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.

Thankful, Or At Least I Will Be

So. The 3 Fates, none of them toothless, sadly, have decided that I am, in fact, disabled enough to have the higher rate of the mobility component DLA (again). A year of wrangling culminated in  I feel sort of numb; it isn't exactly something to celebrate, is it, having official acknowledgment that I am f*$%*d. F*$%*d good and proper, like so many of my patients. At least I can speak, and write, and make myself heard, and I had loads of moral support (including Rolos being telepathically beamed at me by @lumpinthethroat when I couldn't find any). I have spent the last 11 years advocating for people in my role as an SLT; now, I need to figure out how best to do it in a way that doesn't involve 4 hours of commuting and beating the hell out of myself.

Oh, and I did manage one other tiny little thing today: my first round of edits is done, and the MS sent off, so that my primary supervisor can have a read through all of the poems and short stories in my M Res collection. If anyone has any ideas about how a poet goes about training as an advocate, or doing whatever I need to do to help other people in the same crappy sinking boat, I am all ears.

All I Can Say

GAH. Yuk. Barf. Hurl. Vomit.  I feel sick. Shaky hands. Shakier legs, especially the Dead Leg. 3 people I have never met, who really don't want to meet or see me or acknowledge that I exist, will make a decision this afternoon that feels as though it will change my whole life. Even to my own ears, that sounds a bit melodramatic. No DLA, no Motability car. No DLA, no Blue Badge. No Blue Badge, no bus pass. No Blue Badge, no renewal of my Disabled rail card. One little freedom-killing thing follows on from another. Walking stick it was, crutches it is, crutches it may be. And to top it all off, my face has erupted in pimples. Great. Now I'm a pubescent-looking 44 year old who walks like a pirate.

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.

Neon Orange, Putrescent Green

I am sorting through a *ginormous* pile of papers (171 pages and counting) relating to my DLA Appeal and my Tribunal hearing on Thursday. The documents from the DLA office are all printed on a vaguely grey, dirty-looking paper that seems to absorb whatever pen I use on it to make notes. The paper is dingy. I feel dingy doing this, grubbing for money to buy freedom with. My highlighter pens are the only bright things around me, and they are blindingly bright: should I go for Insane Orange or Viral Green? And can I really remember all of the stuff I need to ask about/emphasize? AND will the Dead Leg stay quiescent enough for me to think straight?