Wednesday, 30 June 2010

"...and then my boobs will basically explode and I'll die."

That is why Mr A should just google shit when I tell him I'm sick, instead of asking 'What's that?'

I'm getting over a bout of mastitis. The anti-biotics did a number on me. I'm nauseated, have a dodgy tummy, and keep feeling very... I can't describe it. Wiggly. Like all the molecules in my body are doing the mexican wave. Or something. BUT. That's all ok, because my boob no longer feels like it's going to explode and I no longer feel lie I'm sitting in an ice bucket even though it's 30 degrees outside.

I'm feeling better these days, and worse. I'm a little depressed about this whole shake-up of the DLA. I know I shouldn't get involved. I shouldn't. But I feel I HAVE to. I feel like remaining ignorant to the issues isn't right. But when I open myself up to the truth of the situation, I feel like I'm drowning.

I'm drowning in the futility of the situation: The big bad government against a small rally of educated cripples.
I'm drowning in the bad press; hyperbolic, sensational stories of benefit cheats.
I'm drowning in the ignorance of the average person about what DLA actually IS, and who can claim it.
I'm drowning in the truth of what will happen if I lose my DLA award.
I'm drowning in the feeling of being worthless, scum, a scrounger, no good, a waster.


I'm in tears writing this. The worst part? The words of fellow disabled people. People who feel that their disability is more worthy than mine. People who campaign for ramps and toilets and better chairs, but who would happily consign me to being sent back to work or, more realistically, just being much much worse off.

I try so hard not to judge people. In the car park the other day a man driving a car with a blue-badge rushed into a parent-and-child parking space that Mr A and I had been patiently waiting for. When Mr A pointed out it was a P&C space, not a disabled bay, and that the disable bays were further down (closer to the store entrance, in fact) the man became belligerent and rude. We drove past an empty disabled bay just 10 parking spaces down. He hadn't even bothered to check for one before taking the last P&C space. We had to park at the back of the car park so as not to get boxed in, and I had to limp across the car park.
That man judged me and my family. He decided arbitrarily that his desire to not bother to look for a more suitable space and his right to park where he liked, outweighed my need to park in a P&C space (for those without children, P&C spaces are important, because getting a baby into a carseat when you can only open your doors a foot is dangerous and difficult. P&C spaces usually also have safer routes to the stores, so parents don't have to walk children through open roads where there are blind corners made by badly designed carparks. Sometimes they aren't even closer to the store. Just safer and wider than regular spaces) He decided that I didn't need that space as much as he needed to stop driving RIGHT THAT SECOND.
Now, had there NOT been a free disabled space, I would have been the first to tell Mr A to give the space to him. But the act is that he can park in the disabled space, we could not. He had two spaces to choose from. We had only one, and he chose to park in that one space.

This is all getting a bit garbled. There was a point..... in that, people like him would look at me and go 'Well the medical assesment will weed out people like her! Send them back to work!'

I'm going to write a seperate entry about this...I started writing it in one entry but this deserves it's own one.


  1. [hug, again, as usual]

    As someone with CFS/ME, I've kinda filtered out a lot of what being changed about the DLA on the grounds that I've enough stuff to worry about at the moment/have been so self-involved or involved in the lives of a couple of friends that it's not really registered.. so thank you, first of all, for bringing it into my consciousness - it's something I really should know about.

    Secondly: I would never, ever park in a P&C place, even if - as is often the case - my legs are barely working, so that disabled guy's a total twat; it's obvious that disability can make a certain type of person feel their needs totally over-write everyone elses. I think you really should apply for a disabled badge too though, hun, as it's very clear you need one :(

    I always feel other people have more 'legitimate' disabilities than I have (but that's mostly because I'm an illness-denying numpty), and in a way I'm glad I need to use a walking stick as it's a very visual clue that 'something's up' (I've had an old guy mouth stuff at me when I've waited for a disabled parking space, and had him shuffle off embarrassed when I've waved my Blue Badge at him.) However, it IS valid, and so is yours - and the attacks from other disabled groups are all fear-based, which is a very sad reflection on the lack of community/society there is today (what in the hell happened to protecting the weakest in society? Who has the right to judge?)

