A missing value

Every day has the same number of hours and every day I do exactly the same things, so how come, that every day, I reach this point at a totally different time? It’s a poor, but a simple example, of how even the simplest things are affected by my health. It can vary by as much as an hour and a half, just because my brain isn’t as clear, my body hurts that bit more and a mixture of a million different things, happening inside me. No two days are the same, there is no consistency and no predictability to my life. I could set out routines, governed to the minute based on today or yesterday, but I will never be able to keep to it, I’ve tried it and I know I can no longer do it. Yet, governments want us to work. Show me the business who would be happy to put up with this one simple fact, not to mention a million others that I could document as to why the chronically ill, can’t compete with those who are healthy, we are 100% unreliable in our productivity.

Sometimes, I dream of being able to go back to work. Of having a job, clearly one that I can do from home, just as my last one ended up. I have this vision of actually making a living again. It’s a mistake that the able-bodied make, in thinking that we don’t want to earn a living. I admit freely, that I too thought, that some stopped working long before they needed to, that they grabbed the first opportunity to take medical retirement that appeared. I was equally sure, that some continued to the last possible second and others, like I was, were pushed. The one thing I never thought, was that any of them actually longed to be able to work again. I’m not sure if I ever even thought about it, about the huge range of feelings that anyone had to contend with, once they weren’t physically unable to earn a living any longer. I guess that in many ways I just saw their lives continuing, like a cavalcade of weekends on into the distance, why, well because like the vast majority of people, I didn’t really think about it at all.

Just because I am disabled, and can’t do anything for myself, doesn’t mean that I don’t still long to work. Having a job has far more to it, than just earning a wage. Yes, the money would be nice, extremely nice, but it has little to do with that yearning. It isn’t even about what many talk about, the social aspect of working, no, I discovered that in the last three years I worked, that that didn’t matter. After 10 years of working in an office/call center environment, I worked from home for three years. I was connected to a bank of three computers in the office and through them, to every system in the building and of course my staff. I worked every day, just as I once did from within that same building. Yes, I got the odd email, when staff wanted to book holidays or wanted to question their commission, or of course when things had gone wrong, or when ad-hoc work was required, but I had little to no social interaction. I still loved every second of it. I was doing something that I was valued for and being valued is so important to our well-being. Before anyone says it, yes, I know that I am valued now, but it is a very different sort of valued.

I may have over 200,000 followers on twitter and another 500 plus here, but you all value me in an emotional way. When I worked, I was valued for what I could do, because of my mental skills, my ability to add value to a business and it’s success. I was doing something that was important to them and to me. That is a feeling of value, that is totally different from my life now. I admit, I probably would be doing quite as well as I am, if, it wasn’t for every single one of you, but there is still something missing from my life. So yes, I dream of having a job, despite the fact that there isn’t the slightest chance of my ever being able to work ever again. In some ways, that is probably the essence of all our deepest held dream, because at the core, is something we know perfectly well, we will never have again. I wouldn’t survive employment for even a single week, it would destroy me so fast, that within a couple of days I would be failing them, making mistakes so huge that they would sack me. Not to mention the over activity that would take place with my health. Dreams and reality seldom match each other, that’s a fact.

To every single one of those people out there, who believe that the medically unfit to work just sit back and have enjoy the fact they can’t work, well your wrong. I cried for days after I was told that I was being made redundant. I knew it was coming, as I knew better than most that the company was in trouble, thanks to the act of the then dismissed CEO, but that didn’t make it any less painful. I had survived the last three rounds and with a call center stripped back to just fifteen, and every department in the company about to take huge hits, it was bound to happen. I tried for two years to find another position, but no one wants a housebound Operations Manager they don’t know. It doesn’t matter how you land up unable to work, it hurts because we all have so many skills and so much knowledge, that is suddenly as redundant as we are, being disabled, makes it just that bit harder. Anyone who has lost a job must understand that.

