It’s day to day

I’m feeling nauseous again today, it wasn’t helped when I tried out the new way of making my porridge in a hope to ensuring that it had absorbed all the water it could before eating it. Unfortunately, the result was a soggy mush that I know is how many see porridge, but to me was totally unpalatable and reminded me of the stuff they used to serve in hospital. I struggled through two-thirds, every mouthful getting harder and harder to deal with before I just gave up as I was feeling so sick, clearly this isn’t going to work, I am going to settle with making sure I drink at least half a glass of coke straight after I have finished, that way they will hopefully mix and soak inside me. Trial and error has been a constant companion for my entire life, especially when I didn’t know what was wrong with me, I have so many failed great ideas behind me that I no longer get disheartened when something fails, I just put it to one side and forget about it, then try something else. I know that is something that many find really hard and get terribly disheartened when things keep failing, in fact, I would say with confidence, that for some that their failures to make life more bearable is almost as bad as their illness when it comes to making them depressed by the whole thing. The last thing I would say to anyone is to stay positive or to keep going as it will work out in the end, I wouldn’t say it to anyone as I really hate it when people say it to me. Personally, I think there is far more point in congratulating yourself for all the small or even tiny things that work for you daily. Other people won’t tell you have done well today in walking to the kitchen and back 8 times, so make sure you do, as only we know the effort those things take. That is about as positive as I get daily, but when you keep patting yourself on the back, well the day takes on a different feel and when one thing goes wrong, it is lost in the mix of all the things that have gone right.

I am usually a glass half-full type of person, but that doesn’t mean that things don’t get me down, far from it, no matter how full the glass, I still find to this day that things that should be long forgotten can still appear and take over my mind for days, worst at night. I can see with ease how if I let it, I could become low with ease, not just because we can’t change the past, but when you can’t even get out of the house, you can’t prove that you would handle things differently now, or have the slightest chance of bumping into someone you wish you could now apologise to. There is a strange thing about becoming housebound that causes you to look back over your life, again and again, I expect it is something similar to old age, once you no longer work or have the social interactions you once had, the past fills in those gaps. Not having new events or people to move you forward, means there is only one direction your mind can go and that is backwards. That doesn’t mean my life now isn’t important or inspiring in its own way, it is impossible to find any fair comparison between the two, they are just too different to compare. Living with one foot in the past is impossible to avoid, it is when both feet are planted there that the real problems start, that’s why I have written again and again about setting goals and the importance of achievements, you have to keep moving your life forward if you are going to beat the past into its place, which is essential.

I often think the biggest mistake that people whether ill or those who have lost their jobs or have retired make, is to fall into the trap of not living their lives in a normal fashion. Anyone can stop, spend all day in bed, stay up all night and avoid the fact that life is still going on, that is probably the most important thing to have fixed in your head, life is still going on, it hasn’t ended. You have to create a new version of normality, a personal one that works not just for you, but those you live with and the outside world, you can’t forget it is out there, no matter how many actually try to. It is one of the challenges we all face at some point, those of us with a chronic illness just face it sooner and if you think about it, that should actually make it easier as we are more aware of the technology available to help us. I think one of the things that too many do is to be too hard on themselves when they don’t adjust immediately, it takes time, you can’t go from the perfect life outdoors, to the perfect life indoors overnight, it takes time, lots of time. There will be many days of feeling like life is over, many of not feeling you will ever get used to what has happened, but we do, there is one thing that all humans have in common, we are adaptable. I know all this because I have been there, read the book, bought the tee-shirt and lived every second of it.

Seven years in and I am happy, that is a huge achievement in itself, but I haven’t sat back and said job done, that I believe would be a huge mistake, if I just said this is my life and it will tick by happily as it is, I know I would be opening a dangerous door to my future. Life has to keep changing and it has to be kept going, you have to have more things to do, more things to aim for and more things to achieve, all of those are things that would happen naturally if we were still part of the average life. We all would change jobs, have new projects to work on, maybe move home and have a new nest to build, these natural events have to be made to happen once life has been shifted indoors, the challenge is how, not just financially, but when you yourself isn’t physically able to do most of the work, how do you stay part of it and keep moving forward? You do it all in small chunks and with the help of others, you invent new ways of doing things, approach every small part of it with an open mind that has to come up with solutions to every tiny bit of it and you mix it in with your everyday life. Things will fail, but other parts of your day work, you set out so there isn’t a possibility of the negatives outweighing the positives, you plan it to work with your level of energy and your own capabilities and you don’t give up.

It doesn’t matter if it is just the best way of making porridge so it is edible and protects you intestines, or working out how to clean the living room curtains when you can’t afford to send them to be dry cleaned, they are all challenges and all once achieved something to pat your own back over, just as that extra trip to the kitchen is. They may not change the course of history, but they will keep you going and keep you happy.


Please read my blog from 2 years ago today – 2/10/12 – Scenarios 

I seem to be always finding excused in the last few days not to do anything, I’m not sure why but I was even having to push myself to write and that isn’t the normal feeling for me at all. The only thing I can think of is down to my left hand. As I have written about on several occasions I lost totally the use of my left arm and despite it returning it never came back fully. It has frequently had…….

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