Thursday 22 November 2012

DLA decision

So, I got my DLA renewal decision in the post today.

High rate mobility, low rate care, for two years.

Not best pleased. I was scared they were going to take it away entirely because I'd started working, but my care needs have increased massively. LRC is seriously not appropriate any more and hasn't been for over a year.

I did apply for a supersession, but they made a complete fuck-up of it. Went to appeal, even with disastrous ATOS report, cos GP had promised to support me when time came to write letters for tribunal. Long story short (because I'm still too traumatised to go through it, although I'll try and document it some time) he refused and I had to withdraw my appeal, as the tribunal chair who hated me from the start, told me flat-out that I would lose my HRM and therefore my car if I continued.

By the time my supersession got to appeal, I was due a renewal of my award anyway, which is what I just got the decision on.

They've contradicted themselves so much. I am virtually unable to walk, but I have no problem getting up and down stairs, in and out of a chair, or in and out of bed, according to them.

I am at risk getting in and out of the bath or shower and using a bath or shower, they say. Yet they also say I don't need help to bathe or shower. I mean, WTF? This is elementary logic. It isn't difficult. Even someone as hard of thinking as a DWP decision maker should realise they're talking gibberish.

They used my claim form, and a (completely false) ATOS medical from APRIL - over six months ago - and no other evidence. I wrote on my form that my GP knew most about my condition and treatment and would get the best and most accurate evidence from him.

Interestingly, the mobility decision says I can walk 75m, albeit slowly and in a poor manner. I really can't remember the last time I walked 75m without falling/stopping/experienceing excruciating pain.

Under 'preparing a cooked meal', it says I need help to carry and lift safely. Yet I don't need help several times throughout the day. Er... how am I supposed to eat/drink/*do* anything?

Under day attention, they agreed I need help to wash and dry myself, dress and undress, eat and drink, and communicate. So I'm not supposed to do any of these things during the day?! No eating, drinking or communicating unless it's getting up or going to bed time? FUCK THAT. That's before you get to the issues with lifting and carrying and the consequent spilling and changing clothes. And the dressing and undressing - including enough to go to the loo and clean myself up after - I'm not supposed to do any of that in the daytime?!?!

They have said that during the day I don't need help to get in and out of bed or a chair - I nap/rest in the day a lot so this is a daytime activity for me. I need to undress at least partially to be comfortable lying down. I can't walk, but I can get up and down perfectly easily?! I need help dressing and undressing but can put myself to bed - am I supposed to sleep in my clothes?! I'm already worried about pressure injuries when I spend any time in one position - jeans with rivets, belt buckles, hefty seams are going to make that *much* worse - the pain as well as the risk of pressure injuries. I'm not slobbing my life away in PJs, either.

Don't need help to use a bath or shower - but am at risk 'getting in and out of the bath or shower and taking a bath or shower. Logic fail.

I am virtually unable to walk. My house is totally unsuitable for me to use my wheelchair indoors - it's upstairs, for a start. Yet I need no help moving about indoors? WTF?

I need no help managing my treatment or medication. That's be why I can't do my physio without falling and getting stuck in pain on the floor, or remember my meds without Dave reminding me. Why I can't open my oramorph, regardless of whether it's a childproof or normal cap. Why I can't take my liquid meds with a spoon without pouring it down my cleavage - resulting in undressing/washing/dressing needs.

I am virtually unable to walk, but not at risk of falling. Huh? The falling is part of the reason I am virtually unable to walk!! and it's exactly the same on a level indoor surface as it is on a level outdoor one. More logic fail.

I'm not at risk of harming myself. That'd be why I struggled not to attempt suicide when they forced me to take it all to an appeal, and I couldn't get any help at all and had to withdraw because I was threatened by the tribunal chair. Why I replaced cutting myself - which I'd not done for over a year - with biting and scratching myself so my husband didn't catch on.

I'm not at risk of danger from blackouts or dizzy spells, or falls, they tell me. Apparently they've never heard of POTS in EDS patients. I also have low blood pressure normally, as well as severely impaired proprioception - not a great recipie for staying balanced, non-head-spinny and upright. That's before you get to the side effects of my meds.

