I am a survivor of extremely severe ritualistic childhood abuse and sadistic systematic torture. Without God's intervention in my life I wouldn't be here - NOW is the time for me to tell MY story by speaking the TRUTH about MY life. I will be silenced no more! On this blog I share MY life, MY healing journey; helpful quotes/stuff I come across and MY thoughts along the way. The more I speak out the more liberated I am from the shame and trauma of the abuse. My broken wings are gradually being restored. This blog has helped me begin to get my voice back and documents the journey God is taking me on to heal me from the trauma and damage caused by that most appalling abuse.

Tuesday, 22 December 2015

MASSAGE

I had my Christmas massage yesterday which we always try to make special.

But this time it was going to be different because my body's all over pain levels have been extremely high for weeks with all the stress I've been going through and I am aware that my whole body feels very tight.

Normally my body relaxes when Caroline gets in to the massage but yesterday it wouldn't or couldn't. 

I was flinching when she tried anything more than just a gentle surface massage, even on my back. So she eventually gave up and just worked on my shoulders and neck instead. 

That is the first time in over 3-years of having massage with Caroline that I've not been able to physically cope with the massage. In her words, "there is so much stress in your body and your tissues that you just didn't have it in you for a proper massage today, physically or emotionally".

But the good thing which came from the massage I only realised later in the day.

I realised that just by having the massage I felt human again. I also realised I've not felt human for a long time. 

Instead I have felt instead like a cog in the wheel of a vast system which is treating everyone who comes in to contact with it in cruel, nasty, inhumane ways without the means to meet even the most basic human needs through no fault of my own. That has felt really awful and been really disempowering!

So I realised that hey, it's good to feel human again. It's good to be able to feel my body, feel my skin, notice my breathing all over again, almost as if I've never felt any of those things about myself before.

It is something I need to hold on to that there is more to me than all the stress and how that stress has impacted my life, my mind, my emotions and my body.

I am alive, I am human, I have feelings and I have needs.

Sunday, 20 December 2015

CHRISTMAS

I am looking forward to going away for Christmas in a couple of days time. I am due to leave during the small hours of Wednesday morning for the long drag over to Dover for the ferry.

I am having a complete change this year. I am not going to the Alps I am going to Belgium. And I am going on a specialist holiday for solo travellers which means my travel is taken care of from door to door. I don't have to worry about expensive taxis.

I will be staying in a hotel near Mons, going in to Brussels on Christmas Eve to explore the Christmas markets, discover the Manneken Pis and enjoy what I believe is amazing architecture. On Christmas Day we have a quiet morning at the hotel then go to Mouscron in the afternoon to visit their Christmas market. On Boxing Day we will be visiting Dinant. Then the following day I imagine we shall visit a Belgian Chocolate factory shop on the way to Calais on the way home.

The weather looks like it will be mild and mostly dry, which makes packing relatively straightforward.

I'm looking forward to speaking French, wearing my Christmas ear-rings, my new santa hat,a new Christmas jumper and to enjoying Christmas, Belgium style!

It's going to be something very different for Christmas for me. And most of all, I'm glad I do not have to face oodles of travelling which going to the Alps entails. It should be a nice gentle time, which is probably just what the Doctor would have ordered for me.

SINCE THE ATOS ASSESSMENT

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.

MY BRUSH WITH AN ATOS ASSESSOR

It is very hard to find words for what's taken over my life since I last posted. I've had immense trauma coping with the brutal, inhumane degrading system of reassessment for disability benefits the government does not want you to have. The sheer nastiness of the way it is carried out has been awful, especially with my history of major trauma. The uncertainty and fear created severely affected my physical and mental health making me extremely ill.

PIP is the most badly named disability benefit possibly, it stands for Personal Independence Payment. But the way it is being administered is actually taking away the independence of severely disabled people all over the UK. The government's stated objective for bringing PIP was to “safe money by forcing “20-25% of disabled people off disability benefit”, while stating at the same time that “genuinely sick and disabled people had nothing to fear.” That was a total lie. And the way they made it so hard for disabled people to qualify – by making the criteria extremely hard to qualify for. The whole reason for it's existence is totally obscene.

During the 2-years which led up to my PIP process beginning I heard and read what has been happening as it has rolled out across the country. I've read all the horror stories of people being left destitute despite being severely disabled, many terminally ill, others losing their mobility cars despite needing them and being legally entitled to the benefit. I knew the ATOS assessments were being fixed against claimants, with assessors writing down lies and often writing something totally different to what the claimant actually said. I knew that people were having their disability benefits taken away from them and being forced to appeal in a process which was taking months and often a couple of years to resolve.

