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

Hi, my name is Poli80!

Poli80

Hello everyone. Hope you are all as well as can be. I'm new here so few words about myself... My name is Paulina , I'm 21 by heart, but really add 20 years

, I'm a single mum to 10yo boy and disabled since 2014 when I damaged my back and unfortunately unable to work due to my health. I was also diagnosed with fibromyalgia in May last year so life certainly isn't the easiest, but hey.
On ESA and PIP (old benefits system), but 4 years ago my ESA was stopped due to many discrepancies written in the report by the assessor. Long story short I didn't give up and ended up in tribunal which I won as the judge and medical professional have seen the errors made by DWP. So I'd encourage everyone to go with the whole process of appealing MR etc if you know you're right and you've been a victim of the assessors wrong report! Good luck everybody! X

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Comments

Sandy_123

Hi @Poli80 welcome to the forum, well done on winning, have a look around and join in with the topics.

Poli80

Hello @Sandy_123
Thank you very much my lovely. Will do for sure and if I can help anyone I'll be more than happy. X

Alex_Alumni

Hello and welcome @Poli80 thanks for joining the community and sharing a bit about yourself

Well done on pursuing the tribunal, I'm so glad it was a positive outcome.

Please feel free to explore the forum, you can browse different topics using the categories page. If you have any questions or need a hand, just let us know

Alex

Poli80

Hello @Alex_Scope

and thank you for your welcome and kind words.
I was super happy about the tribunal outcome which I received no longer than 10 minutes after the hearing ended and because it was such a short wait I though "that's it, I'm doomed " , but it was indeed positive.

I'm browsing and reading at the moment, thank you my lovely

. X

Poli80

Hi @Teddybear12 and thank you very much. I know it's a exhausting and very stressful process, but it's worth a try as the judging panel are people too and the medical professionals on the panel are the specific ones to every claimants disabilities, I've had a neuro surgeon and that lady was very lovely. So please don't give up darlings. X

L_Volunteer

Hey @Poli80

A warm welcome from me too. It is great to see you have joined Scope’s forum. How are you today? Well done with your tribunal case! I bet that brought some much-needed relief to you and your family.

It is always really great to hear such positive stories. You will be surprised by just how many people your post will reach! Thanks also for your support to our community members. Your support is always recognised and appreciated.

Take care for now and if there’s anything at all we can do to help please don’t hesitate to reach out to us again soon

Danielle_2022

Hi @Poli80,
Just wanted to join the others in welcoming you to the community & also say thank-you for sharing your story. It's so nice to hear one with a positive outcome, especially because it will give hope to so many people going through the process currently.

I'm sorry to hear that life hasn't been easy for you and your son, have you had much support since the diagnosis of fibromyalgia?

Poli80

Hello @L_Volunteer and @Danielle_2022

Hope you are both very well.

Thank you very much for your welcome and beautiful words ladies.

Winning ESA tribunal hearing was a massive relief indeed as I felt like the DWP treated/seen me as a liar unworthy much needed support and I'm sure many disabled people feel the same way and that's very unfair especially if you have all medical evidence supporting your claim. I've also had great help from my local MP regarding reinstatement of Housing benefit asap as this stopped when ESA was terminated and he (MP) contacted the director of housing in my council directly on my behalf. Long story short, I was contacted by the director, sent requested documents to him directly, I've also asked for housing officer to visit me personally and my HB was reinstalled within 48h until my tribunal hearing and outcome regardless of ESA being stopped (and backdated too which was amazing). Unfortunately at that point I didn't know that DWP should've paid ESA to me from MR onwards so me and my son relied on food banks a lot during that time until my local JC manager (that lady is a gem) told me that I should get ESA until tribunal so it was back dated once I rang them.
It was very tough, but luckily I got amazing few friends and my boy so they kept me going.

All the people I mentioned above were fantastic in supporting my case including CAB, my landlord and supply companies which I kept in the loop at all times (gas, electricity, water) to avoid being cut off etc.
Hence I really really encourage every single person to get as many officials involved in their cases as possible, medical professionals too as they're a vital part for us.

I'm struggling a lot, but thank you for asking. My son as he's a typical 10yo boy he's also amazing, helping soooo much with everything and understanding the fact that I can't do a lot with him. I think the only "positive" coming out of my disability is the fact that my boy is extremely understanding, sensitive, caring, helpful, kind and loving towards everyone (I have many reports from his school about him helping others on daily basis which is a proud moments) and I hope he'll grow up to be a fab young man.

Gosh, this is long reply🙈 sorry. Xxx

Poli80

@Danielle_2022 for now I'm on medications for fibromyalgia as well as for my back injury etc. I'm awaiting to hear from my rheumatologist for follow-up appointment after lots of blood tests and specific mri scan. Other than that not really. this condition is horrible and I still don't fully understand it. X

L_Volunteer

Hey @Poli80

I am well thank you. How are you today? Kindness is the very least we could do.

It sounds like you have been through a lot, and I am sorry to hear that. As you say, I think a lot of disabled people can relate to that. However, well done you for persisting through it and being determined for the best possible outcome.

I am so glad the situation turned out positively, and you got what you deserve! Aww, your son is doing amazing indeed, and really kind. I also have fibromyalgia so I can understand some of the difficulties you may face with this. It can be difficult but your positive energy and determined attitude are super important and I am sure will get you through.

