I found myself staring at the globe on the top of my blog, I haven’t looked at it for several weeks, I seem to go through phases of being transfixed by it, then ignoring it. When I was checking the spread of the little dots, I suddenly had this mad idea about getting a dot in every country on the planet, something I bet will never happen as if there is one thing I have learned in the last few years, there is no reason as to why someone suddenly decides to click on my link, where ever they find it and read a little or a lot. Trying to get a dot in every country, would be totally impossible as I wouldn’t know where to start to produce links that would appeal to different people of different cultures, but I also know that it takes challenges to keep us alive, so it may not be me most pressing one, but it is without doubt be the most difficult and biggest one I have even thought about in my entire life. In fact when I think about it, I never really have set myself an out right challenge until the last few years, before that it was more a case for me of thinking about it and just doing it, which for someone who has achieved some rather big things in my life, sounds big headed. To me it’s not, I have never believed there wasn’t anything that I couldn’t do, if I wanted, I just had to want to want to do it, which is probably why school was such a huge flop.
Becoming so ill that a blind man could see it, changed things, I found myself for the first time having to challenge myself over and over again almost daily, just to do what needed to be done. I would actually go as far as to say that challenging yourself is the most important part of surviving, if you just sit back and let your health push you around, you land up doing nothing. It might be OK to sit or lie in bed when you have something serious like pneumonia, but do that for chronic illness and you have lost before you have even started. Back in 2012 I wrote a post called “Seven Steps”, I hadn’t even thought about it for ages, until last month when I read a message left for me in the guest book in my blog profile pages. I had actually totally forgotten that it even existed when I found an email saying there was a new enter, I truly don’t remember ever getting an email notification before, but there were sever messages I had never seen, including one from someone who had turned their life around by following what I had written in that post. I felt truly humbled that someone had taken my advice and found that for them, it worked as well as it did for me. Being ill was the first time in my life where I needed to have set goal, set things to achieve and I also learned not to beat myself up if I didn’t manage them, just to step them down a little and try again, any thoughts of anything that looked like climbing Everest just had to go.
What I didn’t know when I wrote that post was that in just two short years, I wouldn’t be able to do half of what I did back then, but that is the real challenge about illness, adapting, not once but constantly. I never thought back when they gave me my diagnosis that my health would ever be as it is. It was a bit like when my son was born with Spina Bifida, I thought that meant callipers, not he would be dead 12 days later. When I heard the words MS, I thought wheelchair and pain, not housebound and unable to do a fraction of what I used to do in an hour, in a whole day, or unable to do it at all. Looking back can be a dangerous thing to do, unless you can do it wearing an analytical hat, wearing that hat I can seem my progression downwards, even in the relatively short time I have been writing, that the downwards progression is huge. Despite the fact I have been screaming for years for someone to tell me what my true prognosis is, I now can’t help but believe that not knowing in advance, at least in it’s minute detail. Not knowing has actually made that adjusting easier, as I have adjusted at the rate my health dictated rather than trying to adjust in advance, something that wouldn’t have worked at all. The bonus of knowing would have undoubtedly been when it came to financial planning, that would have changed a huge amount just how things worked out, as I said, looking back isn’t always a good thing.
I know that it is the coming years that will be the worst of it, but in a strange way I am ready for it as I have spent so much time learning what it takes to adjust not just to the physical, but to the physiological aspects. There isn’t a nice little plan I can write up for it, but it is all about working onwards from my original 7 steps, when I set them out for myself, I didn’t realise just how important they were. Step 8 if you like, is to adjust constantly, daily if needed and to be able to look back on each day knowing you have done the best you can and if you haven’t, to give yourself a really hard kick. The day you start to feel sorry for yourself, or let your personal standards slip, is the day that you have given in and that I believe, is the beginning of the end for anyone. Everything about living with chronic illness is personal, every single one of us have standards that we live by and just because our body is giving up, doesn’t mean we have to. For me, my home is my biggest stumbling block, I can’t keep it the way I used to and it doesn’t matter what Adam does, it will never be the way it was again. I have adjusted to that, but there are limits, to me for now the limit is not having it filled with medical equipment and for it not to be disturbed or damaged in any way by my health. One simple example is the fact my home in every room has crystal ornaments, glasses, decanters and so on, on every surface, not possibly the best thing for a person who isn’t so steady on their feet. My standards say that not one piece will ever be moved just because it might possibly be a danger to me, I am more than happy to take that risk. To some that is madness, especially to the OT’s who have been here, but if I let that happen, if I allow my home to be reduced or damaged, it is happening to me, it is totally personal. If I were to fall on it and break it, I would carry the scare, just as my home would. I know some won’t understand that on first reading, but with thought, we can all come up with something that feels so important that without it, life would never be the same again, for me, that is every single fibre of my home. Letting anything happen to it, is like letting the medical profession to limit my life more than it needs to be.
How we adjust, is as personal as every hair on our heads, but with one huge difference, we can change our hair, we can’t change our health. With the right goals, the right challenges and the honest self praise, ticking off or realisation and carrying our of required changes, we can all have a life that we are still proud of and there is nothing like righteous self pride in keeping us going and sane.
Please read my blog from 2 years ago today – 9/12/12 – What is Surviving
I wish I could start a post without the first thought being that my synopsis of how I feel is yet again starting with tired, I am sure you all get really fed up hearing it as well. It is though just the way things are I’m tired and my legs hurt and I simply want to go back to my bed……..