Amitriptyline makes me sleepy, blurs my vision (which sucks anyway) and makes me dizzy and light headed, and occasionally palpitations.

Sertraline also has side effects of tiredness, dizziness, shakiness, palpitations, and muscle pain.

Morphine sulphate SR, and liquid morphine sulphate suspension, have side effects of drowsiness, especially getting up or down (but I don't need help in or out of a bed or chair or moving around indoors!!), vision problems, and palpitations.

Add in fragile connective tissue, hyperalgesia and allodynia from fibro and EDS, and easily subluxed and dislocated joints - clearly, I *am* at risk of bloody falls. They. Make. NO. Sense.

The reasoning for 'during the night' is the usual 'at your own speed, you can safely..'
I'm often up during the night. I'm also subject to all the problems I have during the day - I need drinks, sometimes food, I need the toilet, I may need to wash and change if I've spilled something/not managed to get to the loo in time. I need medication, which I cannot open bottles of/get out of packets - especially as my fingers tend to dislocate themselves if I get any length of time asleep.

Sleep comfortably? Are they kidding me? I don't even remember what that feels like. I'm only vaguely aware that it's still possible for people who aren't me. Turn over, adjust bedclothes, change position - inability to do these would be part of the reason I *can't* sleep comfortably, except they say I don't need help with them.

I'm really pissed off, in a depressed kind of way, about this. I think if it had to be an appeal again I probably would kill myself this time, I came uncomfortably close last time, and I really think the whole experience has just added to the PTSD I already have from various horrors in my past.

And yet, I need the help. I need the money, too, rather badly, but at this point they've screwed me up so much I care more about getting them to admit that they know my care needs are much greater. I think I'm going to start with asking for an appeal just to get the reconsideration if that makes sense, and send more evidence (newly arrived, so didn't make it into the DLA application pack). Fingers crossed. I hate them.

There's a story from a former DWP worker who ended up on sickness benefits floating round at the mo. It reads, to me, very much like the 'but I'm not a scrote!' special pleading you get from Daily Mail readers who've found out they're not immune after all. Plus, I'm probably going to be called all the names under the sun for this but - serves you fucking well right. Eat karma, bitch. He spent many, many years screwing people over, treating them - and making them feel like - subhumans. And feeling absolutely no empathy, remorse, or moral qualms of any kind, as he openly admits. Why the hell should I care?! He thinks he's a victim now? thinks he should be treated better? I think he's getting exactly what he gave out for many years, and that what goes around, comes around.

Argh. DLA/DWP make me absolutely fucking crazy, there's just no need for them. Petty, soulless, morally bankrupt little-tin-god tyrants. No sympathy for anyone who took that job voluntarily, none at all. I cannot take this fucking stress again! I cannot let them fucking lie about me to everyone!?



Monday 19 November 2012

Spending time with my Dad, and pain vs fatigue

I love my Dad to bits. He and I fought like hell when I was a teenager - the usual story of him wanting me to stay his little girl and me wanting to be acknowledged as an adult, plus a side of him being hugely stressed out and me going crazy.


These days, I feel like I've got my Dad back. We went Christmas shopping for Mom today - had good fun and a laugh, then came back to mine, and put the world to rights - usual mix of politics, philosophy and general bitching about idiocy.

I love the fact that my Dad (and my Mom, for that matter) are people whose company I enjoy and who I like to spend time with, as well as being related.

Again, I'm reflecting on the fact of just how incredibly lucky I really am. I love my family, and they love me. When I was in the psych ward and fully believed they'd be absolutely justified in abandoning me, they were there every step of the way. No panic, no 'why are you doing this to me?' - just 'when can we come and see you and what do you want us to bring for you?'. Amazing. Lots of people believe their family love them and would support them no matter what - I have had the amazing privilege of seeing my family prove it to me. I *know* that it's true.

