My Working Life

I noticed that Sue had done a post on this in her Diary of a Benefit Scrounger blog.  I thought I would share my experiences with you all here.... a bit different maybe, but that's the thing about disability.  As I am so fond of saying, we are all only a step away from it. 

I was always healthy.  I was always strong.  I was something of a tomboy, stocky, broad shouldered, capable.  It never mattered what came my way, I coped.  I even coped to help other people, especially family.  I can't say I ever did jobs that I particularly loved, at least not when I was younger, but I worked hard, and I always put a lot into whatever I did.

I married, was widowed (had to nurse my young husband for several years.... but hey, I was strong, I coped) and remarried.  Had a large family.  Never had any money.  But I turned bringing up my children into a full time job.  I coped.  I could make a bag of flour into an endless supply of cakes, pastry, even bread.  I learned to quilt (bought oddments in jumble sales and made quilts to keep the kids warm.)  I worked when I could (as a music teacher) from home, and I made a little extra that way. 

My husband became ill and had to give up work following a car crash.  But I told him not to worry about giving up his job - we would cope.  I would do whatever it took just to help him get better.  And I did.  I sold home-made sandwiches.  I sewed for people.  I knitted for people.  We had little money, no car, but we made sure the children had happy lives, plenty of walks and picnics, all free or extremely cheap.

Then one of my children became ill.  So ill that she never went back to school again.  But I coped.  I home educated her as far as I could, helped her even get a degree when she started to recover years later.  (I don't have a degree myself, so that was no mean feat.)

Slowly, I noticed I wasn't feeling quite right.  I call it the Salami Syndrome.  Slice by tiny slice, so that you don't really notice until things are really bad.  It went on for years.  I fought it.  I had to.  People depended on me.  I never went to the doctors for myself, onlly for other family members.  But I kept going.

Until..... there comes a point when you cannot ignore it any longer.  Things were badly wrong.  It took years to get a diagnosis and even now I'm not convinced they've got it completely right.  Because I had a rare disease there is little research into it, and some doctors dismiss it with a 'Well I've never heard of it' remark which puts hell in me.  If they haven't heard of it they should bloody well go and look it up, don't pretend that because they don't know about it that's it, it can't exist!

So.... nothing remarkable in my life.  Hard work.  Caring for others.  Seeing my own health go downhill.  From being strong and capable, I am suddenly the one who needs looking after.

But worse than that, I have become one of the Others.  The workshy.  (Actually I'm still self employed, but hey, who cares?  Workshy sounds better.)  One of those languishing on benefits (Actually I have never languished in my life.  People who know me say that I wouldn't know how to.) 

But I'll tell you something.  Something that people like those in power don't realise about people like me.  Our sickness toughens us up.  It tempers us in the fire.  We have nothing to lose.  After all this, do they really think I am just going to roll over and give in? 

No.  I won't give in to my health problems, and I won't give in to anything else either.  And certainly not to a bunch of gormless politicians and penpushers of all parties who believe that I am a problem that needs sweeping under the carpet.
For them I have only one thing I really want to say.  'F*** you.  And the horse you rode in on.'