Logic and dreams, they never match each other. Add in the element that your health is working on destroying your body and the loss of that ability hurts, as much as the loss of any ability. When will the world wake up to the fact, that most of us, don’t want to be unemployed? Unemployment is just another sign of how far our health has gone and that because of it, we are no longer valued.

 

Please read my blog from 2 years ago today – 09/04/2014 – Isolation

It has been a while now since I found myself think about the past, I used to go over and over almost everything I remembered, almost as thought it was all haunting me, holding me in some sort of hell that I wasn’t allowed to leave behind. Memories from my childhood as young as just walking onwards, from the first memory of lying in my cot looking up at the skylight at a cold black sky, I have no memory of stars or weather, just that black oblong above where I slept surrounded by bars. It’s not like I remember every day from then on, but I remember strangely only the thing that caused me pain, for sticking my finger into the wheel on the back of my Mothers sewing machine and losing a nail, though to getting my hand caught in the kitchen swing door, no damage that time just pain. I suppose things like that stay with us…..

Independent Living

Yesterday I was invited to help out Alex Flynn doing some PR work, something I have never done before and have no knowledge of doing, especially as the work would have meant that I would have been dealing with the American media, I’m not a great media person if you know what I mean. I am the type of person, that if Usain Bolt sat down beside me I wouldn’t recognise him, which has been totally proved as it happened, not Usain Bolt but with some other rather famous people in Glasgow. I know nothing about celebs or media companies, I haven’t read a magazine since 2003, and that was because I was in hospital for 2 weeks, a British news paper hasn’t been in my hands since 1997 and I haven’t got a clue about what is good or bad PR these days. I just simply not the person to do this job at all, understandably I turned the offer down as I don’t want to damage the wonderful work Alex is doing. For those who haven’t heard of him, Alex has early onset Parkinson, he has been fund raising for Parkinson research for a long time, his latest challenge is to run across America, ’10 million meters’. The run is due to start in September and the PR person set up to do the work, have pulled out last minute, he is even willing it’s not huge money but it could be an added earning for some one who already does this type of work freelance. If you know anyone or even would be interested in helping yourself, let me have your details and I would be happy to pass them on.

While I was thinking about all of the above I also had to take into account the money aspect. One of the really difficult things about working in the UK once you are signed off as permanently disabled is you can’t work at all, well you can up to 16hrs a week voluntary work but any payment at all can mean they take your benefits away and you have to start from the beginning again. It means that it really isn’t worth your while taking any temp work not only would you loose your benefits for that period, but it would mean that you would also loose a further £15 a week for the next 3 months, then loads and loads of forms to fill in just making it all more hassle than it could possibly be worth. On one hand they don’t want you to be on benefits but on the other they put in so many hurdles and barriers it becomes impossible to do anything other than stay where you are collecting the monthly checks.

Feeling useful and achieving things is so important to anyone who has a chronic illness and or is housebound. I have many times said the biggest enemy I have after health is that feeling of self worth. The desire and goals, achievement and success don’t go away when you are no longer able to get past your front door and to be able to be part of the working world even for a short time is worth far more than what the NHS can do with just tablets. I really think there should be more flexibility in the system, allowing you to work if the opportunity arises.

Years ago I was unemployed as I tried to establish a career as a DJ, the government allowed me to work, but I had to declare all I earned and supply receipts for what I was spending on equipment, taxis and so on. They assessed what I had earned and the amount I got in benefits changed weekly depending on what came in. They system once ill is totally different, you are either ill or not, there is no support to allow you to try and set up a self employed position, it is just nuts. I am sure there are many opportunities especially these days, which would allow a degree of self respect to be obtained without the complete removal of benefits until it is clear that earnings would be able to replace totally what was previously claimed in benefits.

I really do believe that if there was a system available more people would take hold of that possibility and more would then be able to become independent from the state or at least to reduced the level of benefits, while still earning a little above that rate, allowing them more self respect and a better standard of living. This is something the government wants and something others out there like me would grasp with both hands and attempt to run with it even when their bodies can’t run any more.