Statement of decisions

so I got my statement of decisions today. It is quite simply terrible. It is a prime example of why medicals are innapropiate for people who have mental health problems. My mental health problems are complex and require long term pyschotherapy, which isnt available on the NHS. The decision maker, or the person doing the medical doesnt seem to understand that for some people, the NHS is not going to offer them the care they need. Trust me, I would love not to have to pay 45 pounds a week for my therapy, but that is the way it is. Because of this, and the fact I dont take anti aniexty medication means I must be faking it and be perfectly healthy thank you. It stated I dont access mental health services, I am guessing they got that from the physcotherapists letter that they were sent as evidence? It states that as I have seizures "only" once or twice a day lasting a few hours, that I am perfectly safe to cook in the kitchen and use a bath or shower. They negated to mention that both the kitchen and water and specific trigger points for me to have a seizure and that I have no warning of a seizure. It reads like I can pick and chose the times of my seizures and can fit washing and cooking around those. Of course, yes. It makes no mention of the fact I had a breakdown in the medical, and could hardly say my own name let alone anything else. I needed "no prompting" and showed "no signs" of cognitive impairment. I struggled all the way through the medical and couldnt even answer the basic maths or english question at the end. It stated that I got to the assessment centre on the tram and I travel on the tram so am perfectly fine, no mention of the fact I have to have someone with me at all times because of aniexty (which i dont have, see above). I dont have any issue with budgeting because we have a joint bank account and direct debits. Make of that what you will, as we said, its my partner who deals with that, I'm just on the account. Its time to fight. but first I must go and have a 3 hour soak in the bath all by myself and then go cook a three course meal before travelling to some far flung country tonight. with all the money, we dont have...

ids has gone, but..

So the news tonight is that Ian Duncan smith has quit. That's great, hes gone, but my life goes on. Today I got my PIP decision, zero points, I repeat zero points. Just as a reminder i had a panic attack during my medical. I have to wait until Monday before I ring to find out what's happened. I hope its a mistake. I didn't want to tell anyone, not until I found out what was going on. But with this news I am reminded from disability studies that the personal is politcal, and it seems apt that today both events happened. Life goes on, peoples lives are being ruined. In four weeks time we lose our DLA, carers allowance, income support and housing benefit. In four weeks time my husband, 2 year old and I will have no income. And IDS resigning wont have any impact on that.

The aftermath of PIP

Dear ATOS,
I'm angry, and I'm angry at you. For the Last five years or so I have been working damn hard to improve my life.
I met someone, who went from friend to fiancé to husband to daddy in the space of 2 years. I owe a whole lot to him, he showed me that I could rather than I can't, he showed me that life was possible.
Then there's my therapist too. He's just been there all the way through supporting and encouraging. After my diagnosis and being shown that's what I needed to improve that's what I found, long term psychotherapy. I can't get that on the nhs, so I pay for it myself, with my DLA.
I pay for a lot of stuff with my DLA. The tiny things like more clothes than we need so we don't have to wash so often, the food we have in that I can cook if I happen to need to that night (ready meals, tins easy stuff). Then there's the bigger stuff, like my therapy, or the extra freezer for the ready meals or the decent sofa bed for downstairs when I can't get upstairs safely and nursery and childcare to help us survive. Or there's the day to day stuff like the coffee shops we go to so he gets a break from cooking at lunch or the more expensive pre cut apples so I can give our daughter a decent diet.
Being disabled is expensive, even more so a disabled parent. But I have worked hard, I have improved a lot, but there's two important things with that. Number one, my improvements come with a cost, the workarounds and stuff we do to make life manageable costs, and number two, I walk a thin line. If I have a bad day (in terms of my own spectrum my good days would seem bad to you probably) I can fall off the recovery track pretty quickly, thankfully though I have support in place to yank me back pretty quickly.
So let me come back to my anger, now I have set the scene. Back in September I was "invited" to claim P.I.P, the replacement for my D.L.A. I got my forms in with evidence and waited.
Two weeks ago I received a letter to go to a "medical". There is nothing that can be determined from a medical of this fashion for mental health problems aside from if you have a breakdown in the middle of the assessment you have proven you are indeed entitled to benefit. Its pretty cruel and inhumane to be honest. To intentionally put someone through something that you hope will be traumatic enough for them to display external symptoms to you that you can then input onto the computer.
Unfortunately for me I succumbed. About five minutes in to be exact. There was noise coming from the next room and when I asked if we could move and she said no I broke down. I was forced to continue with the interview, that or return at another date, with no guarantee of a different room and the prospect of another week from hell waiting for the new appointment I had to keep going. I had music which I treated as white noise to keep going.
And this is why I am angry. In the space of that one hour they put me back five years of recovery. It wasn't just having to focus on all the things I can't do, rather than celebrate that I can still do them, might take me a while or I might need some help etc. The biggest thing has been the way my confidence has not only been ruined it feels like it has been torn apart, stamped on and damaged beyond repair.
My confidence, in myself and my abilities was the one thing I could rely on. Being able to pretend I could do it or be "normal" to outsiders was half the battle. It took me five years to build that up for it to be gone in an hour.
I second guess myself now, i'm not even trying to be positive. I'm not even trying, what's the point when i'm so useless I can't do it the same as anyone else? It took me five years to learn to forget everyone else and to learn that it's only my standards that matter.

I feel used, objectified and useless. I just hope I can get my benefit so I can spend the next five years building myself back up again.

recovery

brain like mush. had appointment today.
had a complete breakdown in PIP medical because the noise from the persons medical next door was audiable and made me very distressed. the assessor said there wwere no other rooms available and i had no choice but continue or rebook an appointment again, but after the weeke  i had knowing i had it i couldnt hav gone through it again so i had no choice but try and continue.

i took a minute with my mp3 player and music to calm me down and had to listen to it for the resot of the interview.

i hope i answered ok becaus i was so distressed i was strugglign to form sentences.

now the long wait for the result.

making a complaint re appoinmtnet, it was extremely distressing and the appointment itself didnt feel private or confidential etc.

and it distressed me so much and i was forced to continue.

grr

the white letter.

I assume too many people weren't opening the brown letters of doom anymore, so they changed it to white, that or the letters are so scared of their contents that they turned white.

However, that aside I got my big white letter of doom today. I have a medical next week for my PIP transfer. I want to record, as best as I am able my journey and my feelings and everything here, because I hope it might help someone else. Not only that I believe that the personal is political and yea, this is personal but its also political. so here goes.

My first thought was that of fear. I have been waiting for this since september, when I got the original transfer letter from the DWP. It took both of us until the start of january to get my how my disability affects me form to them and 3 months to get to a medical stage.

I haven't had a medical before, I went into the support group of ESA without one, and my previous DLA medicals were at home, then decided by the extensive evidence that I provided from my specialist (the same ammount I provided now). I had hoped it would be enough.

Theres no mention of the evidence they have got already so im going to take a copy in case they lost it (its happened before).

After calming down with vast quantities of cake I have read some stuff on what to expect at a medical and It feels like its going to be horrible.

I feel like I am going to have to put on a show of disability for them. To show them how my mental health problems really afffect me. But then it struck me, that my whole life is more of a show, that the things I do on a daily basis to hide the effects of my condition and to try to "pass" as a "normal" person is the actual show. I have been doing it for so long I have stopped noticing I am doing it. There is a certain vunerability involved in feeling forced to show a complete stranger how your internal life looks externally. Thats what Im really scared of, looking normal.