and Eve style, naked apart from fig leaves, but with a really cute aspect to them. There were two I remember, one was “Love is never having to say sorry” and the other was “Love is never having to say thank you”. Some might say they are right, in a way I get them, as when you are that close to each other, well the other will know, without the words being said. Just as I know even if Adam forgot to tell me several times a day that he loves me, I can see how other things might not need to be said, but saying them is our way of affirming exactly our feelings and the fact those feelings still exist just as they did the day we got married. I don’t believe that there is anything that doesn’t need to be said, choosing to do so just shows our total appreciation of the other and that even after 17 years together, we don’t take each other for granted.

I know that I don’t say thank you enough to him for all that he does, but that is actually down to him. Almost every time I do thank him for doing something I consider my job, he tells me that I don’t have to thank him. I know he doesn’t get it, but without saying thank you, there is a guilt that builds up, especially when I can see that he has had enough of lets say, cleaning the house for that day. Housework was always my job, but only because I was so fussy and as I remember him saying, I cleaned everything before the dust even settled. I know without a doubt it is a job he hates, but he does it and every now and then I still slip a thank you in and I still get told off. Being a couple when one of you is nothing more than a shape that fills a whole in the room, is hard. We don’t have what other couples have, we can’t go on holiday, or go out for the night and sex hasn’t been in our marriage for over 10 years. I could list and list all the things that we don’t have, but not one of them matters as we love each other and we never stop telling each other just how much. Neither of us is complete without the other and that is something that not even an army or illnesses can destroy. What we have will always be more than what we don’t.

The phone just rang, just as I knew it would and just as I knew he would be, he was worried that I hadn’t taken them. Every change that happens has it’s teething problems, but together we always find the answer, As long as we fix things together, solve the problems that our rather unconventional life throws at us together, then nothing can pull us apart. We’re not unique, I honestly believe that if you get through together the worst news that any couple can get, that one of you is either chronically ill or dying, or both, then you have what it takes to go on together and to survive anything life has left to throw at both of you. It just takes the ability to remember what brought you this far and will take you the rest of the way, the love you have for each other.

Read my blog from 2 years ago today – 14/07/13 – Walking the walk

I have so often wished that there was a machine that could record your every thought, so all I had to do was listen back to it in the morning and type my blog from my oh so perfect words, written in my mind as I went to sleep. I think since I was a child I told myself stories to help me fall asleep, back then and for most of my life they were the type of story that we all….

Everything is changing

Somehow it is Friday again, I don’t know why but until this second it had felt like a long week. That is honestly not something that happens that often, even with every day being the same as the one before. It actually amazes me just how quickly my days go in and how suddenly it is time for Adam to be home again. I am not complaining, not at all as I know that is part of the reason that I find being housebound that bit easier. I guess the theory that I set out three years ago was true, as long as you keep yourself busy and you have one person in your life that loves you as much as you do them, you can survive anything.

It used to be my greatest fear that Adam would just decided one day that he couldn’t take anymore of my health and that he would leave me. I kidded myself that I would manage, that I would somehow find the help that I needed around the house and that life would go on. I knew that I was kidding myself, but even knowing that I still did it. Despite being generally good at putting myself in the shoes of others, putting myself as housebound and alone is something I find incredibly hard. I have someone in my life who isn’t just my partner but is actually part of me, his not being here isn’t just unimaginable, it feels totally impossible as well. I think the other week when I was really ill was a huge wake-up call to both of us. I got the impression that it was the first time that Adam actually thought that he might lose me. I knew that because he clearly wasn’t going to be convinced on the first two days that things were really bad to go to work. He wouldn’t just not go to work, but he couldn’t help himself but to keep checking on me. I had it reinforced that although I might still want to be independent, I really wasn’t well enough anymore to be so. Up until then my health had been this slow decline, something that yes affected both our lives, but didn’t mean I needed a nurse. Adam had had to take on almost everything that I once did, other than those personal things, but we were still clearly two separate lives that needed each other to be complete.