Do let us know if there’s anything at all we can do to support you and your son though

Danielle_2022

@Poli80,
You absolutely don't have to apologise for the length of your reply -- it's always good to hear about your life & I'm so glad that you received so much support in getting there. That can make all the difference, I think! I agree with what you said about accepting as much help as possible, otherwise it can be easy to get forgotten, which I'm so glad didn't happen in your case.

Your son sounds incredible and that's all credit to you. Being a disabled parent can be uniquely difficult at times, but it sounds like you're balancing it all well. Those reports at school should tell you everything that you need to know & I don't think you have any worries there

I don't have fibromyalgia myself, but my partner does, so I know how frustrating it can be to get access to the right pain management. I think there's so much that's misunderstood about it on a wider level, too, which doesn't help. I'm glad that you're on the right track, though. Please know that you can also use mobility aids and everything, if you're not already & would find that useful. In the meantime, you might want to check out our category on rare, invisible and undiagnosed conditions for a chance to connect with other people in similar positions.

I see you

janer1967

My son was 10 when I became disabled and he has been my rock and has taken it all in his stride

I also think it has made him more caring and understanding of others around him

I was so concerned I couldn't do things with him that he should be enjoying doing at his age but we do what we can together and he has never complained or resented my limitations

Poli80

@L_Volunteer I'm really glad you're doing well my lovely.
Me not so much I'm afraid at the moment, , but thank you kindly for asking and for all your kind words ❤️ I'll get there.

Being kind doesn't cost a dime and we certainly do need kindness all around.

Thanks darling, I hope every disabled/struggling person will find the strength and necessary help /support to fight for themselves.

I'm so sorry to hear you're having to live with fibromyalgia, it is horrible. But you're right, being positive and smile can change a lot and my boy is my rock and drive to get up every morning, even if I can't physically stand up he's always there.

Thank you again, I feel positively overwhelmed by all lovely replies and kindness I'm receiving ❤️❤️❤️

Poli80

@Danielle_2022
Thank you so much my lovely. Aw bless you, I tend to write essays haha. Yes, you're absolutely right that it is easy to forget for people or for ourselves that we do need help. Especially if you're very independent, stubborn and proud person like me that didn't have to ask for any help until my accident. It can be overwhelming and frustrating as we may think we'll get rejected asking for help. I'm very lucky and privileged to have all of them people in my life.

Thank you, he is my rock and I'm extremely proud of him.

I'm so sorry to hear about your partner, it must be a struggle for him/her and for you, but having such a lovely person such as yourself by their side must be lovely and beautiful.
You're right, it is very much misunderstood and I myself think every person with fibromyalgia suffers on different levels and has different symptoms hence its not easy to explain to others what it is.

I had no idea about mobility aids rather than what I have which is crutches and motability car so thank you for letting me know as well as the specific category to look for, much appreciated my lovely.

❤️❤️❤️

Poli80

@janer1967
Aw bless you my darling. I'm so sorry to hear about your troubles.

It sounds like you have a truly wonderful boy there and it's all down to you ❤️❤️❤️ well done you and your boy!!!

Thank you very much for sharing this with me. I have the same worries as you and keep apologising to my son all the time for not being able to do this or other and he tells me off for saying sorry 😊 we too do whatever we can together and we have an incredible bond and like your son mine never complains either, he's happy with whatever we're doing.
He wasn't even 4yo when I damaged my back and before that we were always out doing different thing as I was sporty my whole life so he didn't understand at first why we couldn't do things that we did before, but with time and help from my friend (outdoors and playdates) he has become my little carer and as he's growing up he help with more and more. Xxx❤️

Danielle_2022

Hi again @Poli80,
I know exactly what you mean about stubbornness when asking for help. I have been disabled for my whole life and still struggle with that idea sometimes! Just remember: you're not defined by any of the things that you need help with. You are (and always will be) a complete person outside of that, too. You deserve it. Anything that helps you to live your best life is always worth pursuing.

Thank-you so much for your kindness about my partner, I do my best to support them as much as I possibly can & it's really validating to hear that it's working! I agree with you about it being a spectrum, especially considering that not much is known about its causes, which don't ever seem to be the same. For what it's worth, you're always welcome to shout into the void here -- someone will always hear you.

About mobility aids, you can also get wheelchairs and/or walkers, if that would ease the pressure. I know that it can be exhausting, but don't ever stop advocating for yourself. Make sure that you always feel heard by your medical team, even if it takes multiple emails/phone calls. As with your appeal, you'll get there in the end and it will be so worth it. Your son is lucky to have you!

Poli80

Hello again @Danielle_2022 😊

Oh I am the most stubborn person in the world I think 🙈😂 I'm so sorry to hear that my dear, but it sounds to me like you're this amazing person full of joy and drive and all the goodness within ❤️
I think I knew we're not defined by our asking for help (I was also born without two fingers in right hand, and even so I was unstoppable since I was born), but thank you for reminding me about it!

Dont thank me lovely, sounds like you two are fantastic two souls great for each other ❤️ and lucky to have one another.

Oh I wasn't sure about the wheelchair, I may ask, but walker wouldn't be for me as fibromyalgia is affecting my left hand horribly and I can't put too much pressure on it due to elbow and all hand joints suffering too much, but thank you for the advice I'll certainly look in to it.

Oh no huni, my appeal was won 4 years ago 😊 I hope I won't have to go through this again. X