The path to the future

Today is a tired day, a day where sleep is had been in my mind from the second I woke up, which considering I went to bed an hour early isn’t good news. I am still slipping, all I want is the time to sleep and the time to just disappear. Today I have to have my shower, regardless of how I feel as tomorrow the MS Support Worker is going to be here. When the letter arrived a couple of weeks ago I thought I had nothing to say to them, it is almost as thought my MS sat up at that point and decided I would have plenty to talk about. I had already for a few weeks been having problems, but since that letter arrived, they have all been amplified and rushing at me so fast I just can’t keep up with them. I guess that is what they call sods law, if I had said nothing, not reacted like a lunatic and just put the letter to one side, would any of this happened, without the slightest doubt it would have, but I am like everyone else, I like to have something to blame things on.

I am having to make an extra effort today, to be sure that I am sat with my back as straight as I can, I have had pain in the top of my spine for the last couple of days and I know full well that it is because of the way I have been allowing myself to slouch recently. When all your muscles are so busy screaming and complaining about being used, it is incredibly easy to just give in and to sit in any position that allows just that bit of comfort. The same goes for lying down as well, you just want relief from the pain and how that is found is often just doesn’t really matter. I am usually good at trying to control my posture, be it sitting, lying or walking, I learned at an early age to walk with my head held high, my back straight and my stomach pulled in, another of those odd things like elocution lessons, that happen when you go to a private school. A school who to be perfectly honest didn’t seem to know what they were trying to produce, as it clearly wasn’t someone to go on to university and a career, but the production of snotty upper-class wives was rapidly going out of fashion. I suppose the 70’s were really the breakthrough years, the point when despite what you read and see on TV, that the well off were slowly truly accepting that their daughters had to be more than someone who had to make a good marriage, although that was still their first choice, but their daughters & society were expecting more. It is always the well healed who move the slowest when it comes to being part of the world, they have their own world and mostly don’t have any wish to have it changed. I am still really glad that I was educated in the mixed up world until I was 12, my last years of education being at the Grammar School, I learned much about people by having that mix of both.

We are all products of our upbringing and I know without a doubt that my up brining was totally responsible for the fact I couldn’t argue and still find it very hard to with doctors or anyone in a position of authority. I also know that it is also the reason that I found it hard to demand from anyone what I am entitled to, I am a true wimp when it comes to anything like that. I am the person you will see quietly asking and accepting without any true fight if I don’t get what I want, but I am also the person who will walk away angry and arguing inside over what I should have said or done. Trust me, that is one thing I do with great easy, I will argue and argue inside me, for not just a few hours but even for years, yes I did mean years, I still run through things from my childhood and working years, over the things I should have said and didn’t. I was brought up, I am sure by total accident, to be a person who will find stress inside when it isn’t happening on the outside, take that to the next step and you could say that I was brought up to spend my life being ill. I am sure that those people who rant and rave loudly over the smallest things will never suffer stress-related illness, as they let rip and get rid of it, where I breed it and nurture it until it has total hold of me.

I didn’t set out today to write any of this, it’s strange how things just start through one line and keep going by themselves, but now I have written it, well I have to agree with all of it. Those things we learn from home and school aren’t just the academic, in fact, it is the none academic that makes the biggest impact on our lives and health, but none of it is structured toward either. I tried with my daughter to do almost the opposite, to let her have tantrums and to scream and shout about how she felt about anything, but only at home, I still added in rules but I tried to ensure she had that outlet. So far she seems to be a well-rounded adult, in good health other than from problems with her knees, but that’s her fault for growing so tall, six foot is too tall, especially as she now looks down on me. I was never allowed that kind of outlet for anything, I wasn’t permitted an opinion if it didn’t match my families, I was brought up to hold it all inside and here is the result. Someone who’s health has been destroyed partly due to the stress I still haven’t managed to put where it belongs, anywhere but inside.

Educated to be a person who looks right, who had to have good posture, clear speech and to have an enquiring mind, but to be silent, composed and compliant, regardless what is going on, sounds for it’s time to be about right. What I see of the kids growing up now, is so different, that I can’t help but wonder if illnesses like mine will decline in the future, or if the modern day stresses and speed of life will cause just as much harm. I suppose that the truth is that the world keeps changing, that there isn’t a perfect education or upbringing, I just fear though that we are all racing on into a future without planning any of it to ensure life is good, not spent housebound by illnesses that they can’t even find the cause for. The longer we live, the longer we have to become ill, I almost guarantee that although I won’t be here to see it, that when the majority are reaching the age of 90, there will be new illnesses that we don’t see now, just because people don’t normally reach the age they can appear. MS wasn’t know 100 years ago, the average lifespan was 47 to 50 then and the average age of MS onset is 34, I am sure it was lost in the illnesses of old age, it was there just not seen in big enough numbers to be an issue. Maybe it is time that we started planning the lives of our children for them, from the day they are born, to just give them the best chance of life lived to the full, not destroyed by the unknown, but aware that it is always out there. We set them up on their academic paths, isn’t it time we also set them up on their health path as well both physical and psychological as well.


Please read my blog from 2 years ago today – 02/07/12 – Partnering illness 

I have been reading back through some of my posts and I noted that I have spoken a lot about my life now that I am housebound and the time before I was diagnosed, yet little about the time in the middle. There is, although, I may not have written about it a whole 5yrs in the middle missing. I suppose that much……