Today has been an odd one. Lots more pain than usual, but a fair bit less fatigue, as well. This actually works out a better deal for me - I actually have some semi-effective pain medication now, so I can always kill some of the pain with drugs when ignoring it and bullying through it has reached its limits. On the other hand, I have absolutely no effective techniques for managing fatigue. Zero, zip, zilch, nada, niet, nothing. Sleeping doesn't help. Resting doesn't help, pacing doesn't help, there's no medication I can take for it - if I run out of spoons, or wake up with them in short supply, then there's nothing I can do about it whatsoever. I just have to give up on whatever plans I had and use my precious spoons for things like breathing and eating.

So, yeah, give me pain any day. Although, I have to admit, both waking up with the majority of my fingers dislocating, and my persistently subluxated shoulder, are getting on my nerves. I think it may be Oramorph o'clock again...!

Oh, and this month's supply of lactulose solution has turned up in a bottle that makes it look like floor cleaner, much to my amusement!!

Sunday 18 November 2012

On therapy and life skills

Today I have mostly been marvelling at how much I've learned about coping techniques, mindfulness, and distress tolerance. When they told me therapy would be a long process, I didn't realise that they meant about fifteen years...

I used to be vehemently against therapy. I was totally wedded to a purely biochemical-dysfunction model. In a way, I still am.

Therapy didn't 'cure' my mental health problems. It had absolutely no effect on them at all. Therapy does not fix people, or their mental health problems.

What it does do, however, is teach you how to live *through* your mental illness. It teaches you the skills to live your life, whether or not your mental health ever improves or can be controlled by medication. Distress tolerance, insight, emotional expression, communication skills, all sorts of things like that. Skills that mean you don't need to get *rid* of your illness, problems, differences, idiosyncracies, whatever you want to call them, however you personally see them.

It's also helped a lot in dealing with the progressive disability caused by my physical condition or conditions (still not got a definitive answer). Long term illness and disability is commonly accepted to increase the likelihood of someone experiencing depression. The techniques I've learned for coping with, working around and living through depression work just as well for depression caused by my physical limitations and the disabling barriers imposed on me by society, as for depression caused by a chemical imbalance, crappy childhood, whatever you attribute it to. Whatever the cause, for me at least, as the effects have been the same - so have the methods for dealing with it worked equally well regardless of what caused the depressive episode.

Therapy has been more valuable to me than I ever expected it to be. Especially given I went into it out of sheer desperation, having exhausted other options and deeply wary, cynical and unsure. However, I have to say at this point, that I consider 'therapy' to be distinct from 'positive thinking', 'behavioural modification', 'attitude changes' and all the other bullshit, rubbish, and unscientific victim-blaming crap.

I consider cognitive behavioural therapy and the biopsychosocial model of illness to be the greatest scams in medicine in recent history. The idea that negative expectations and thinking badly about things is the reason that illness - mental or physical - has a negative effect on a person's life is ridiculous. The negative aspects are real, quantifiable problems, with a negative effect on quality of life - they're not just hysterical psychological constructs invented, consciously or unconsciously, to allow someone to avoid being a responsible adult human being.

Teaching someone how to tolerate and deal with distress is helpful. It increases their ability to cope independently, their control and autonomy over their self and their life, and their chance at a decent quality of life.

CBT/BPS on the other hand, just tells the person they are to blame - that they are responsible for the fact that they are defective. They have been so *wrong* that they've made themselves ill. How does that help? It's about as useful for depression as 'snap out of it', in my opinion. It almost *is* 'snap out of it' - it says, you're doing it wrong, just stop doing these stupid things and you'll be fine. I cannot see how that improves someone's quality of life - how it gives them more control, more autonomy, more ability to cope in a way that improves their life.

I am so grateful for the skills I learned in therapy. I lucked out completely - I had a great CPN who referred me to a scarily intelligent, highly qualified clinical psychologist who was amazingly skilled. I will be forever grateful to the CPN and clinical psychologist - I honestly believe I would be long dead by now without their help. It was not easy - hell's bells, sometimes it seemed completely impossible, beyond even imagining, much less achieving. But those two smart, skilled, compassionate women cared enough to kick my arse when necessary for my own good, as well as coddling me when that was what I needed - and to put up with the tantrums and avoidance meant to drive them away as I tried to protect myself.

