In this piece, Paul talks about the way the system wastes your valuable time. Too often people think that people experiencing homelessness are not creating because they are too busy surviving but there a massive desire amongst many people with experience of homelessness to be creative and we as a a group and as individuals, have a lot to say through our creative work. 

 Transcription

As most listeners know by now, I suffer with a disease known as chronic fatigue syndrome CFS, or more commonly known as MECFS from the myalgic encephalomyelitis. I can’t even say it and I’ve been saying it for 20 years, and this means that my days vary every day.

And obviously, with the current program thinking about health and homelessness, I think the one thing that a lot of people never factor in is the very nature of having to choose.

So this morning I wake up, I’m in bed. There is no table here, there’s no workable kitchen here. So the first thing I have to decide, having checked, I can actually get out of bed because there are some mornings where it’s just not possible because my symptoms of my disease have what we call relapsed and crashed. And therefore, I can’t move. But if I can move, my first decision of the day is, do I get up and out to eat or do I start to deal with emails and all the processes that you have to stop?

And it’s these little things that I think are lost in the big news stories and the welfare cheats stories and the homelessness stories, is that actually the big decisions, the really hard decisions are the little ones, the small ones, the ‘don’t spend the morning writing to Westminster Council highlighting all their failings yet again for the 100000’ this time? Or do I do something productive and focused on a project that I’m working with a friend called Light Source and help them produce that for the British Library later this year?

Can’t do both. I can’t do both. So I have to decide, Well, am I going to get kicked out at February, which is the current plan, if I do nothing and the likelihood through bitter experience is that’s exactly what will happen or do I focus all my attention on making something that makes me a human being?

And I do wonder, dear listener, what you would choose and I suspect and with huge disappointment, but I suspect you will probably play the safe card, you would probably go, I’m going to chase for my benefits because how am I going to survive without my welfare coming in? I’m going to chase the local authority ad nauseam because how am I going to do…to remain inside?

And those decisions become more important, which means you’re sacrificing your life for bureaucrats. And there is sometimes you’ve just got to have the fight. I mean, I’ve been without welfare now for over a year, and I’ve got to now get a judge to allow me to appeal because you only get like three months to appeal.

For some reason, they can do things to you ten years after the event, but the other way around you get three months and you lose everything. But that’s days and days and days of work. That’s a compilation of correspondence going back over a year and a bit and having to cut and paste all those. And it just it takes hours and hours and hours and hours and hours time and…

You will find, I think when you turn about 40 or 45 that you’ll start losing friends at a rapid rate way more than you would have done earlier in your life, and sometimes obviously you have older friends. So if you’re in your 20s, they were in their 40s. And then by the time you hit the 40s, some of these people in their 60s and 70s and time takes on a wholly different meaning than time when your kids used to go on forever.

As you get older, it gets less and less, and you know, you you understand you are watching a ticking clock. So those decisions and names, they’re not they’re not minor things, so why are we not putting these things front and centre? Why are we not highlighting that every time I’ve got to waste time doing some bureaucratic nonsense I’m not creating or doing something great for myself and society at large, which is really where all our focus is, should be.

We should be living our best lives, as the adage goes in the 21st century. And as part of that, ensuring that those around us are able to live their best lives instead of being stuck with wasting bureaucratic nonsense, all it does is weakens the soul and wastes all you time.

Links

• What is ME/CFS? 
• Time Cost Benefit Analysis – I’ve been struggling with this fight for decades 
• My page on the Mepedia (Wikipedia for ME/CFS sufferers)
  

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