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.

DLA to PIP

I was "invited" to claim PIP last September. As of today I have handed in my how your disability affects you form, its receipt has been acknowledged so I am just waiting.

As of the 8th February my DLA claim officially ended. I am still entitled to DLA until my PIP decision has been made so I am getting interim payments of DLA, but it is still DLA.

Last Tuesday I received a payment of a quarter of my usual payment and on a different day. Confused I rang them on wednesday when I realised. I hate using the phone and even more so to ring DLA up. They were unhelpful and said I must have been moved onto weekly payments, but that I would get a call back to confirm this. I hate getting phone calls and usually have incoming calls blocked. So, unblocking the calls I eventually got an answer on friday to say that the payment was my final usual DLA but I was still claiming because of the transfer.

I thought that was the end of my nightmare. Nope, today we receive a letter from carers allowance because my DLA has been stopped. This also means that our income support and therefore our housing benefit might also be being stopped automatically. This means another week of ringing around, stress and waiting for answers, that we really dont need as a family right now. And I thought it was "automatic", yea right.

Not only that I applied back in january to my local council for my new bus pass. I explained the problem that I wont be getting my new award until they have decided on it and there are lots of delays. They asked for all the evidence saying it was ok. They have since decided not to give me a bus pass either, until I get my PIP decision. My bus pass got me and my Husband on the bus.

So, now it seems because of the delay to my PIP we are expected to live on thin air...

Have a Happy new year...

I want to share this, not because of my own part in it but because of the lovely response I got.

I was in town with my daughter today, just looking at the sales to see if there was anything worth having. Here in Sheffield we are feeling the brunt of the storms at the moment, not in flooding but it is cold and wet and today was really windy. Its certainly not a day to be out and we were shop hopping to keep warm.

I popped out of one shop and I passed a big issue seller. I didn't have cash on me but I apologised as I hurried past. He wished me a happy new year anyway to which I said you too, not really stopping to think, but more concerned about getting into the next shop out of the cold.

A few shops down was a bakers (they are everywhere in Sheffield by the way so its pretty easy to walk past one). It made me stop and think. I doubled back and asked the guy if he needed a drink or anything from the bakers. He starts putting his hand in his pocket asking if I could get him a sauasage roll, giving me a pound. I refused the money and asked him again for his drink of choice.

I came back to him with his sausage roll and hot drink. I went to hurry off again and he stopped me to reach into his bag. He gave me a christmas card. He was insistent and said he only gave these to special people and that I was to read the message and to keep the card special. I could tell he really meant it and was being sincere.

Here is the card.

On gender indentity, from the eyes of a ten month old (and her mum)

I could have cried in primark today. After a small (ok, massive) accident my lil one needed a new outfit. Shes currently in twelve to eighteen month clothes, which is of itself a challenge. Most baby clothes go up 12 months and most toddler clothes start at 18 months.

Anyway, that wasn't the problem. Rows upon rows of pretty dresses, flowers, bows and general fiddly and delicate clothes that were in various shades of pink invaded my eyes. Asking the sales assistant where the boys clothes were for 12-18 months, she shot me a look that said, but shes a girl but pointed out the small corner of "boys clothes".

I overheard a parent of a boy complaining. She said it wasnt fair that girls had all these clothes and boys had this corner (it doesn't change when they get older). I pointed out that it was equally unfair that girls had to wear pretty pink dresses all the time. The boys clothes were smaller versions of Dad and sometimes even grandad clothes, so very specifically "male".

I am not going to dress my baby girl in either mens or ladies clothes specifically. I am not making that choice. I want to dress her in baby clothes. Clothes that are suitable for her age and stage. At her age, where she is currently cruising around any piece of furniture that she can grasp, and crawling with varying degrees of speed and agility she needs clothes that arent going to be up at her waist after five minutes. Also, shes at the stage now where she happily grabs the fork or spoon full of food from your hand and rams it in to her mouth, sometimes hitting the inside. Shes nearly a toddler. She is discovering the world in her own very messy way. She will get muddy, she will get dirty, and her clothes will rip.