It was our first taste of what we both silently know is ahead of us in a much bigger and far more stark future than we were at that point ready for. I don’t think either of us had thought about something suddenly wiping me out like that, we had had no reason to. I know personally that I was looking into the future as being this long gentle decline, with crisis situations somewhere out there near the end. I hadn’t at all allowed for sudden and server bouts of being so ill that just walking was a challenge. I never once thought that outside of a normal illness that anyone might have, that I could suddenly be confined to bed without even the energy to want to move. Just knowing that out of the blue that today or tomorrow I could be right back there again, without any control over it in any way, wasn’t something I had ever allowed for in my planned out future. But that is always the problem when you try to plan illness, it will do something to show you your plans are worth nothing. Although we haven’t sat and talked about it in detail, I think it shocked Adam even more than it did me. There has been some small throw away statements that he has made that show that he thought that I might not get better. Not that I was going to die in days, but that I might never be well enough for him to leave the house without fretting about me, even if he was just going to buy a pint of milk.

Personally, I know I didn’t think about much of any importance at all during that week I spent in bed. It would be fair to say that I didn’t actually think at all until the last couple of days as to the true impact of what had just happened. I realise now that it was a real game changer, even if it doesn’t happen again for a year, it has changed everything. It has shown me that my body is frailer than I thought it was. As I said yesterday if you had asked me I wouldn’t have said that my health hadn’t changed that much in the last three years when it very clearly has. I hadn’t held onto the knowledge of the past me, somewhere along the line my mind had airbrushed it and I had just carried on accepting that view. In the last few days, I have spent some time just thinking about the truth, about how weak my body is, how little I can actually do without resting. How much sleep I need to just to have the energy to do nothing. How easily I get breathless and how drained that makes me feel. I have thought about the different area’s of pain and what is behind them and how they alone have changed my life. I have put together in my mind a much more real version of me and, to be honest, I don’t like it, but I needed to see it.

Just because I can now see the truth, doesn’t mean that I am going to give into it. You can know something and at the same time not accept that that has to be the way it is. The difference is I now have a much more realistic view of my life and where it is going and at what pace. I am now more prepared inside myself for something like that happen again and how to handle it. Like everything the first time, something happens it is a shock and you just go with it. I now know what its time scale should be, how I will feel and what it will do to me and most importantly, I and Adam now know that I will get better. I think the biggest change is that I now accept that I can’t push myself day after day to do what I think I should. I have to accept that I can’t keep up the pace every day, every day has to be individual rather than a carbon copy of the one the day before. I have reached a point where a routine is still important, but that routine has to have a flexibility that it never had before. I have to stop worrying about letting people down just because I wasn’t up to doing something on twitter, those that follow me, well they will understand and accept that my output is now governed by reality, not the fantasy that I kept striving to maintain. My body and my brain are a shadow of my past and I have to live within their capability not my imagination.

A week in oblivion has changed everything, everything about me and my future will never be the same. Maybe I needed that wake-up call, the kick to stop and take a long hard look at my life and everything in it and around it. I am fading, I know that it’s not the way I wanted my life to end but few of us have a choice in that matter. Fading or not, I still have the most important choice and it can’t take it away, I still choose to live and to be happy, whatever it does and whenever it does it.

Read my blog from 2 years ago today – 3/07/13 – The family together

Yesterday was a day were in many ways I don’t really know where to start and for more reasons than one. I suppose the first thing I need to say is that it wasn’t just Teressa and Jon who where here but also my son Christopher, even those who have read for a long time won’t have heard me mention him, our story together is a huge complex and very painful one which…..

Beyond togetherness

Some things in life are meant to be easy, especially these days when technology has simplified and mechanised so many things, but it is actually not as easy as the designers believe. I wrote a post recently about my frustrations with our new “Smart TV”, or possibly not so “Smart TV”. In many ways, I have now learned most of what it does & doesn’t do, still things seem to be getting worse not better. I am coming to the conclusion that there is a huge gap in the market that someone could so easily fill and no it wouldn’t just be useful to people like me with no memory, I believe that with the huge range of channels and services, that nearly everyone needs this. It could be an app, or for me PC program or possibly a gizmo all of its own that allows you to see in one place all the programs you have already recorded, have waiting to record, might want to watch and always watch in one simple screen. I would bet my house on the fact that I am not the only one who just can’t remember all those things and lands up just getting in a muddle, double recording at different times the same series and missing the things I have seen advertised as I can’t mark it in any way to remind me unless I am willing to miss what I am watching, just to set it up on the reminder service, so I then land up spends ages scrolling screens trying to remember the channel & program name. Then of course, there is the problem of those programs you couldn’t record or watch at the time it went out, so I then spend time trying to find it on ‘On Demand’, only to find it isn’t available. How did just watching TV become a major logistics issue? Even as an ex Operations Manager, I would have had to build a program to track that lot and I can’t do that any longer for a range of reasons.

