Hello!

MrWright

Hi, I’m Shaun nice to meet you all. I’m diagnosed with Ankylosing Spondylitis from the age of 18yr old I'm now 34.

I claim Employment and Support Allowance (ESA) under the support group because unable to work and Personal Independence Payment (PIP) standard rate on both components now which had to fight for at the Tribunal after move from Disability Living Allowance (DLA) which had indefinite enhanced rate on both components.

Recently done Personal Independence Payment (PIP) review and the telephone assessment with Capita, I know it's not gunna come back as want never does always have to fight it at the Tribunal is same with Employment and Support Allowance (ESA) is a joke.

I’m happy to be apart of the community with you all and look forward to getting to know people and hopefully helping others solve there problems where possible.

Sandy_123

Good afternoon @ShaunWright welcome to the forum, look faward to seeing you join in with the conversations

MrWright

Good afternoon @Sandy_123, thanks for the welcome 

MrWright

Hello @Beaver79, thanks for the welcome and OK much appreciated.

Hannah_Alumni

Hello @ShaunWright

Welcome to the community! How are you today? 

MrWright

Hello @Hannah_Scope, thanks for the welcome and extremely tired today be in bed early tonight. Didn't sleep much last night and was up at 4am. 😒 Thanks for asking, hope you well. 🙂

Hannah_Alumni

Hopefully you get some more rest tonight!!  

Steve_in_The_City

Hi @ShaunWright I have sleeping problems, but big time. I am not allowed to say on the forum what sleeping drugs I take but go to your doctor and insist on medication. For reasons I don't know doctors disapprove of sleeping tablets, but insist on getting some.  

MrWright

Yeah @Hannah_Scope, hopefully. 😒

MrWright

Hello @Steve_in_The_City,

Yeah same, deffo think have insomnia, even if say up all night and day then try go to bed cause literally cannot stay awake any longer when get to sleep wake up within 30mins, most nights bloody wake up gasping for air. 😒

Steve_in_The_City

Hi @ShaunWright Go and speak to your doctor. There is a medical term for waking up and gasping for breath, but I cannot remember what it is called. Perhaps this is the reason for your (maybe not diagnosed) insomnia? There is a sleeping aid you can get at Boots (or other pharmacies I expect) but you have to speak to the pharmacist in order to obtain it. There is nothing worse than insomnia. Believe it or not, I can go for a month without sleep; but the hours during the night seem endless. The sleeping aids advertised on tv are useless for me. You have to fight with your doctor to get the proper medication, but meanwhile the aid you can get from your pharmacy is quite good. Good luck, and I hope you get over this problem.

MrWright

Thanks @Steve_in_The_City, for the information, much appreciated and will look into it. 😉

life

Cut out the tea and coffee. Most people don't realise that soft drinks such as coca cola and pepsi plus the sugar free versions have a lot of caffeine in them.

Throughout the day it all adds up. Try stop completely if you want to get sleep patterns back to normal. Or at least try half what you drink now. 

Honestly it makes a big difference.

MrWright

Hi @life,

I drink green tea and only have max 3 cups a day with all meals breakfast, lunch and dinner. Not even daily most times just have one a day or none and just drink squash all time the no added sugar ones, don't drink soft drinks my Gastroesophageal reflux disease (GERD) says no thank you. 🤣

life

SʜᴀᴜɴWʀɪɢʜᴛ said:

Hi @life,

I drink green tea and only have max 3 cups a day with all meals breakfast, lunch and dinner. Not even daily most times just have one a day or none and just drink squash all time the no added sugar ones, don't drink soft drinks my Gastroesophageal reflux disease (GERD) says no thank you. 🤣

That's quite good but green tea also has caffeine. But I understand that everyone needs their kicks 👍

MrWright

Yeah @life, but has less caffeine in doesn't it to black tea and deffo coffee lol. 😉

MrWright

It's wierd @life, used to be really bad on coffee like 5year ago, drinking like 20 cups a day and got better sleep then to what getting now adays. 🤣

MrWright

Hello, @hotstuff, nice to meet you too! 😋

L_Volunteer

A warm welcome from me too @SʜᴀᴜɴWʀɪɢʜᴛ. Wishing you the best of luck with your PIP review and the telephone assessment with Capita.

How are you feeling about everything at the moment? Please don't hesitate to let us know if there's anything we can do to support you.

Thank you for also being willing to support others here on Scope's community. It is what makes Scope's community the supportive and friendly space it is 

MrWright

Hello @L_Volunteer, thanks for the warm welcome. 😊

Thanks for wishing me luck aswell with the PIP Review, I already did the telephone assessment just waiting on the decision.

Felling very overwhelmed because of my extreme anxiety, just not knowing what the outcome is gunna be and because evertime it has been reviewed before, I have had my claim stopped because get 0 points on everything, even though tell them that my conditions and problems have deteriorated and got worse. 🤔

I do try support people where I can because nice like that. 🙂

Look forward to getting to know you more and once again thanks for the warm welcome. 😉

Kirst89

Hiya Shaun, I also have AS I haven't met/spoke to anyone who has had the same before! How refreshing for someone to understand how hard it is constantly!