PIP assessment

Yesterday’s post did not mention my PIP assessment I had, as I did not want to drag away from what I was feeling that night in the previous post. It was a long day for me yesterday, as I was up at 5.45am. I was going to get up at 6am, but when I woke up then, I thought I’d get up. I was surprised I wasn’t tired with lack of sleep, but obviously, by the end of the night, I was knackered and drained by the time of the work scenario.
I was up early, as I had to compensate setting out earlier than normal as mum was coming with me this time. So I wasn’t alone.
When we arrived in Nottingham and literally around the corner from the place of where the assessment would take hold, we had a hot drink and a little something to eat, till it was nearer to time for my appointment. I did not lose my way this time and for going the right way this time, I could see there was more options to visit till appointment time. The cafe we had chosen was Tuckers, which was opposite the Kitty Cafe. The staff were nice and welcoming and we actually went back there after my assessment for lunch, before making our way home.

As you will know, I have been worried about the PIP assessment due to not feeling that the form suits people with a hearing loss. Also from what I have read and heard from people affected directly with regards to it, in which people who are entitled, lose it. On top of that, as you know, the first time it was cancelled and I did not know until I arrived there, in which I found it was them who tried to phone me, even though my PIP form clearly stated to only use my mobile number for texting, as deaf. They also did not book my Lipspeaker. So I had every right to feel concerned about this appointment.

After signing myself in and meeting my Lipspeaker, the first call was the toilet for me, then we made our way downstairs to wait in a private waiting room outside the room where I would be assessed. While waiting for my turn to be assessed, it was a chat with my Lipspeaker to get to know one another with not meeting her before and for her to know how I would like her to help me, finding out if I knew any sign and if I wanted her to use that too.

The assessment

When it was time to go in the room, I pointed to the chair for my mum to sit at and I sat next to her, facing my Lipspeaker and the woman who was to be assessing me. After the formalities were out-of-the-way, in which I decided I wanted to see if I could lipread and hear the assessor first and if not, then I would look at my Lipspeaker, for her to repeat what she had said.
I found the assessor had a tone of voice that was right for me, but there were times after trying to lipread her for a while that I did end up using the Lipspeaker to get it repeated. When my mum spoke to add her part, I relied on the Lipspeaker to tell me what she had said every time, as she was sat a little further back from me and I can’t lipread sideways on, on top that I don’t hear my mum as well now.
Some questions were a repeat that were already on the PIP form and some were new. This gave me a chance to add, or amend anything by doing this. Every time the assessor spoke to me, she always looked at me directly so I could see her face. She never covered it and when she asked some certain questions about my hearing loss, I felt with this and making sure she always looked at me when she spoke that she had awareness. I have read how some assessors have not been helpful and done tests that were not acceptable towards deaf, but I have never received anything in the assessment room that was not acceptable. She only asked questions, nothing else.
My assessment was under an hour and although it was relaxing in the room, I wasn’t fully relaxed because of questions I would know that would possibly come, when it came to talking about my depression and anxiety. I thought more questions were going to be asked than that with regards to my depression, so just when I thought I may not hold it  together on the subject she asked me, it was on to a different topic.
I did have tears in my eyes after a particular question about how I feel and why. I don’t know if it may have been obvious to her. It’s not nice saying how you truly feel in front of your own mum, that you wish you were dead and that I have thought these thoughts, I just not acted on them. I just instead wished that when I went to bed to sleep at night, that I did not wake up the next day.

My opinions after my own PIP assessment

As I have mentioned, staff are pleasant and so is the assessor. The environment was relaxing and welcoming, even though I was not relaxed. The assessor always looked at me when she asked me questions and never ever covered here face. She even used some sign herself when she spoke, which was nice. I have the confidence that what I said, is down on those notes, but because of how I feel about the PIP application process, I still wonder whether I will get it. The waiting will be long, because of the back log, so it will be many weeks before I know anything, so until then my DLA continues, till they make their mind up at DPW.

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The way I am

Anxiety has been there for most of my life because of never feeling like I fit in, or belong anywhere. This feeling, along with being made to feel different started when I was in Junior School. No one wanted me on their team, but obviously I would have to end up on someones team. Even when I shown how good I was at non-stop cricket one time, which they were stunned, it did not change their views. I still was not wanted. This carried on all through Comprehensive School, but in addition to bullying which was mostly verbal. I only experienced physical a few times to start with, which was just pushing.
Through working life, thankfully not every job I did not feel alone, or not belong. There has only been one area where I was judged before they knew me and where I work currently, there has been (or probably still is) judging when they don’t really know me, because now I don’t speak unless I really have to, due to past issues at work with bullying and other things. But this time I don’t care if they judge. It’s their problem, not mine. The few that know me, only know me because I know they won’t shove it back in my face later, otherwise I keep myself to myself, which pisses off the others, because they have nothing to gossip about.
Through the lovely people I have met along the way personally, they are in my life because they mean something to me.
New friends I made through a place I stopped volunteering at, because no opportunities happened in the months I was there, I try to meet up with them, when I can. A lovely group who I feel comfortable with and who are patient with me because of my hearing loss. But underneath, I still have a little anxiety at times, because that just seems to be me. I am also tired after and can’t wait to go home to re-charge, because of the effort it requires me to lipread. While I am there, when conversation is in full swing, unless someone near to me either side starts a conversation separately with me, then I stay quiet, because I do not know what is going on. I cannot follow group conversations at all.

