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…..

Parallel situations

I am in a sort of not really bothered to do anything today, mind you many would say I don’t do anything any day. I guess on some levels that is right and even I know that. There is always a danger of that feeling settling in for anyone who has lost there job, but if there are other reason to compound your ability to find new employment, life becomes much much harder. Employment isn’t just about money, it is about your value as an individual, and having it taken away, takes your value away. Redundancy has effect millions, so millions know without me telling them what the whole process does to you. Being told you have a chronic illness isn’t that much different, ironically the company I worked for where a huge part of my support network that helped me through the adjustment process. It wasn’t until I was made redundant that I realised how similar the feeling were. Both situations make you think through your entire life and where you belong now in the pecking order that you have been used to and part of. Suddenly in both situations there is a void, a void so big that you can’t perceive ever being able to recover or being able to continue in life. All you can see ahead is black and painful, your life has been pulled away from under you.

So many people have asked me how do you move on knowing that you are slowly dieing, that your future is one of becoming more and more disabled and less and less able to function independently. Well if you have been made redundant you have gone through something very similar, just how similar those feelings are really surprised me. No one is ever prepared or expect either thing to happen to them, both happen to other people, not to you. Both have a slow build up, meetings that slowly nudge you into guessing what will happen soon, but you still walk around with that conviction that say not me, someone else but not me. You read between the lines of every letter they send you, of every leaflet or web page you find, part of your mind saying any minute now, soon this is going to happen to me. But there is still that blinkered confident idiot saying over and over again not me, I have a settled well established comfortable life, this won’t happen to me.

Then the day arrives, you are going to that meeting, appointment where your life is going to be either set free to continue as is, or everything will be destroyed for ever, no way of moving on, no possible continuation. They talk, you listen and you go cold inside. How could they be saying these things about me, to me? All your plans, your dreams, your future have all vanished in one 20 minute conversation. They have given you more leaflets, more things to read, things that you are totally incapable of comprehending at that moment in time. Both situations to this point will be familiar to any who have been through either, weeks of dread, followed by weeks of disbelief and mental adjustment. So how do you recover? How do you move on? What is your life going to be now? What can I do? Is there anyone who can help me? All totally and wonderfully healthy questions! This may not be totally helpful to someone at that start of adjusting, but I hope it might put your minds slightly at ease. If you are asking those questions, trying to find away through, constantly wanting to know more and to know what next, then you are adjusting well. I have said it in many different ways in #PSMyWords, but for the first time here. Never stop asking questions, always keep learning and setting goals, keep moving forward, keep searching for your answer, your way through and your plans for life. Don’t just settle for the way things are, you can always make things better and you can always change things. It’s a boring answer, because it means you have to do some work, in fact lots of work, because you have to keep achieving, keep active in your body if you can, if not, then just in your mind.

I haven’t been able to find another job, but let’s face it a woman in her 50’s, housebound with a progressive illness isn’t exactly the first person most companies would want to employ, but I have manage to make my life have a value, an importance and a place in the pecking order. I am a survivor and every single person out there can be to, as long as you never ever give up until you have each tiny goal complete. Then set some new ones.