    This brought me to the verge of tears: "I'm drowning in the feeling of being worthless, scum, a scrounger, no good, a waster."

    I had an appt at my local Jobcentre on Monday, to see what support they could provide to 'get me back to work' and, like last time, I was so tired I could barely speak and needed help to get back to my car. The lady wrote: "no action for the immediate future", or something similar, and I felt awful. I can barely cope with what I have to do, let alone add some form of work to my daily routine, but the idea of not contributing something, of being a 'no good scrounger, waster' is something I too feel very keenly and deeply. I know how it eats away at your self-image, especially when it seems society/media sees you that way, too.

    But you are not 'scum'. You are not, in anyway, 'worthless'. You are an incredible, intelligent, sensitive, strong, articulate, intense, huge-hearted woman raising a child at tremendous sacrifice to yourself, and a force for good in this world. Please, never, ever forget that [hug]

    Sending more love and hugs xx

  2. *big hugs* Your comment was so lovely, I read it this morning before I got out of bed and it almost made me cry.

    I too, am an illness-denying numpty. I can't help it, in my parents' house you had to have a leg falling off to be considered ill, and it taught me that I'm just weak and should just power through. Which is bollocks, actually, but when it's what you're taught your whole life how do you get away from it? The rule in my house if we wanted to stay home from school was 'You'll feel better by lunch.' So from the age of 6 I've been pushing myself past my instincts, on the basis that if I put up with a few hours of pain/discomfort/illness, I'll feel better. This is probably a fine principle if you are not broken fundementally, and when pushing past illness for a few hours doesn't have long-term consequences, but I'm ure you know what happens when people like us do it.

    People keep telling me to get a blue badge, but I really can't. I'm too ashamed. It's so hard, not having a diagnosis, I don't feel like there's anything 'really' wrong. This is a bit of a self-perpetuating cycle, actually. I don't feel 'legitimately' disabled, because I don't have a diagnosis, so I won't go and GET a diagnosis, because I don't think my GP will take me seriously. So I never get diagnosed. So I don't feel legitimately disabled. So I don't go to see a GP... I keep meaning to go switch GP's but there's always a REALLY good reason not to. Because I'm a big scaredy cat. It makes tons of sense, right? Right.

    You'd be surprised how many people don't consider raising children as a gainful use of your time. Not eanring moneyand paying tax? Then you're not doing anything! Lame.

  3. Yes, it makes a lot of sense to me.

    Every 'concession' to my illness (a walking stick, a wheelchair, blue badge, DLA and now the limited properties I can look at) is another blow to the idea that I don't have anything wrong with me, and I'm somehow DON'T have the 6'6", built-like-a-brick-shit-house physique (and associated strength) that I think I have.

    My ex-mum-in-law gave me a good way to look at it: I'm not disabled, I just have a disabling condition. It takes away the stigma of the label applying to me as a person, and becomes something I just happen to have, like my hair and eye colour. Like separating the behaviour from the person, I guess.

    All I can advise is... Given that you've already qualified for DLA Higher Mobility etc, getting a badge should be a piece of piss; the hard work will be done for The Powers That Be. On the form I've just filled in to review, all I had to do was fill in my name, tick the box and submit a photocopy of my letter showing I get DLA Higher Mob and the rate.

    At least apply for the forms, hun. Just because you need a blue badge is not a comment on you or your worthiness to have 'em, we all need help some times and I know (I REALLY know) it's a pisser, but if it frees up more spoons for you...

    [another big hug]


  4. Sorry, just seen the typos - renew my blue badge, not review.

    The anti-spam 'word' made me chuckle, given my BMI's dropped to 17.1 now, lol.. it was 'undiet'!!