I will try to travel somewhere new, but just because I do it, does not mean I am always anxiety free. Sometimes anxiety likes to pay a visit and I don’t know why I am having that moment.
If it involves more than two buses to somewhere new and I do not know where to get off, I simply can’t do it, as anxiety-wise, it’s too much.

If I go somewhere that involves a crowd, I get anxiety because of not knowing who they are and I can feel claustrophobic, depending on the crowd and the situation. Putting myself in the same situation, does not make it go away. It never gets any easier.

People have said to me that I look confident, when I have said underneath I don’t feel confident, or have anxiety.

If I am with someone I know, but someone comes up to us because they know the person I am with, I will stand back and let them talk. I tend to find I am quiet because I don’t know them, because I worry about possible communication difficulties I may have. This is just the way I am.

If a random person came up to me in the street, anxiety will be there, because again, I will worry about the communication difficulties I could have, because of communication difficulties I know I have.

You will not find me in a swimming pool, because to do so, I would need to remove my hearing aids. I will not be around people without my hearing aids, because of communication difficulties I would have and my anxiety would be high.

I could easily isolate myself if I allowed, so I don’t have to worry about communication difficulties.
To be ME and remove my hearing aids.
It’s so easy being on my own, to be me and just relax.
To be me without the worry of the communication difficulties, or the worry of being judged before you they fully know me.
To be anxiety-free.

How lovely it would be, to be without anxiety, as it would make my life so much easier. The same if I wasn’t deaf. But that’s the way I am.

For the record, I hate my anxiety and my hearing loss. But I know they will never go away, as much as I want them to.

Why I am back early from my blogging break

I have enjoyed my blogging break, but I have also partly missed it. While way, I have had a lot of ‘me time,’ just doing what I want to do, on my own. I have also enjoyed spending time with a couple of family members on days I have seen them.

I have some stressful times as you know, and while I have been away from blogging I have had some ups and downs. But most of these have been ups, as I shared in my first post back from my blogging break.
I have dealt with these ups and downs in ways that are suitable for me, to get it out of my system, which two of them being doodles and sharpie drawings.

I came back earlier to blogging than planned because I wanted a distraction from earlier that day. For two hours, I had to talk a lot about negative stuff with someone from Welfare Rights who was helping me with my PIP application. Like many others who are or were on DLA originally, regardless if you had it for life, we all have to go onto PIP. But if you want it, you have to apply for it. Luckily the person who is helping me with my PIP is the same person who helped me with my DLA. But regardless I am having help with filling it in, it does not make the process any easier.
Talking about all the negativity of your disability, so it is filled in properly on the form to get across to them looking at it on how your disability affects you is hard work. I cried at one point while talking about the negative effects of my hearing loss, saying how easier just being on my own can be, so I can just be me and take my hearing aids out.  Comparing to before when I applied for DLA and now for the PIP, there is a lot more down on paper. I was there for two hours. To say the PIP form is thinner than the DLA form I remember, there is still a lot of writing had to go into it.

Originally my DLA was just for my hearing loss, (although other things were mentioned, but not important then.) Now I have to talk about my depression and anxiety.

Although I left the place where I met up with Welfare Rights person better than during my session, I did start to feel tearful again while eating lunch in town. A place where I was going to have originally lunch in was very busy, so I went to another cafe very near by. I felt a little edgy where I choose to sit, with the cafe being in the centre of the shopping centre and choosing to sit on a seat around the edge. I should have really sat somewhere more in the middle, then I may have felt less edgy.
Before going home, I thought I’d pop into HMV and buy a couple of CD’s to hopefully cheer me up a bit. I bought Ed Sheeran, ‘Divide’ and Anastacia, ‘Ultimate Collection.’
It took towards the evening though, when I was working with my colleague, before my mood picked up much better.

Book review: ‘A Student’s Guide to the Deaf Experience,’ by Michelle Jay.

For those that have known me for some time, either personally, or through my previous blog, you will know I had a good experience of participating in this book. This is the only thing, deaf-related personally to me, that I will share here on, ‘My Wellbeing and Learning Journey.’
      This book review I originally shared on my previous blog, which has been edited slightly to reflect the time of how long ago I did this.
Front cover of A Student's Guide to the Deaf Experience

“A Student’s Guide to the Deaf Experience,” by Michelle Jay, is a mixture of  stories from deaf and hard of hearing people.

      This book is also something that I also took part in myself, after being asked by Michelle if I would like to take part. I share my story in this book on page 111, called ‘The Highs and Lows.’ This was just over 3 years ago, but it doesn’t feel it and it was a positive experience I am proud of.
      It was also nice to see when reading this book, of finding out that some of my friends submitted their stories. As well as reading other familiar, or new blogger’s too. I had no idea my best friend Sarah, from Speak Up Librarian had taken part, till this book was published. So it was nice seeing and reading her story in there too.
This book was created to equip ASL students, but this book is a great read for anyone.
      My Mum has read this book and bought another for her Sister. She has also shown my story to her friends, as any proud Mum would. Some of them who know me well, did not realise to the extent how my hearing loss affected me, till they read my story.

This book is a great deaf awareness book for all and is available at Amazon.co.uk.