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We want to hear from you: please tell us about your experience of the online community.

Hey,

BritPuddles

Hey all

I am a dyslexic, autistic, person with depression, ptsd, asthma and spinal problems. I am currently going through the stress of the PIP appeal process and love my guinea pigs.

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BritPuddles

My guinea pigs are Chocolate and Bright Eyes. They are the light of my life and I can honestly say they saved my life by coming into it.

Jo_2022

Hey @BritPuddles!

Thank you for joining the community. All the very best of luck for the PIP Appeal. Take care

You might find these links useful:

https://www.scope.org.uk/advice-and-support/challenging-PIP-or-other-benefits-decisions/

https://forum.scope.org.uk/categories/learning-disabilities-and-autism

https://forum.scope.org.uk/categories/mental-health-issues

https://forum.scope.org.uk/categories/chronicpain

BritPuddles

@Jo_2022 Thank you so much for sharing. I will have a look at them tomorrow

Ross_Alumni

Hello and welcome to the community @BritPuddles

How are you today? Thank you for introducing yourself and telling us about your lovely guinea pigs, it's clear how much they mean to you and that's great. I also love the names

This is a very supportive and welcoming community as I hope you have already seen, and fingers crossed that the links shared above by Jo have been helpful for you. You might also find the virtual coffee lounge so be a good page to visit, it is a category in which we play games and talk about all sorts of subjects from food to films

Do you mind me asking whether you receive all the support you need to manage your conditions? And how is your mental health at the moment?

I hope your PIP appeal is going well, I realise that it can be a stressful time but hopefully being part of the community can help to ease that. There are several members on here who have experience of the appeals process so you certainly aren't alone.

bg844

Hello and welcome from me too

BritPuddles

@Ross_Scope To be honest, no on the managing my conditions. I have to battle my GP surgery all the way. It makes things very difficult. Some of the things I could tell you about them would make your toes curl.

Mental health wise I am struggling but holding on. My guinea pigs are the reason why I hold on. When I say they saved my life I dont mean it figuratively. I had to shield myself during the worst of the pandemic because again dodgy gps and my landlord allowed me to get them after the first lockdown. So, I got them and I honestly dont know where I would have been if I hadnt. So I hold on for them.

BritPuddles

@bg844 Thank you for the welcome

L_Volunteer

A warm welcome from me too @BritPuddles. It is great to see you have joined us. Thanks for telling us a little more about what is going on for you at the moment.

It sounds difficult that you are struggling mentally. We are proud of you for still holding on, it takes strength to keep holding on. Would you like to tell us a little more about how you are currently feeling?

We are here for you. I am really pleased to hear your guinea pigs really help you. Do they have names? - I would be really interested to hear a little more about them!

You don't have to face this, or anything else, alone if you don't want to. Please keep us in the loop, we are all here for you

BritPuddles

L_Volunteer said:

A warm welcome from me too @BritPuddles. It is great to see you have joined us. Thanks for telling us a little more about what is going on for you at the moment.

It sounds difficult that you are struggling mentally. We are proud of you for still holding on, it takes strength to keep holding on. Would you like to tell us a little more about how you are currently feeling?

We are here for you. I am really pleased to hear your guinea pigs really help you. Do they have names? - I would be really interested to hear a little more about them!

You don't have to face this, or anything else, alone if you don't want to. Please keep us in the loop, we are all here for you

Hi, Thank you for your kind words. My guinea pigs are named Chocolate and Bright Eyes. Chocolate because she has light brown and black markings. She was the first one I saw at Pets at Home and immediately thought "When I get you home I need to get a caramel chocolate bar". I knew she had to be mind. Bright Eyes has very bright red eyes. She is my nervous nelly. She will stay with meall the time. Seh will venture but the second something spooks her, back to mummy she goes.

Mentally I have been struggling with my PTSD. Been really triggered since October. Only just got therapy started again. My PTSD is from the Grenfell Tower fire. I was one of the people who helped at the pop up centers on the day.

I just wish everything was not so much of a fight. Why am I struggling to get decent medical care - why have I had to fight tooth and nails to get help in my home etc. all these things continue to anger me but all I can do is move forward. I live alone and the small amount of support I do get I am paying for out of my salary instead of my PIP so I have very little money to do anything else with.

it shouldnt be like this. if someone with disabilities wants to work and can work wqith the aid of 1 benefit and adjustments that the workplace put in why is it so hard

Tori_Scope

I can only imagine how traumatic that must have been, @BritPuddles. I'm glad that you've joined the community, and felt able to share that with us. It's been great to see you get involved on other threads, too.

Getting the right help can certainly be a challenge. Have the therapy sessions been helping you to manage your PTSD symptoms?

I've enjoyed hearing about your guinea pigs! I bet they're adorable. I'm a fan of capybaras, which are like giant guinea pigs. If you haven't heard of them before, I'd recommend looking them up

L_Volunteer

Hi @BritPuddles. Thanks for your response.

It was great to hear more about Chocolate and Bright Eyes. What great names too! It sounds like they both fit their names perfectly.

It sounds really difficult that you have been struggling with PTSD. I can understand how being affected by the Grenfell Tower fire may have lead to this. It sounds really frightening.

I am hearing your PTSD has been really triggered since October. Would you like to talk to us about what triggered your PTSD in October? We are here for you if you would like to share more with us.

I agree with you, you shouldn’t have to fight tooth and nails to get the help you need and deserve. It sounds really frustrating and disappointing. Have you applied for a social care needs assessment? You can find more information about this here if you wish.

You are really strong for still trying to move forwards despite everything you have experienced and continue to experience. Is wanting to work but not being able to access the benefits and adjustments that the workplace put in something you have experienced?

It sounds really positive that you have got therapy started again. How is this going for you? I am wishing you all the best of luck with your therapy sessions.

Please feel free to keep us in the loop with how you are feeling, we are all here for you. You don’t have to face this, or anything else, alone if you don’t want to

BritPuddles

@L_Volunteer I have been employed since 2017. It is the longest I have ever been employed in one Job. I am lucky the Civil Service has been amazing for me and I work in Diversity and Inclusion so again I have a real passion for everything.

For me the issues around my going back into the office is marred by my health and benefits to be honest. If I had my benefits back I could book onto the train into the seats needed i.e. seats with best space available and get my discount card renewed as it runs out July 2022 and I cant renew until PIP sorted.

I have given up trying to get Medway to do anything.

If I could I would move back to London or somewhere that has a better reputation supporting people with disabilities. at least in London my travel would be a lot less and I hopefully would get better GPs etc.

Here are things when I have asked for help here;

Me: Can I have a mobility assessment?
GP: We only do that for old people, your not old, so no.

Me: I need help with planning journeys that I havent done for the first time if I have no idea what I am doing or where I am going.
Social Service: get a map

Me: I have been having falls due to COVID
Falls Clinic: You cant blame everything on COVID, I got an exercise bike for the lock down

I have basically given up. I am finally in social housing and maybe just maybe I will get to move back to London one day with my walker but I have definately given up asking medway for anything unless urgent.