I just kept hoping I might have a kinder experience of it. However, that was not to be!

My experience of PIP began in February when I received a letter telling me that DLA had been abolished and I would be invited to apply for PIP. I got a letter in July telling me my DLA was ending and I would be getting a PIP form which arrived during August with an absolutely ridiculous and impossible to meet deadline for getting it back to them. My mental health Care Co-Ordinator managed to negotiate a 2-week extension to the deadline. The whole of the next 3-weeks was taken over by the 40-page form which I filled out giving maximum information and additional information that there was nowhere on the form for. I returned the form with loads of robust supporting evidence to try to make it as hard possible for them to refuse my claim.

At the end of September I received a letter requiring me to go to an ATOS face-to-face assessment with less than a week's notice which was totally impossible to do. Again my Care Co-Ordinator managed to negotiate with the DWP to give me a new date with a proper amount of notice. Debbie also negotiated where the assessment was to take place because it is impossible for me to travel to their centre in Exeter. We both wanted it to take place at St. John's Court, my Care Co-Ordinator has attended previous ATOS assessments with clients at St. John's Court. However, they were adamant that it take place at their centre or in my own home and they were very nasty and bullying in how they stated it.

So I was left with no option but to have it in my own home, which I didn't really want and which was disempowering.

My home is my safe space, I am very careful what and whom I allow in to it. To have to have an ATOS assessor in my safe space treating me like a piece of shit was not something I wanted to allow in to my home, my safe space, but the DWP made it impossible for me to have my wish for it to be elsewhere so I felt very powerless.

I had nearly 3-weeks notice of the new date, which was 5th November 2015. I needed all that time to get my head and emotions around having the assessment at home but I could not know just how I would react to allowing the assessor in, knowing I had no choice and did not want her there.

My Care Co-Ordinator was present at the assessment as there was no way I was having the assessor in my safe space without a witness present and as things turned out I was very glad Debbie was there and witnessed all that went on.

The assessor showed up at my front door saying in the coldest possible tones “I am looking for [my name]”. I don't know what I said in response but with massive foreboding demanded I.D. from her which she took great exception to. She was not happy that I asked her for I.D. which I had every entitlement to request. To be honest, if you are showing up at people's homes you should have your I.D. round your neck or in your hand. She did neither and had to fish around in her bag for it, she flashed it so quick at me that I was unable to see what it said except I saw the ATOS logo on it.

I let her in, all the while she was complaining on and on to me and to Debbie about me asking her for I.D. I felt like telling her to shut the f*** up, that I was totally entitled to ask a stranger showing up at my door for I.D. and that I have to take my safety and security extremely seriously, but I knew she would not get it.

She walked in to my living room and saw Debbie sat there. She spat out “who is this?” I told her who she was. The assessor was obviously extremely unhappy to find I was not alone. At this point I was very glad I was not alone, I dread to think what would have happened had I been alone. I was disgusted at the disgraceful way she spoke to Debbie. It was obvious she had come with an agenda and we had upset that agenda, she was extremely taken aback and unhappy although the letter states that you are encouraged to have someone with you at the assessment. So the assessor had no grounds to complain about Debbie being there.

The assessor sat with her back to Debbie, hunched over a notepad, hardly making eye contact with me throughout the assessment.

She was very patronising and condescending, talking to me like I was a child. She posed questions in ways which prevented answers beyond simple yes/no responses which was woefully inadequate and frustrating. She did not ask questions in a way which allowed anything other than yes/no responses. I was not given space to expand or quantify beyond simple yes/no answers to explain how things really affect my day to day life. I was not asked what a typical day is like. I was not asked what the days I struggle to get out of bed are really like. I was not asked how I cope with everyday tasks such as cleaning or housework. She did not question me about all my health conditions as she said at the outset she would. In particular she did not ask me about my migraines and the enormous impairment they cause to daily life.

