Spoonie or Loony: Not Much of a Choice, Is It?

There are a lot of "spoonie" /"spoony" tweets flying up and down my timeline on Twitter these days. A 'spoonie' is "someone who has a debilitating, painful, chronic condition but doesn't look sick" (see http://tagdef.com/spoonie). The origin, according to tagdef.com, of the term is the aptly-named Christine Miserandino's "The Spoon Theory". Which is, apparently, what I am. It lacks the visceral, humiliating punch of 'benefit scrounger,' and I am about to become one of those again too, after almost a year spent trying to understand why someone, somewhere decided I wasn't disabled (enough). We spoonies have a difficult choice to make every day: pain relief (and feeling like a junkie failure) and sanity or none and feeling on edge and slightly insane, just trying to make it to the end of the day without weeping in public or killing someone. Today I've gone for pain relief, and I feel slightly guilty, but my shoulders aren't hunched above my ears and I can  stand to stand up.

Not Disabled Enough, But Not Able Enough Either

Wondering why, if it is against the 'rules' to consider where I work, or the sort of work I do, when determining whether I meet the eligibility criteria for the higher rate of Mobility Allowance, the fact that I am working, and, in the course of working, cover wards in hospitals and nursing homes, has been cited as proof that I am not disabled enough?

I feel as though I am being punished for refusing to fit the stereotype of the disabled benefit scrounger. Working seems to somehow go against me. I used my DLA money to lease a car so that I could get to work and go on my rounds every day at work. Apparently the DWP would be happier offering largesse to the tune of a princely (technically 'princessly'-- just look at the gender bias inherent in the English language!) 189 pounds a month (or whatever it is...the appeal has been going on so long I don't even remember what I was getting, exactly) if I was staying indoors and out of sight.