And, as I said, I found these skills even more useful when my physical health took a nosedive. Again, I think I would have killed myself long before now - especially during the period I was being denied any effective analgesia and accused of malingering, which I've found out since is actually a normal experience for anyone with mental health issues in their records who then develops a physical illness.

I've been severely depressed since I was twelve or so. I made my first suicide attempt - a very poor attempt, but nonetheless - at thirteen. Had my first psychotic episode at about seventeen. Hospitalised for a suicide attempt for the first time at twenty one. Admitted voluntarily to a psych ward at twenty four. It's not a good history, and most people with one like it can be expected to be in and out of depression, psychosis and hospitals for the rest of their life, with limited periods of stability.

I am incredibly lucky, and I know it. I've had a fairly minor episode of depression recently, but before that I had over a year of more or less normal mood - the longest period I've gone in my memory without feeling incredibly awful. I am so grateful for the happiness I've experienced - I've been _able_ to experience - over the last couple of years.

In short: therapy is brutal, gruelling, unpleasant and takes years if not decades to show any results. And it's worth it. Every last painful second.

Friday 16 November 2012

Polling Station Fail

So, after reading halfagiraffe's excellent post about access to democracy yesterday, I sort of exploded all over her comments section. Er, sorry, Becca....

Here's what I wrote about my experience of trying to vote in the PCC elections - the first election since I moved here, and thus my first visit to this polling station.
I've had a similar experience today. Perfectly accessible town hall and library, with parking, very easy to find. Polling station small 'parish community centre' for local church hidden down tiny cul de sac - clearly God loves everyone, as long as they can walk.

I tried four different routes - there isn't a wheelie accessible route. In the end I threw my chair off two six-inch-plus kerbs (only one of which I knew about beforehand), killed half a dozen inconsiderately abandoned wheelie bins, got stuck in a main road along the road-side of parked cars three, four? times, was foiled by one set of stairs and then finally found the stupid bloody place.

Only, the pedestrian entrance was in the wall, with a railing panel at the kerb about 2' away - ie, not room to turn my chair and get in. I had to go in via the car entrance, nearly got run over twice by idiots, had to go over four of those small sharp yellow and black speed bumps and glaring cynically at the wheelchair symbol on the entrance sign, wheeled around the building.

Found the entrance - two big steps, of course and a too short, and therefore too steep, wobbly temporary ramp, up to narrow, only one side open double doors. It was truly frightening. I only attempted it because I was mostly frozen after lengthy attempts to find a wheelchair accessible route and really needed to get indoors.

Once inside, weird twisty route, a random row of chairs totally blocking the centre of the room except for a gap barely as wide as my chair which six totally disinterested polling staff gawped at me negotiating.

I pointed out polling stations should be accessible to everyone and got no response. I'd have called it a blank look except they'd all been gaping since I appeared. No wheelie-level booth, so no privacy. No pen. No surface to lean on. And the ballot box on a table so I couldn't reach to put my vote in. More gawping, no help.

Left, battled back home, cursing vehemently at pretty much everything including a church owned wheelie bin left over the only drop kerb in sight - thanks, tolerant, loving, inclusive religious types - and almost crying with fear that I was being forced to trash my £2k powerchair that I cannot manage without and have absolutely no way of replacing.

Democracy, my ass. Apparently what makes one a citizen is functioning legs.



There was a fair amount of outrage on Twitter, and a supportive comment on Becca's blog, and I began to feel that at least it wasn't just me that found this unacceptable. I forgot to mention that the building wasn't actually visible from the road (as a wheelchair user, anyway. Dave could see it, but Dave is better than six feet tall). The only polling station signs were on the pedestrian gate (the one that had one of those 'you can't bring a bicycle through here' zigzag things) and on the car park gate, which faced the church at the dead end of that street.

