It’s my life

I guess it time to try and get life back to normal, with the Easter weekend now over and Adam back at work, as well as Teressa and John back in London, normality is all that is left. There are always mixed feelings when life has been busy, to it returning to solitary and quiet, as much as I hate that I am alone, my health always improves with simple, peaceful routine. I know for some that the isolation of becoming housebound is hard to accept, I have heard from many who clearly have become depressed by the whole thing, but somehow I have adjusted to it, maybe because I was willing to and yes my slow slope downwards into being unable to spend long periods of time out of my home, before I couldn’t leave at all. I am still convinced that it is mainly down to the fact that I have always been accepting of what I have, rather than wanting what I can’t have. I know some see my attitude as being hard on myself, but I don’t see it that way at all because it isn’t anything like that.

If when you become ill you just sit back and say this is my life and I don’t like it, you are set for what is going to be a more than difficult process to get through. Yes you have to accept what has happened and what is going to happen, but that isn’t the same as giving up, nor is it fighting it, it is quite simply living the best way you can, with what you can’t change. I am not willing to be a victim, nor am I stupid enough to be a martyr, I am quite simply living the way that makes me the happiest and allows me to do the things I feel are important. None of us want to live in pain, physical or mental, but when every move you make, even when sitting down causes you pain, there is no point just sitting there. When pain is in everything you do, even lying down in bed, then you gain nothing by lying there, so why not get up and get on with what little you can do. I also believe totally in what I said yesterday, use it or lose it, wasted muscles slowly die, if you don’t keep them working as much as you can, well the result ill or healthy will be the same, a muscle the doesn’t work at all, so use it as long as you can until you can’t. There were two things that happened to me following my diagnosis that totally set me on the course that I am on now, the first was in the first few days. I like everyone else, even those like me who knew inside for a very long time that something was very long, still when we hear the words go into a state of shock. I remember being at the hospital with Adam to get the diagnosis, how we got home was a blur, as where the next few hours, I sat on the settee crying and talking rubbish, I know that much. Inside I was a bundle of knots, that I had no idea how to undo, but I knew I had a simple choice, the same choice I had to face when my son died. Get up and go on with life, or sit there until I died too. I could have sat there falling to bits and become a vegetable overnight and for the rest of my life. Getting on with life wasn’t in any way ignoring what was happening, it was simply pushing forwards in life as we all do when healthy, I could see no reason why that should change until I was incapable of doing so, I still don’t see myself as incapable of doing so, so I still go on.

The second was when the doctors gave me a second chance, when they gave me the chemotherapy drug Mitoxantrone, a drug they no longer use at all as they have found that there is a small chance of developing acute leukaemia whilst using the drug, meaning no one gets it any longer. Even with that risk, I would still have taken it as at the speed my PRMS was moving then, well I would have been that dreaded vegetable a long time ago and by now probably dead. During the three years of treatment, my health changed dramatically, I went from someone who was on the verge of losing their job, to someone who continued to work for another 8 years and still has a brain that although annoying and refuses to work so that others hear and see it, is sharper now on the inside, then it was before the treatment. That second chance meant the world to me and still does, I refuse to let all the good done or the life I was given to vanish, just because I am not pushing myself to hold onto every single muscle, memory, or ability for as long as I can.

I know that I quite often seem to expect too much of myself, but if I actually manage it, was I asking too much or was I asking what I was actually capable of and just had to prove it to myself again and often again. If I didn’t scold myself for getting things wrong, or being unable to do something without problems in achieving it, then just like any person who gets away with things, I would keep not performing to my standards and would eventually just lower them sooner than I truly needed to. I adjust my expectations constantly, in years gone by I only every adjusted them upwards, right through to my diagnosis I pushed above everything I had I ever managed in the past the goals always getting tougher and tougher. Now, now I am honest enough to admit that I can’t push the goals higher, but I only lower them when I have exhausted ever single possibility, then I edge then down, but those downward motions are tiny and often enough to allow me to continue until the next adjustment is needed.

In the past year, I have gone from being able to run my own life, to having to ask Adam for his help. He had long ago taken on the physical aspect of running our home, I can’t cook or clean, or even keep things tidy any longer, physically my body has reduced to just minimal activity, but when your brain defies you, it’s hard to ask for the help we need. Not only does he tell me when to shower, when to take my tablets, but now he opens all my mail as well, as I can’t even manage to read a letter without getting distressed by it, simply because I can’t make the sense of it I expect. Slowly I am handing over not just my physical world but also the mental one and those actions are a million times harder to hand over, than any physical act. Am I being hard on myself, or am I just coping the only way I know how and in my humble opinion, coping far better than I ever expected to when it comes to returning to childhood, as that is how it feels when you can’t even open a letter.

All of us find our own way through how to live when our bodies have been taken over by a symbiotic relationship that we don’t welcome. I would no more tell someone directly how to live with their condition than I expect anyone else out there, including my doctors to tell me how to live with mine, because I am not them and I don’t know exactly how they think or what they feel. There is unfortunately nothing more personal than illness, even when you live it out publically as I have chosen to do. I write because I know without doubt that what I say might just help some of those who read, I don’t expect anyone to follow my every word and live their lives as I do, I just hope that some might find something that helps. We all make choices based on our experiences, our knowledge and when it come to our health, what our bodies are telling us, all we can do is try and make the right choices for us. So am I hard on myself, well by my standards, I am incredibly soft on myself, years ago I wouldn’t have allowed myself to get away with any of the things that I do these days. Years ago I would have forced myself to clean and cook, even if I had landed up doing so on my knees because I couldn’t stand any longer, I know this because I have often been cleaning and cooking with tears rolling down my face due to total exhaustion, but not stopping because the work had to be done. These days my body won’t let me do anything so stupid, these days I listen to it because I don’t have a choice, the only choice I do have is whether I give up totally or not.

Read my blog from 2 years ago today – 7/04/13 – Switching through needs >

I had to reread yesterday post following the two comment I had from Cathryn and Bordrich as I was surprised by their words. I am really struggling at the moment, but I have no intentions of going anywhere! Everything at the minute is tough, be it walking or writing or even lying down, as I said yesterday I am either in an unfulfilling coma or wishing I could go there. What the last few days has shown me is…….