Between my memory issues and a body that is not able to do what most can, I really do feel as though I am being let down by the world of technology. I was always a person who was more than happy to embrace the new and although I know it is all part of aging that means we look at the new and ask “Why do I need that?”, simply because what we have does everything we personally need, but I now also feel that I am forced into ‘change’ whether I need it or not and all too often it actually makes life more difficult. It is totally understandable why companies like Microsoft change things every few years, they are in business to make money, so stopping support on older versions also makes sense to them, I am dreading the day that this PC dies or Windows 7 becomes obsolete. The whole idea of having to learn a totally new system in a version that won’t give me the things I once used with ease, fills me with dread. My brain is already happily ditching things left and right, how I would get it to hold onto something totally new, well I am sure you see the reason for my fears. I know the world can’t stand still and that isn’t what I am asking for, I just ask that when they change things, that they maintain what those like me can at least recognise, rather than them throwing my baby out with their bathwater. Sorry, I am ranting again, promise that it for now!

Adam isn’t well this weekend, he seems to have picked up some sort of bug which of course, has me just waiting for it to hit me as well, so far so good but it really has knocked him for six. He spent almost all of yesterday asleep either in bed or on the settee, about the only thing that he did yesterday was to find my missing earplug, I had taken it out and just dropped it on the floor, but something that small isn’t easy for me to see, so once he got up yesterday and read my blog, he went and found it for me. Last night with him more than happy to just sleep, really would have been a perfect evening for me to have taken an early night, but once again I didn’t. I don’t know why I do this, but it has happened again and again, the main evening viewing is over, there is nothing else on to watch live, so I find a half hour pre-recorded nothing to take us through to 9pm. Half way through I suddenly realize that he isn’t watching and I am suddenly exhausted and could have been asleep, but having started the program, I won’t waste it and watch to the end. I would say this happens at least twice a week and neither of us ever have the sense to say, I don’t want to watch that or do you mind if I just go to sleep. Why is it that couples never really say these things to each other I don’t know, but it is something I have noted through every long term relationship I have ever had, we don’t want to step outside what is our couple routine and just say “can we do this differently?” I know for me that part of it is the preciousness I feel for the time we actually have together and I know Adam has said the same thing, but I also know that he feels a degree of pressure added on to that by me. It isn’t something that I do directly, it is because I spend so much time by myself, the only person I see, is Adam and that puts a twist in our relationship. It is hard for anyone who isn’t housebound to imagine being on their own every day from half an hour after waking, right through to 6:30 ever single night when the only person you have spent more than 20 minutes with for the past year, comes home. In 7 years of being housebound, I can add up with ease the number of people who have been here in my home with me and that includes workmen, medics, and family. If it wasn’t for Adam, I could go months without seeing a single living being and that is pressure, whichever way you look at it.

When we met, both of us knew there was something different about our relationship, it was strangely intense and perfect from the very start, despite many, many reasons that it shouldn’t have been. Neither of us could possibly have foreseen what would happen in the future, but I can honestly say that I don’t think I could have lived like this with anyone else I have ever known. As I said it is an added pressure for both of us, for me it is having to remember that there is a world out there that he is part of and has to remain so for his own sanity. I have to never try and stop him from doing anything, no matter how much I would prefer him to be at home every second he isn’t working, that just isn’t realistic. I do everything I can not even let him feel or see if I am disappointed by him wanting to live and see people, but I know he feels that, as he always double and triple checks that I am OK with him going out for coffee with his sister or whoever. That equally shows that he has a miss placed guilt over leaving me alone, there is a circle there that both of us have to work with that I know I have never felt any other time in my life. We are at the start of our 8th year of living like this, can you imagine standing in our shoes with your partner for that length of time?

What we have as a couple is special and I realise is also probably something I should talk about more as it really is one of the elements of chronic illness that although there in what I write, maybe not shown as strongly as it should be. There is one thing that I have no doubt of and that is that you partner can mean the difference between sanity and insanity, when you are locked into a space that there is no true escape from, they become our lifeline and our life.

 

Please read my blog from 2 years ago today – 18/01/13 – Lost and trapped in one 

I had everything ordered in my head when I got up, exactly what I was going to write about and what I was going to say, then I started wondering. Not in my mind but around the house, sitting in each room without having a reason to be there, just sitting………..