Then there was a comment on Becca's blog which seemed basically to say that anyone who finds something inaccessible should be causing a massive fuss and demanding it be fixed, and there are so many inaccessible places because those disabled by lack of access don't protest enough.

I didn't like this. At all. I have to admit, I thought some very unkind thoughts about the writer of this comment - I'm probably a bit oversensitive, because I got a lot of these unthinking, glib 'it's easy to fix! just do <totally obvious thing you tried to start with> and it'll be fine!' when I was trying to find help with my DLA appeal via Twitter, and being bombarded with them at an already insanity-inducingly stressful time, I started telling people not to be such smug bastards and blocking them.

I restrained myself and replied. I think I did OK - I tried to be respectful and reasonable whilst still being myself and expressing the way it made me feel and the assumptions that seemed to me to underlying that kind of smug dismissal of someone else's serious problem as a trivial matter. I didn't swear, which given the kind of rage overreaction I have to things like this, is a minor but significant acheivement in itself :D

This is my reply:
David, thank you for your outrage. Helps to know that other people find this as disgusting as I do.

Witsend.... I recently tried to see my MP about something else. His office is down a cobbled lane, up two *huge* steps and there's no ramp. All that happened when I complained was a huge list of defensive comments about how it's 'too expensive' and a listed building. I tried to be constructive, and suggested two things - a doorbell, and a ramp. One about ten quid, the other about £150. Could well be expensed - legitimately, unlike some other things - and was told it's a nuisance and too difficult. MPs care less than Joe Public, and it's hard to tell if he cares at all.

Loudly protesting my rights does nothing but get me assaulted by 'security' staff. It really really is not as simple as 'make a loud noise', and we have lives to live in the midst of all this crap the not-yet-disableds pile into our lives with merry abandon. That doesn't mean I don't do what I can about the discrimination I encounter, just that I pick my battles very carefully.

I've got to say, I've had a lot of people tell me lately 'oh, you should make a fuss, it's against the law, just shout louder', etc, and I actually have to fight myself not to reply with cursing and venom. It's overly simplistic and doesn't take into account that I have less energy to spend, each activity costs me more energy and I have significantly more activities to do than a not-yet-disabled person just to survive.

It glosses over the reality that laws not enforced are meaningless, and any law that requires a member of a marginalised group to obtain definite proof and a lawyer to enforce, won't be enforced. It ignores that one quarter hour bus ride can throw up enough potential fights for my rights to keep me busy for about three years. That is not hyperbole - it really isn't. Local Govt Ombudsman about pavements and drop kerbs - 18months, if you're lucky. Bus company about drivers who grab my chair and heave me about - endless, basically, as is a complaint that the passageway past the driver is too narrow and too sharp a turn - they're not going to replace all their brand-new buses, not for anything, and disability is very low priority. Assault complaints about members of the public who toss their kids into my lap when they're tired of holding them - this has happened - again, endless, even when resulting in dislocated hip and subluxed knee. This is before the bus even sets off.

I'm not trying to be unkind, but please don't assume that a glib slogan is in any way relevant to the complexity and overwhelming demands life as a disabled person is for me. That kind of minimising puts the blame on me - if I shouted louder, tried harder, fought longer, it'd all go away.

I think there are a few underlying inferences that are quite startling.

The first is, of course, that it is the responsibility of disabled people - individually as they encounter barriers and collectively over time - to solve access problems. Just think about it for a moment. That seems to me like telling black slaves in the American Deep South to just stop acting so subservient and sort their own problems out. This isn't a problem with me, the disabled individual - this is a problem with society, from its physical structures, to its social codes and expectations, and its implicit and explicit attitudes about the equality, humanity and worth of human beings who are disabled. It would be unthinkable for older, rich white non-disabled men to be on the receiving end of attitudes, behaviours, policies, social conventions which impacted them this way. It is literally incomprehensible, and that is because society automatically regards this group as important, regardless of personal actions or contributions to the whole.