She refused to discuss my Complex PTSD saying “we won't talk about that as I don't want to upset you, which was not okay. Complex PTSD has a massive impact on my ability to cope from day to day. I would NOT have been upset if she had attempted to discuss it in an adult way rather than a condescending making assumptions way. It was a missed opportunity for her to gain insight into the catastrophic impact Complex PTSD has on my life. By ignoring my Complex PTSD, Dissociative Disorder, Personality Disorder and other aspects of my mental health she gained no understanding of how massively impaired my daily life is by the complexity of my mental ill health. She asked briefly about my depression but in a way which limited what I could say. Both me and Debbie mentioned self-harm and my daily battle with suicidal thoughts. But the assessor was obviously out of her depth at that point of the discussion and ignored everything we said about my mental health.

She asked if I am under an M.E. Clinic or specialist. I stated I am not as they only deal with short term cases, however it was not possible for me to mention that the clinic contact me annually to check on me.

I was asked if, on the days I struggle to get out of bed, I wash my hands and face? She asked several times, despite me saying NO each time. She was not willing to accept NO and bullied me until I changed my answer to YES to get her to move on. Her bullying was unnecessary and totally inappropriate. Debbie witnessed that and remains very angry about it.

It was at that point that I dissociated because of her bullying and began to shut down. Debbie told me afterwards that the “Fi” I became was not a “Fi” she knew or recognised. She told me that I gave the assessor less and less information as I gradually shut down from the shock of how bullying the assessor was.

I was asked if I am able to chop up food – I stated I cannot chop up food because of pain and loss of feeling in my fingers. She then said “but you can cut up your food to eat can't you?”. A simple yes or no did not suffice as I have to ensure I eat food which needs minimum cutting up because of pain and numbness in my fingers. It was not possible to explain the complex issues I have around food and eating nor that I have days I scarcely eat at all. She asked “but outside of the M.E. you know how to cook don't you?” and was stunned when I said “NO”

I was asked if I can text – again yes or no did not suffice. It was not possible to say I only do essential texts because as soon as I start texting the pain and numbness in my fingers makes it impossible to send anything but a very short message.

I was asked what time I go to bed at night but not asked what happens once I get to bed or how easily I fall to sleep. It can take 2-4 hours to fall asleep. I was not asked what my sleep is like or if it is disrupted. I was not asked what time I get up the next day. If she had asked any of those questions it would have been obvious to her just how restricted my life is by constant debilitating fatigue and how much of my life I actually spend in bed.

I knew as soon as she asked me what time I go to bed at night that she was totally clueless about M.E. It was such a totally inappropriate and stupid question to ask.

She asked where I catch a bus to town from. I showed her the bus stop outside my house. She asked if I walk to appointments seeking a black and white yes or no but my mobility issues are more complex than that. It was not possible to say sometimes I walk but slowly in constant pain and have to allow extra time. It was not possible to say if I go out I am back in bed as soon as I return home because walking, even just down the road to the shops or to St John's Court, has completely done me in. It was not possible to say I catch the bus up the road so I only have a couple minutes walk up the path to St John's Court and walk home after as I know I am coming back to bed. It was not possible to say I am in bed the next day because I went out, even for just a few minutes or because I walked, even just a very short distance because walking exhausts me and several days a week I struggle to get out of bed and am not mobile in my own flat nor able to make it out to my back patio to take out rubbish or recycling. She did not ask me how I manage when I have to go into town.

She asked me when I am fatigued and when I am in pain. I told her I am always fatigued and always in pain – she appeared stunned by those answers and asked “really?” to both answers. I was shocked she understood so little about M.E. that she thought there could be times when I am not fatigued or not in pain. There is no time, no day, no moment when I am not fatigued, exhausted or in pain. There are days I can do nothing because my entire body hurts. Everything in my life is carefully arranged because of the limitations from M.E. Everything I do is done through a haze of constant debilitating exhaustion and pain.

It was not possible for me to say I tend mostly to just go out to appointments due to having massive social phobia. I often find it too distressing and triggering to be out of my house as I am scared to be around people, cannot cope being around men, cannot cope with unexpected events, unfamiliar places, unfamiliar people or last minute changes to plans and so have extremely limited social interaction outside of appointments with health professionals.

As the assessment went on I gradually shut down until I told the assessor I was exhausted and just wanted to go to bed.

At the end of the assessment I was left severely dissociated, distressed and deeply traumatised. It caused a severe escalation of my depression, self harm and suicidality. I was left feeling terrified I will lose the disability benefits without which I cannot afford to live and cope with my disabilities and so was suicidal.

All of which was totally unnecessary and need not have been if the assessment been carried out in a careful humane way as we requested on my form rather than the extremely poor and damaging standard of assessment it turned out to be. It is regrettable the assessor did not heed our request.