Memories and nightmares

Hi everyone,

I placed my nightmare regarding my PIP interrogation on the “PIP consultation news from the Campaigns team” on here, but to remind you if hadn’t seen it, it was a deeply nightmarish ordeal which I am still suffering flashbacks some 2 weeks later.

Now my memories.

The song that I am referring to is ‘Sound of Silence’ by Simon and Garfunkel.

Just heard a section of this song on the radio and it reminded me of laying on my bed on a sunny summers afternoon when I should have been busy during harvest. The lyrics seemed to ring true with me, I’ll explain.

It started with me waking up and finding I couldn’t see with my left eye, a visit to the hospital, various tests, with various diagnosis looked at and then back home feeling sorry for myself. Then a few hours go by and a phone call from the hospital telling me they think it is Multiple Sclerosis but would need an MRI scan to be certain. Now I didn’t really know what MS was so a lot of searching the web, I know too much about it now!

MRI scan booked and laying in the scanner I could see people speaking behind the glass but I couldn’t hear what they were saying, diagnosis confirmed and steroids prescribed. A few days and I was getting my own private firework display in my brain caused by the nerves in the brain short circuiting because of the damage to the myelin sheath, caused by the MS, when I was sleeping, it was a nightmare that I couldn’t escape from. I was in my own world of darkness with the odd nerves colliding in my brain which send bright flashes around in there. Then followed a few weeks of, basically, existing with bouts of pain around the eye socket and trying to cope with it, after all the hospital can cure it I was hoping. The vision it my blind eye was coming back thanks to the steroids but it was in black and white. Now that’s a weird thing to come to terms with, one eye in colour the other in black and white. At least the colour has returned a bit, it’s a washed out colour where reds look orange etc.

I’ve moved on a few years now and have come to terms with the fact I’ll never get any better know just hope I don’t get worse.
I learned a few things since I got MS, you know how good your family is, you know who your friends are and you never really appreciate things until you loose them.

So this song brings back memories that are not nice but it seems to fit in perfectly to my time of being diagnosed and coming through the other end, well this far at least.


I can’t find your pip nightmare, I’d like to read it.

I’d like to read it too.

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I’ll try and get a link to it, I tried copy/paste but was able to copy, I’ll try and get it for you…

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I can’t find it anywhere, it must be somewhere but I just can’t find it.

Anyway I’ll give you a rough idea what I had posted.

My wife and me and gone to the place in Northampton where the assessments were being done. To start with the assessor I was supposed to see had a problem with his computer so we had to wait for a different assessor to ‘do’ me. He had the type of eyes that when staring at people you could see the whites surrounding hie pupils, it was like a fried egg with the white around the yolk and very intimidating. It was if he was trying to drill right into my brain, which has enough problems to start with. He started asking questions and I answered then he said AND, again AND it was like an interrogation. I think he wanted me to feel guilty of daring to try and claim PIP despite having DLA and IB at the highest level so called indefinitely. My mouth was dry so my wife gave me a bottle of water to help me. The questions kept coming with the AND word being drilled into me all the time. He even threatened to get up and go at one stage when I was struggling with answers. He wanted to know what medications I was on, my memory is not too good so my wife started to tell him but he told her not to say anything. It went on and on, my mouth getting drier and drier, my memory completely failing under the pressure he was putting me under. My wife asked him what profession he was in, which was a physio. What qualifies him to assess a person with MS. The nightmare continued and continued, I just wanted to get out of there. I remember one of his last questions was “have you ever felt suicidal?” I said I hadn’t but I do now. We left and I was shaking, what a way to treat someone with a problem like MS, or anybody for that mater.

I’m still having flashbacks now and am having trouble sleeping, every time I close my eyes I can see his eyes still drilling into my brain. I haven’t heard what the results will be and its making me depressed, if I don’t get PIP I don’t know what I’ll do, my doctor had sent a letter saying that there was no way I would be able to work and if I don’t get PIP the whole of the surgery are behind me and will appeal.

Basically it was a nightmare, I wish I had taken something so I could have a voice recording of it. I had no idea what he was typing on his laptop he might have been typing anything and not even what my answers were. So if I have to get another assessment I would always ask to record it to make sure they were being honest and to have some security.

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Little Hitler! AND!..I will record it if I get called.