Especially to the author on the other side of the table!
Being the unusual brand of wonky that I am I was unable to switch my brain off during my recent period of down time. Aside from over thinking life, love, family, history, and running away, I decided to start a new business. A business which I can run from my bed, or a hospital waiting room, bed, or whatever! I decided to turn my creative musings into physical products. Mostly gift based, but all functional, all practical, and most importantly, all personalised!
So it began. A friend gave me the first tool that I would need on my journey. Mr. Shoe’s ordered the next tool that we needed, and came on board as a partnership, and I ordered some crafty goodies to play and practice with.Three days later and there we were. A bedroom full of our new business. Nowhere to move, but a business none the less. I created, hubby crafted, we boasted, self deprecated, and basically repeated the last three steps again and again. The manufacture side of things came on very quickly and within days we were producing saleable, unique goodies for people. Wow.
Then things got a little crazy. Supportive friends all ordered from us at once, and we were a little swamped. Things were crazy. And then flat… It all dropped off, and there we were, thumb twiddling. We realised that we weren’t using the best of equipment, and that maybe if we could output at a faster rate, a wider range, that we would start taking orders again. So we improved our methods, expanded our range, and so it began again. A rush of orders, a panic and a struggle, and then, flat! Off it dropped again. What a head scratcher. And this is how it has continued to go. Each busy run getting slightly busier than the last.
I found myself rapidly wiped out with each busy run. I’ve been struggling with my POTS, and other EDS related conditions this year. I pass out anywhere from 3 – 12+ times per day. My average is 6 – 8 times per day. The more tired I am, the more I pass out. But I’m determined to grow this new baby, and to make our new business work. I really am. But I know for sure that I am harming myself in the process. I am making my health worse by kicking back against the symptoms, by trying to be all things to all people. But I would also be worse off if I didn’t. Thanks to the austerity drive in UK politics, it is a very unfriendly time to be disabled, or out of work. My children would suffer too. They would suffer for not seeing adults who try, against all odds, to live a good life.
It was on the way home from Wales, listening to the Nottingham hustings between JC and Smith that I began thinking more about the Austeer Tory party that we’ve have endured over the past 6 years or so. And I specifically began to think of IDS and his shake up of the disability support system. Renaming and reshaping (at a great, and unausteer cost!) an allowance designed to help people with disabilities live and cope with every day additional expenses called Disability Living Allowance. It has now become Personal Independence Payment. The aim has essentially been to cut off vital help for as many people as possible to save some money by ceasing “hooky claims.” My Eighteen year old son has fallen foul to this problem, he has multiple things to contend with, and with neither of us being well enough to truly fight for what he needs, he has lost the little bit of support that he was receiving. He is less independent now that he ever was before. So much for personal independence there. I don’t doubt that IDS truly believed that his ideas would help people, as well as the system. On paper, support to help you be more independent, rather than pigeon holing you as disabled can only be a good thing, right? The problem is, IDS does not appear to have any issues which mean that he would know how it feels to be backed into a corner by a failing body. He also doesn’t have a clue how it feels to have the rug pulled from under you. Losing your truly independent self, and being limited by disability. And he certainly doesn’t realise how much independence the pressure of fighting against your obstacles, to find a way to work against all odds takes away from a person.
I am more dependent on another person now than I have ever been. I am however also more determined than ever to have a productive, contributory value in life. I don’t think that I could actually handle the disabiling impact that being a social pariah in the eyes of tabloid Britain would have on my mental health and well being. I’m now on the look out for a kindly mentor to help me get my business in order. To teach me how to take this from a little hobby shop to a livable income. I can do this. I know I can . . .