Saturday 28 May 2011

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.

Wednesday 25 May 2011

Rehumanizing

I spent part of today (far too large a part, I might add) in a room full of uncomfortable chairs. I sat below a TV, but couldn't change the channel when 'Jeremy Kyle' came on (the remote has been lost for a considerable period of time). I had to wear my bathrobe over a medical gown, and some paper underwear, and so did all of the other strangers sitting in the room with me. This was my pre-day surgery 'patient experience'. As someone who has spent a lot of time over the last 15 years to try to make being a patient a little bit less dehumanizing for my patients. I found being patient when I was expected to just get in line and bleet! and BAAAAAAAA right along with everyone else infuriating. The staff were fantastic, supportive, and demonstrated respect for me and for each other. The environment leached all of that away. I imagined how scared I would be if I couldn't let people know I was uncomfortable, how angry I would be if I couldn't bitch about the paper pants and have someone understand me. We need to change things, but how can we, when most people don't see the conveyor belt or some way for all of us to get off of the damn thing? People are not products; real human experience can't be manufactured.

Tuesday 24 May 2011

Ode to Naproxen Sodium

I feel as though my life should be sponsored by Naproxen Sodium. Between an arthritis flare and the usual Dead Leg/ CRPS nonsense,  I am in excruciating pain and am so irritable even I think I'm being snarky. I am also extremely too sleep-deprived, and am losing my command of the English language, so if you were actually expecting an ode, you are going to be SERIOUSLY disappointed. This is all I've got, and I think it is probably more of a paean to coffee.

Naproxen Sodium
sounds so much more exciting 
than it is,
so much more important.

Caffeine is marvellous,
an antidote to exhaustion,
though the coffee that carries it
competes with Naproxen Sodium
for my stomach lining's attention.

See? Complete shite.

Sunday 22 May 2011

What's In A Word?

The first time I remember thinking of myself as a 'feminist,' and not just a fiercely competitive tomboy with a "terrible attitude," to cite an expert on young women who insisted on doing things only boys were supposed to be doing (Sr. Eleanor, 3rd September, 1979), I was 11. I was playing on a guys' soccer team (there wasn't one for girls), and the goalie for the opposing team insisted on referring to me as 'Lady,' despite the fact that our coach had told him my name 27 times. The goalie sneeringly asked if I thought I was a feminist. I thought about overhearing men I knew referring to women as 'feminists' and 'bra-burners'. I decided to say 'yes' shortly before kicking the ball hard enough to take his head off. He missed (or lost his nerve); I scored. I felt awful. Everyone was shouting and celebrating around me. I had lost my temper; I didn't see anything worth getting excited about, and it felt almost as if I hadn't scored at all. Something about it didn't seem fair; I think now that what I felt was a very strong sense that I had let myself down, and let all of us bra-burners down. I still wonder if I did.




Thursday 19 May 2011

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.

Wednesday 18 May 2011

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.

Tuesday 17 May 2011

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?

Monday 16 May 2011

Gimperella Tries to Dress for the Ball

The second most offensive thing about my crutches is the colour.  The most offensive thing is needing them, of course, needing the relief from pain and exhaustion they (might) offer.  I need the crutches, but I don't know what to do with them, so I'll leave them in the back of the car I can't really drive. Hospital grey, with yellowy-beige-ish undertones, is going to be very difficult to accessorise. I can't believe I'm worrying about what to wear to my DLA Tribunal; how do I look disabled enough? What does 'disabled enough' look like? If I'm too well-dressed, too clean, I'll look like a scrounger bilking the system. Not well-dressed enough, I'll look like I don't take the Tribunal thing seriously. I need armour, preferably in an inoffensive floral print.