Change of Circumstances PIP timeline

No, it isn't long to wait, in fact, I was quite surprised at the speed. I had further evidence to post but hadn't a clue where to send it, so I just sent it today where the original form went. It's just so hard to do anything,  to find the energy or the inclination to even post a letter, although my brother posted it for me.

I find myself also cancelling hospital appointments due to anxiety. I have so many appointments, due to arthritis, Meniere's disease, and mental health. I must have around 4 this month and I have set them all back, as I just can't do it due to my severe anxiety.  Sorry for the rant just finding it all overwhelming right now, have to take appointments one by one over a long period of time, as I just can't simply go to them without planning ahead, writing a plan down and coming to terms with that I will be attending a hospital appointment. 10 years or even 5 years ago, I could have managed but now I can't. I haven't been to see the doctor face to face for 2 years and the optician for 3 or more years, even though my eyesight is just dreadful with a lazy eye, astigmatism, macular degeneration or suspected and cataracts. My optician who I saw 3 years ago and who is retired told me that my eye sight is worse than his and he is 20 years older.

As for the assessment I know my brother wants to speak for me, in case my memory goes, as it tends to when I am anxious, I find it hard to think straight, most of the time when I take a phone call I start crying, as I find it again overwhelming.  

The last PIP assessment I had lasted two hours. I was by myself and I was asked the same questions in different ways. I answered honestly but found it hard to express my feelings, I remember feeling numb and zombie-like, probably due to my Mitrazipine. I remember the assessor asking do I drive? I said I had not driven for 8 years, he asked why not. I said because I don't have a car, which I haven't now for over 9 years. He asked if I informed the DVLA of my Menieres Disease, I said no as I haven't driven for 8 years and my driving licence is expired and would need to be renewed. At this point I hadn't realised that I should have informed the DVLA at that time about my Menieres Disease. I found it totally irrelevant about informing them with his line of questioning, as I didn't have a car and an out-of-date licence. I also remember him asking me twice which arm do I hold my phone in, I said my right hand, as I have shoulder tendonitis in my left arm and I also have tinnitus and hearing loss in my left ear. I guess he thought I should of said its hands free. I never use hands free as for me if I do it becomes distorted and I cant understand what they are saying to me. I feel rude to do that also. I guess I am old fashioned.

I guess I am saying I feel exhausted with the whole system, everyday is a struggle to do daily things and to go through the system as a number and fight to prove that I am not very well, I realise that they have to be thorough and I realise they have to sift out the genuine cases from the ones that aren't, I just wish they could come up with a better way for both the assessor and the patient/customer it is personally evasive and I blame the government for that.

Although I remember my mum telling me that when I was a baby and my brother was and she was divorced and needed to claim benefits the only time she ever did (not for a disability) they inspected her bedding to see if she had slept with anyone.  She never went on benefits again in her whole life. When she was terminally ill with less than 6 months to live, she was declined DLA twice and the reason why, is she said she could walk 50 yards or perhaps metres?  She was 4 stone and on morphine and fentanyl patches, she didn't put that she could walk that distance with opiates. Eventually she received the payment, but only because the Macmillian nurse intervened. I asked for a MR for her, which was declined as it was out of time, I wrote to Downing Street who said the same. They didn't care she had worked 40 years, she was only 56 when she passed, they didn't care she was terminally ill, it was all bureaucy and red tape.  Long winded story but what I am trying to convey and not very eloquently is that the system strips  us of our dignity, our right to autonomy or personal identity and at the end of the day we are just a number in a balance sheet.

By the way I am OK, just reflecting, so don't need any one to reach out to me, although Scope are caring and do treat everyone as a human being.

Albus_Scope said

Heya @shellbell20 I just wanted to reach out and say hi and to see how you're getting on with things now? If you need support or advice, please don't be afraid to ask.  

Hi well I am having a better day today, I take each day at a time. I finally found the courage to attend a scan I also spoke to the Rheumatoid specialist who seems to think that I might be suffering from something called Fibromyalgia as well.  Then I received a phone call about my blood tests that said my cholesterol was high and I needed to go on statins. I am only slight, and slim,  but I guess the lack of exercise because it's too painful for me and the fact I can't go out much with my anxiety isn't helping, it's a catch-22 situation.

I used to think nothing of walking 5 miles daily and listening to my music to block people out because of my anxiety, it helped with my MH, but now when I try to walk, I am in pain and then I have to cope with anxiety attacks and balance issues to mention a few things.  Since my blood test results, I have changed my diet completely, eating lots of fruit, cholesterol-lowering drinks, cholesterol-lowering spread, eating canned sardines and salmon, veg etc. I have stopped drinking completely, although I hear a glass of red wine is good for your cholesterol. 

 My brother dealt with my assessment they let him speak due to my severe anxiety and my anxiety was bad that morning, but on occasion when  I tried to speak  he spoke over me and that is when I realised I needed to gain some autonomy and control of my life and give him his freedom back, so I asked him not to come over as often and let me try to do some things for myself as people who have disabilities don't always have that family support but they manage

I have also decided to pay for a carer as I had a decision back, apparently, they have given me the enhanced rate for both components. I will be honest with you, it will make a difference to my life, but I would much rather have my old life back without pain, without losing balance, and without panic attacks to mention a few.  Hopefully, the pain meds might help with my mobility and the vestibular exercises might help my balance too and one day who knows I might be able to go out by myself for a walk at dawn when no one is around to help my cholesterol to help my MH. It would be nice to one day be well enough to drive myself, park at the beach early in the morning when no one is around and just sit there watching the seagulls and sea.