I feel like I've had enough - Fibromyalgia Acti...

Fibromyalgia Action UK

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I feel like I've had enough

17 Replies

Morning my fibro family,

Apologies, I haven't been on for a while due to a combination of; not being well, organising my daughter's 21st, not being well, holidaying.........oh, and not being well!!

I've come on this morning for some moral support from people that know exactly where I'm coming from.

I have the week from hell next week and it is already making me feel really unwell, my FMS, CFS & Crohns are all being exasperated by my worrying, and all flaring up at the same time.

Having rec'd an award of Standard Rate Mobility for PIP, I currently have a reconsideration being carried out on Living Allowance. I was confused that I was entitled to mobility, but it didn't affect my daily living......hence the Appeal.

I am also currently appealing against my employers decision to deem me unsuitable for ill-health retirement.

Next week I have a work capability assessment for ESA, 2 days later I have a medical meeting regarding my ill-health. Although I will be accompanied by family members to both meetings, even with their support I don't think I can get through next week.

I can't bear to have another meeting with people I feel don't believe my chronic pain & fatigue, or my anxiety & depression.......I just want somebody to believe and understand, so all this paperwork can finish and I can concentrate on trying to feel a little better.

Please help, what can I do to survive next week?? 😪

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17 Replies
Regnofibro1 profile image
Regnofibro1

I believe you!! I would say try to relax and calm done a bit but I know how we can worry about things. It's like it gets into your head and you can't let it go. I will say it's great you have the support of your family. So many of us went through getting benefits alone with our family saying it wasn't true. Try to do what you can when you can. I wish you the very best! So here is a hug to keep you going through this stressful time!!

in reply to Regnofibro1

Thank you xxx

Regnofibro1 profile image
Regnofibro1 in reply to

Your welcome

Fermerwill profile image
Fermerwill

Please try and find somewhere plus make time to relax / take sometime out. Recharge your batteries

Explain in full how your condition affects you on a daily basis to family member who is going with you .

You must be honest with your family member that is supporting you through this .

Sending big soft hugs and wishing you good luck

in reply to Fermerwill

Thank you xx

BlueMermaid3 profile image
BlueMermaid3

Hello there

I'm so sorry for the amount of stress you are under at the moment.

Pleaae could I make a suggestion? I think it would be a good idea if you could get a Disability Advocate to accompany you to your meetings.

They are good people to have on your side and will help you to explain your disability and how it affects you.

Please forgive me if I've read your post incorrectly. Are you appealing against a PIP award that you've already been given? If so, are you aware that by appealing you run the chance of losing your award completely and ending up with nothing.

Rest up as much as you can (which I know is almost impossible under some circumstances and keep your mind occupied doing some colouring or such like.

I hope that helps. I will be thinking of you.

Hugs Lu xx

in reply to BlueMermaid3

Hi Lou,

Thanks for the advise, where would I start to look for Disability Advocate please??

My PIP award was Standard Mobilty, I have asked for a manual reconsideration to question the markings behind the Daily Living, for which I was awarded nothing......so I considered I've got nothing to loose by asking for a reconsideration!!

I'm still finding it hard to understand how I got the mobility rate, but they considered that this didn't affect my daily living, but we'll wait and see.

Deb xxx

BlueMermaid3 profile image
BlueMermaid3 in reply to

Hi Deb

I need to double check this, but I'm pretty sure that if you ask for a reconsideration you are still at risk of losing what you have already been awarded. Just because you have already been awarded it, the DWP can still take it away from you.

One of our members recently lost her Motorbility car when she asked for reconsideration.

(I joined the forum in 2012 so I've seen quite a lot of this type of thing take place. I also have ESA and PIP so have been through the mill too).

I know several members of the forum have had their awards taken away completely when they asked for a reconsideration.

If you Google for a Disability Advocate for your area you should be able to find one. Do you have access to a MIND in your area? They can also give you the number for an Advocate.

I'm pretty sure you could end up losing the Daily Living that you've been awarded.

Please, please check before you go ahead with your reconsideration.

Do you have a Union Rep to accompany you at your work meeting.

Also is this your first assessment for ESA?

Let me know how you get on finding a Disability Advocate. I believe that you can also get some help from a lady on here. I'm not sure if it's Janet. If you pm Ken (The Author) and ask him, he will know.

Are you ok with using the Internet? No offence intended. If not, I will try to find one for you.

Lu xx (btw I'm Lu not Lou - we also have a Lou so it's a bit confusing! x

in reply to BlueMermaid3

Bloody predictive text!! I had just noticed as I pressed the submit reply button.

Thanks again Lu for the information, I'll look for one now and if no success I'll try MIND as you advise.

My husband will come to the work one with me, he knows better than anyone what I go through on a daily basis.

I haven't been awarded any Daily Living, that's why I asked for the reconsideration.

Thanks again, Debi xxx

BlueMermaid3 profile image
BlueMermaid3 in reply to

Hi Debi

Apologies that I misread your post! I'm more than happy to try to find you one for your area if you're unable to.

I would still recommend that you have a Union Rep at work, as well as your husband, if at all possible. They will know what your rights are.

Don't hesitate to message me if I can help with anything xx

in reply to BlueMermaid3

I've finished work now Lu, I'm appealing against their decision that I do not meet the criteria for ill-health retirement, even though I have Occupational Health reports that say otherwise.

My Union are on board, but I thought Jim can give a realistic view of what my daily life can be.

I can't get out of bed today through pain, telecom with my doc tomorrow to change meds & just hope that comes across in my ESA Work Capability Assessment tomorrow!!!

Thank you for being a sounding board xxxxx

BlueMermaid3 profile image
BlueMermaid3 in reply to

Hi there

Do you have to attend for the ESA Work Capability Assessment tomorrow?

xxx

in reply to BlueMermaid3

Yep, I'm reading through the Benefits & Work Guide in bed!!

How rock and roll am I??

Deb xxx

BlueMermaid3 profile image
BlueMermaid3 in reply to

Lol! Good luck with it. Lu xx

TheAuthor profile image
TheAuthor

I am so genuinely sorry to read of how you have been suffering and struggling and I sincerely hope that you feel better soon. I also want to genuinely wish you all the best of luck with your assessment. Please take care of yourself.

All my hopes and dreams for you

Ken

in reply to TheAuthor

Thank you Ken, means a lot.

Debi xx

A quick update on my ESA WCA yesterday.

Turned up at 3:35pm (10 mins before my meeting time, as instructed in my letter).

8/9 people seating in the waiting areas.

I was advised that they were running late, but I could wait until 4:30 just to see if I got in to be seen, but everybody will be sent home at 4:30. I advised the young girl in reception that I wouldn't be able to sit and wait that long without being in chronic pain.

I was asked did I want to make another appointment for morning time to ensure that I got seen..............next appt 9:00am on 4th December!!!!

That long delay after a sleepless night..........and breathe again until 3rd January 😅😅

Appeal meeting tomorrow for ill-health retirement from work........and then a well deserved meal with the long suffering husband💑

Deb xxx

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