Just because she is a girl wont change that. She wont be sitting in her pushchair saying that crawling and walking and falling isnt for her because shes a young lady thank you very much. She wont be eating with a knife and fork and spoon with such elegance, because thats what young ladies do. She is, just like with any other baby a mess magnet.

As a parent, I need clothes that stand up to that assault. I need clothes that are allowed to get messy and not look like shes a ragamuffin. There is a time for pretty dresses, and there is a time for exploring the world. I dont want her clothes to stop her enjoyment or  restrict her. If you are lady, think about how easy it would be to crawl around in a dress. How uncomfy would it be? Its just not practical.

I have dungarees for her, I have jogging bottoms and pretty tops. Pretty tops that aren't white. Yes, she has some dresses, but she usually wears jeans underneath them. And yes, those jeans came from the "boys" section.

My hour of hell..

 I read this story with tears. Not just as any new mum would, but with my experience in hospital now right at the front of my mind. I want to share this story because it will at least help me to shout and scream and rant and say that it should never have happened. Its already starting to annoy me how the media are making links between her mental health and this incident.
http://www.bbc.co.uk/news/uk-england-bristol-30334855

As a result of my impairment, and my impairment alone I was subject to a full social services assessment whilst pregnant with my first child. Although I asked how I was meant to prove that I was going to be a good mum when I wasn't a mum yet, no answer was forthcoming. The aim of the assessment was not, as it had been first put to me as a way of supporting me as a mum but for safeguarding my unborn baby.

The pressure we had as new parents was immense. Everything had to be perfect, we had to be prepared for things that most new parents hadn't even considered. Upon doing some research on the process we were following I found that mothers with mental health problems are put under scrutiny which results in them having to be better parents than other parents.

We were "lucky". Social services found that there were no serious issues with us and that we had passed the test of whether we could parent or not. By this point I was nearly 30 weeks pregnant and spent a lot of that time convinced I wouldn't be allowed to keep my child (despite reassurances to the contrary). When we finally got the report in writing to say that there would be no more involvement it was the best feeling in the world.

I went into hospital on the thursday and my baby was born at 17:02. On saturday we were all discharged by the medical doctors and were given the all clear to go home.

This was when the problems started. I spoke to my named midwife (every mum had a named midwife per shift) about going home. She said she would go and find out what the next steps were and came back five minutes later.

She stated that we were not going to be able to go home until she had social services approval that we could, as it stated this on my notes. She went on to explain that because it was saturday it wouldn't be done until monday.

My once rational (given new baby brain) head had now just turned to mush. I explained to her that  I could provide her with the report from social services stating we were cleared from their "support". I could provide her with x,y z of things stating similar. But no, she wasn't able to confirm this. As I broke down she did finally turn around and say she would attempt to discover the truth as she went out of the room.

I am so grateful for my Mum in law at this point. As it wasn't long after visiting my husband was now half way across the country taking his grandparents back home. If my Mum in law hadn't have been there I wouldnt have remained as calm as I did (which wasnt very calm).

All rational thought went out of my head and it felt like social services had lied and that my baby who I had spent the last 24 hours getting to know was going to be taken from me. I cant explain that feeling, I hope that most new parents will never have to. I was trying to work out every possible way out of that hospital with my baby. Despite in my logical head knowing that I was in the right and they had made a mistake, it didnt matter. At that point it was real. I couldn't even pick my baby up for a hug because they didnt feel like mine anymore.

Some time (about half an hour or so) later the midwife came back. All this time where I was seriously distressed I was left alone in a private side room with my child. I cant explain the potential risks with that decision, but Im sure i dont need to. She had cleared it up, it was a clerical error.

This was no relief. There was no relief until I was at home with baby a little while later. The special moment that I should have had to take my baby home from hospital was ruined because I felt like I was running away before they changed their mind.

I wrote and I was given an apology, which helped me to move on. But it is stories on the news that brings it all home to me. The judgement and scrunity, the assumptions and the labels and the hour of hell where I thought I wasn't going to take my baby home.

All because I have a mental health impairment.

Im not saying it was right or wrong, I just wanted to share my story and the pressure, judgement and scrutiny that I was under.