It amazes me just how many people out there, are still living in the cosy world of, what should be, actually is. Almost daily, I still hear from someone who thinks that being disabled, is a comfy life, where we are well taken care of, and that our lives are as simple as not being disabled is. I think the one that I hear the most, fits around what the word “housebound” really means. Oddly, the majority of people seem to think that all it is is not getting out as much as they would like. I have even had people who have actually said things like “I’m just like you and I totally understand, I haven’t been out since last week”, or the other classic, “I hate not being able to get out and about by myself.” Sometimes, it’s hard to not get angry with them because, there are no grades of housebound, you either are or your not, just as there are no degrees of having a chronic illness or being disabled. Worst though are the ones who aren’t ill at all, the people who as I said, live in a comfy world where everything and everyone is totally taken care of. To some extent, I can see where their thinking comes from as I actually remember thinking just the same thing years ago. I was like everyone else in the UK, I was wearing blinkers, put there by the “Welfare State”.
Back in the 80’s and 90’s there was very much an image put out there, that no one ever suffered any more. That no one even struggled, as they were scooped up by the state and cradled, against the worst their health could do. I think it was a picture that actually grew from it’s very creation when the NHS, and the care systems, propaganda involved showing happy people smiling in wheelchairs, or well protected within a caring society. I thought, that the second you became so ill and you couldn’t work, that the state swung into action, caring for and taking care of, absolutely everything you could possibly need. We had all swallowed the propaganda, hook, line and sinker. It was an image that held fast right on into this century and if you believe what is on TV, only started to crumble when austerity started to bite. Wrong, it crumbled far sooner than that, I, in fact, wonder, if it ever truly existed. From my own life, I can site issue, after issue, that proves that Welfare State, never worked at all right back into the 70’s, and the NHS had holes, as big as a battleship throughout. I can site my two sons, Jeffery and Christopher as just two painful and perfect examples. No one swept in to make their lives the way they should have been, and no one swept into repair the pain and damage that their lack of care actually caused. If you need further proof that the so-called “Welfare State” doesn’t work, well, there’s me.
It just goes to show the power that propaganda actually has. Right through to today, there are people, who think, that the state would spend money on something, like getting me, outside of my house, for a day. I’ve been here 8 years, I’ve seen doctors, nurses, specialist and social workers, not once has anyone, batted an eyelid over the fact, that I can’t get out of my home. Not one has even been surprised at how long it is that I have been here, or that no one comes to see me any longer because, this is the normal pattern, this is how it really works. There is and never has been the money to do all the things that people seem to think, should happen without question. Those current day pictures you see of happy people in wheelchairs, or being cared for in the way we believe people should be, have nothing to do with the “State” and everything to do with charity, or insurance payouts. If you want carers, if you need helpers, you have to pay for them. Yes, there is, if you are very lucky, a fund that will help, but the boxes to tick, the hoops to jump through, are huge but almost impossible to hit. The way that I see it is that I am happy, I can still cope with the life that I have, I would rather those who can’t cope, get the care that they need to live a better life. The day for me will come when I’m not coping, then I’ll try to claim my slice of the pie, but for now, I’m sweet enough as I am.
In a bubble gum world, no I wouldn’t be stuck in my flat, I’d either be living elsewhere, or there would be a way out of here. In a bubble gum world, I would have an electric wheelchair that fits into the restraints of my home and takes away the pain caused by the manual one. In the ultimate bubble gum world, I wouldn’t be ill at all. This isn’t a bubble gum world, so what I am going to do about it? I could make myself miserable, spend my days being angry at the world and life, or I can get on with it with a smile on my face. I choose the later. Oddly, I am allowed a choice, despite the fact that I didn’t have a say in any of the rest of it. It is the same for all of us, life boxes us in, it doesn’t matter what’s inside those boxes, be it our health, our job or our fears, we all have boxes piled up around us that stop us doing what we want. Some of those boxes can be removed, others can’t, that’s just the way life is. I could make a list as long as my arm of things that would make my life better, but no matter what is on that list, at the top of it is one unmovable object, my health. As I have said over and over that the only way to live is to accept those immovable objects and live the rest of your life.
The Welfare State hasn’t got the answers for us that we expected. They can’t cure our conditions, house us or care for us in the way we expected. In many ways, I don’t know why we ever expected it to be any different. I’ve learned that the hard way, but I honestly think that it’s time our country woke up, took their blinkers off and saw all the people who have become lost in a system that doesn’t even exist. There are millions of people out there who need our help, they are not being cared for, no one is helping them, they aren’t cared for and loved as I am by my husband, Adam. They are alone facing every problem of chronic illness brings, but without the support, of people who love them. It is not just the elderly who are isolated and alone. Far too many are standing back, thinking it’s not our problem, well it is, it is a problem for every single one of us who has a heart. It is a problem for all of you, for one in every twenty-five, so yes, the odds are high, that one day, you too will find yourselves, living just like me, like Adam, or them, alone and in pain in more ways than one.
Please read my blog from 2 years ago today – 04/12/2013 – Is it me or you?
Yesterday post set me off thinking during the afternoon, one small part of it kept going round and round in my head, how long is it since or have I ever had a body that was well? It’s actually probably is an……