That's the second big problem. The idea that disabled people are of no value. That it's really OK to fail to consider us - to deliberately exclude us - because we're not worth it, like real people are. I literally cannot find the words to express my horror at this. This concept of disabled people as 'other' is, in my opinion, responsible for every last instance of discrimination, hate crime, or inaccessibility that happens. No-one would do this to themselves - it's done because we are _not_ them, and they assume they will never be one of us. They're wrong, but sadly if something happens to correct their thinking on this, it's by definition too late - because by then they've become 'other', just like us.

The third one is the one that makes me angry, and feels like a personal slur. It's the assumption that I am, of course, too stupid and incapable to have thought of this very simple and obvious action which will *of course* solve my problem entirely. That I have made no attempt to think about the situation - that I am incapable of thinking about it - and cannot possibly have made any attempt to resolve it.

I cannot be alone in finding this both far too common and highly insulting.

And, sadly, impossible to communicate with any accuracy to the not-yet-disabled.

Anyway, I will be complaining to my local council - especially as the local library and Town Hall are both very accessible, available, easy to locate and have ample parking, and provide a vastly better alternative. I will also be taking up my ongoing argument with them over the state of the pavements and drop kerbs, and the fact that disabled access is consistently at the very bottom of the priority list, no matter what activity of the Council is under consideration (I'd like to point out that I don't consider Social Services to be part of the Council - and they have been utterly brilliant; friendly, social-model-aware, engaging and empowering, as well as willing and eager to listen to suggestions and complaints).

I'll let you know when (if) I hear that the tigers are finished with my letter. *sob*.

I finally have something to say.

So, previous attempts at blogging have usually failed dismally, petering out after a few random and uninteresting posts.

More and more, I'm finding that becoming progressively more disabled, and now a power wheelchair user outdoors, has finally meant that I have something I want to say. A lot of things, actually - not all directly to do with disability, although a lot of them will be. Disability has given me a life, in a very odd way - it's indirectly responsible for where I live, who I married, my self-employment, what my house looks like, how I dress and look, my politics - and my interest in politics... so much of my life has been affected by it.

And yet I don't mean that in the negative manner that phrase is usually used. I'm happier than I ever remember being before. I have a stable home which meets my needs (once the ramp they surveyed for on Thursday is built, anyway!). I have a husband who I love and adore passionately and who reciprocates those feelings - and who is at the same time, my best friend and my main carer. We have more-or-less achieved financial solvency, which is nothing short of a miracle in the current climate of Economic D00m. I have started a business making beautiful things for mony, which makes me calm and happy. I have certainty; about who I am and what I stand for, about love and family and security and all the things that really matter to me.

Without my disabilities, I can't see a way my life would have been like this at this point. To use social model definitions, I don't dislike being impaired - I actually like who it's made me. I passionately hate being disabled.

Every set of stairs that's the only route, every missing dropped kerb at a junction, every bus where the ramp is 'broken' or a parent won't even consider folding their giant tank-like pram which is occupying the _wheelchair_ space - they disable me. They make me other, lesser, unworthy, unimportant, unequal.

So often, it's not a question of money. It quite often takes just a little thought, consideration, or a few moments to fix some of these problems. The level of self absorbed inconsideration I witness every time I leave the house is breathtaking, even thought I know it's coming. Yet, at the same time, I can't twist my brain around the fact that these are the same species, the same population, maybe even the same individuals who are so kind and understanding it makes me want to cling to their leg in a hug of awed gratitude.

The guy who chased my hat down the street that windy day. The elderly gent at the hospital who helped me push my wheelchair up the hill, when I had a manual chair. The person who stops, asks if I'm OK, and after I've replied with 'yes, I'm fine, thank you very much for stopping to ask though!' nods, smiles and carries on their way, accepting my decision. The receptionist who comes around the counter to talk to me because it's the wrong height and we're having trouble communicating. The patience of the woman answering HMRC's helpline when I explain my speech is impaired and this might take a while.

How can such generosity, kindness and grace co-exist with the selfish mentality that says my needs are unimportant, that it's my own fault for being defective?

Human beings baffle me, all the time.

So yeah, I think I've finally found something that's worth saying.