I was in bed for 5-days following the assessment. I was suicidal, I self-harmed seriously, it was one of those times when self-harm, in this case cutting, was one step back from suicide and kept me alive. I could not get thoughts of death off my mind, they were there constantly.
During the assessment I developed extreme head pain and horrific pain shooting through my right eye, I thought I was going to have a brain haemorrhage, it was so bad. After a few days of this I spoke to the Dr on the phone because none of my medication was touching it. She said she thought it was a severe stress headache and decided to treat it by increasing my Amitryptiline by one dose, Amitryptiline widens your blood vessels and is a preventer, it is also a tricyclic antidepressant which works well alongside my other antidepressant Mirtazapine. It took about 6-days for the full affect to kick in but it did the job. I went from not being able to touch my right eye, from being blinded in my right eye to gradually over a few days I could touch the eye and my sight gradually returned too. One week after changing the dose the headache became to a dull ache and remains a dull ache every day. But I can cope with a dull ache. It also means I can notice when a migraine is starting and treat accordingly.
I've now had that headache for over 6-weeks. I saw the Dr the other day and she has agreed to keep me on this level of medication until the end of January, when hopefully my financial situation will begin to be taken care of and the pressure on me will ease. My physical pain levels have also been appalling since the assessment. The stress has come out in my body in all sorts of ways, but the escalation of my all over physical pain has made everything so much harder. My sleep has massively impacted. I've found it very hard to get off to sleep and I've found it very hard to stay asleep which has compounded the fatigue and exhaustion to almost un-liveable-at levels.
On 15th November I received a letter from East Devon District Council who handle my housing benefit and council tax reduction informing me that my DLA had been stopped and I was now in receipt of PIP standard rate daily living, my mobility had been stripped away completely. I could not believe what I was reading. I could not believe that the DWP could inform the council ahead of informing the claimant, I was absolutely disgusted by that. It was obviously a proforma letter so it is obvious this happens all the time. The speed of that decision made it abundantly clear that the DWP waited for the report for the ATOS assessor, took her report as the basis for their decision and ignored everything else. The DWP also did not ask for further medical evidence from anyone named on my form which makes their decision extremely flawed.
It took the DWP until 25th November to get around to informing me of their decision, their reasoning behind it and what points I had been rewarded for what. It was very triggering reading over and over “you report problems doing ….. but I say you have no difficulty…. [or similar words] and there is no evidence otherwise….” Which was a lie. It was very difficult coping with that kind of thing because it was so reminiscent of how abusers work-- “you say this but I say this is [about you, about what is going on etc] and my version of events is the right one”. What you have to say has no value or influence on me at all, because it is my interpretation which is the only thing which counts.” That is a horrible dynamic which the DWP used over and over in their reasoning and it ripped me apart with trauma.
It was obvious they had no understanding of trauma or of M.E. and had disregarded everything I wrote on my form. They disregarded the supporting evidence too. None of what I read rang true because it which was plainly based upon a flawed report from a bullying ATOS assessor. It was obvious they had totally ignored all the mental health issues I have. It was a total shambles. As for Debbie, well she read it, put it down and said very slowly “what a load of total shite, but at least we have loads about which to take them on. What I read in this report is not the 'Fi' I know, they have not got you at all”.
The loss of two-thirds of my income was instant which was catastrophic for my finances. My income had been dropped by £85 a week - £340 a month - which meant my finances were instantly in free fall. My bus pass went immediately which was a huge blow on top.
The stress, massive financial loss and uncertainty of knowing I may have to face an appeal tribunal at some stage to prove how ill I am, to get the disability benefit which I, and everyone who knows me, would agree I am legally entitled to. The instant timescale of financial loss followed by an indefinite timescale for how long the appeal process may take makes it very hard and is absolutely horrible.
The DWP are very clever at putting very difficult to achieve timescales on claimants but give themselves no timescales at all!
Without family to fall back on, coping with such huge loss brought into stark focus the reality of my vulnerability. I live every day with that knowledge and that vulnerability but don't focus on it because if I did, I would not be able to function at all. So having that brought into such sharp focus has had a massive destructive impact upon my life and my ability to keep going and face each day. This is the longest period of my adult life that I have been constantly suicidal, with thoughts about my death and my funeral there at the front of my mind 24/7. There is a very strong survivor child part within me who has taken over functioning many times during the last 6-weeks or so. She is exhausting to be around but without her I would not still be alive. Without self-harm I would not still be alive. And without any really good coping strategy – distraction – I also would not still be alive. Without the professionals around me and my friends I would not still be here.
I have been astounded and overwhelmed by the response from everybody – it's been the same, give or take the odd word - “no this is not fair, you don't deserve this, after all you've been through, to have to deal with this kind of stress.” Even my massage therapist said, with tears in her eyes “this is not on, after all you've been through to be treated like this, if you with all your disabilities cannot qualify for PIP then who possibly can?”
I spent the remainder of November and the first half of December preparing a formal letter requesting a Mandatory Reconsideration of the decision – this is the first step of the appeal process. It was incredibly stressful having to reiterate what I had already told the DWP but to make sure I do it in such a way that the information is presented to them in a totally different way. It was also very stressful having to negotiate with the professionals involved in my care to provide supporting documentation evidencing and backing up everything I was saying in my own letter and all within a very tight timescale. The paperwork went off last Wednesday and I know it has arrived safely well before the date given beyond which no appeal could be considered.
I have been comforted by the overwhelming support I have received from everybody, whether that has been emotional support, food boxes or financial contributions to help me cope until I am able to get help to sort out the financial mess this has put me in. And somehow it has given me the strength to keep going.
It has also been comforting to know this is happening to people all over the country. As I was preparing my Mandatory Reconsideration – C.A.B released figures showing they have in the region of 300,000 cases nationwide concerning PIP. They are absolutely swamped by the volume of people needing help with perverse PIP decisions. The C.A.B.'s position is that the DWP are not getting it right at initial assessment stage, they are not getting their decisions right, probably because they are relying on ATOS assessors rather than information from claimants, GP's, surgeons, mental health workers, physios and so on.
My G.P. told me that they are dealing with this every day, that they are fed up with the DWP ignoring their evidence or not even asking for it in the first place.
I have been referred to an organisation for help with my finances and then once that situation has been stabilised, more general budgeting and financial advice. I was referred to them in November with the request that I be seen in 1-2 weeks maximum. Unfortunately, they, just like the C.A.B. are overwhelmed with referrals and requests for help. However, I was informed a couple of days ago that I do now have a named worker, so it looks as though early in January that support is likely to kick in.
I don't expect to hear anything from the DWP until the middle of January. I am hoping common sense will prevail and my Mandatory Reconsideration will be allowed. I do not want to have to face what could be a long drawn out damaging appeal process and I should not have to face that. But the DWP are a rogue department with no accountability for their actions so I will just have to wait and see, hope and pray and keep my fingers and toes crossed that they will realise the errors in their original decision and do the right thing!
In the meantime I am absolutely exhausted, mentally, emotionally and physically. I am totally drained. I have nothing left. The last couple of months have taken me to the brink and over a few times. And still my body does not want to rest. It is obviously going to take a while for those stress hormones in my system to calm down, hopefully my holiday over Christmas will help that process.