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…..

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