any one had to stop work due to health? - PMRGCAuk

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any one had to stop work due to health?

susieb627 profile image
34 Replies

Iam 61, had thought I’d work until I was at least 65. I’ve just had a year off during which I had a craniotomy and RT as well as dealing with taking steroids for GCA which isn’t helping! I have just started a phased return to work. Work have been amazing and my return is very flexible. However, I don’t know if I can do it. I’m not sure I am capable of doing job and find working any hours and managing fatigue a challenge. Has any one stopped working on Health grounds? Were you able to claim benefits of any sort? I’ve already used a chunk of retirement pot and not added to it as had planned. Any thoughts/ advice welcome

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susieb627
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34 Replies
piglette profile image
piglette

What does RT stand for?

susieb627 profile image
susieb627 in reply topiglette

Radiotherapy

PMRpro profile image
PMRproAmbassador in reply topiglette

Radiotherapy???

susieb627 profile image
susieb627 in reply toPMRpro

Sorry, not for GCA! Since my GCA diagnosis in Jan 2022 I was diagnosed with meningiomas ( tumours between brain and skull) they were none cancerous but one was a type that is likely to grow back so had to have RT. Been hard to tell what symptoms are caused by what 🤦‍♀️

PMRpro profile image
PMRproAmbassador in reply tosusieb627

I was replying to piglette asking what it was actually. You'd mentioned craniotomy so it seemed logical. And yes, I can imagine it causes a lot of confusion!!

piglette profile image
piglette in reply toPMRpro

Goes to show my brain is definitely on holiday!

PMRpro profile image
PMRproAmbassador in reply topiglette

Brain????

piglette profile image
piglette in reply toPMRpro

Or asleep!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Many have …this is an information post written a couple of years ago - but most of the info remains extant - and hopefully  Sharitone who contributed to it will be along with more advice -

healthunlocked.com/pmrgcauk...

tangocharlie profile image
tangocharlie

Yes I eventually had to give up work in late 2017, not just for PMR but because of other things too including being registered sever sight impaired/blind. You may be eligible for Personal Independence Payment (PIP). Other benefits are means-tested so would depend on your circumstnaces, savings etc. First step would be to have a look at info about benefits on the gov.uk website, contact Age UK helpline (you're over 55) and/or Citizens advice. Also if you have any access to anything like Occupational Health take advice from them.

PMRpro profile image
PMRproAmbassador

Kendrew was determined to return to work but eventually had to give in - I'm sure she will see your question and reply but if you click the blue name you should get her profile and be able to see her posts about it.

Whether you can work really does depend a lot on what it is you do - I continued to work but I was freelance, working from home sitting in front of a computer and translating. No commuting and I could set my hours. I also wasn't entitled to any benefits being self-employed.

LucilleG profile image
LucilleG

I've been off work since mid-June 2021 (first had PMR symptoms in January 2021 at the age of 56, diagnosed at the end of May 2021). I'm on paid sick leave (long term disability) and will begin a gradual return to work sometime in early 2024. With the type of work I do, with a big part of it involving teaching, there is no way I can do that right now, but hope to be able to get back to it eventually. However, I'm also going to be careful and really listen to my body and how I'm feeling and if I can't do my job anymore, I'll figure out the next steps.

susieb627 profile image
susieb627 in reply toLucilleG

Thank you for your reply Lucille. I am now at the stage you expect to be early 2024 and am trying to figure out what the next steps could be. I really hope you recover well and if it’s right for you, you are able to return to your job next year x

Doublef profile image
Doublef

I had assesment by occupational health by the company

toniaell profile image
toniaell

Hi Susieb627 sorry to hear how difficult things have been. I'm taking early retirement in fact I finish this month. My work were great too but I just found the juggling of health and expectations too much. I'm only 57 so it really wasn't in my plan but feel I need to focus on getting well and figure to do this properly I need to get rid of any stress I can and my work is quite stressful. I'm seeing if I can claim my pension early on the grounds of I'll health but that can take upto 6 months to sort out. I'm blessed that we can manage as long as we're careful. We're having to move as im a vicar and live in a church house so that hasn't been straightforward and we're still in the middle of sorting the house out! I seriously never want to go through the last 18 months ever again but have been grateful for family and friends and this group to help me through. I'm also reducing meds and down to 6mg so hopefully I'm on the way out of the illness ! Take care

susieb627 profile image
susieb627 in reply totoniaell

Thank you for your reply and good luck with move and less stress in your life to help you towards a healthy life x

maxistar profile image
maxistar

Hi I was diagnosed at 52, reduced my working hours initially , with further changes in health affecting my vision I had to leave my employment in May this year as I couldn’t fulfil my role , I am currently claiming NESA , refer gov.uk , which isn’t income related , I found CAB very helpful too. I have put a claim into PIP and have a health assessment in a few weeks , but whether I will qualify who knows, as I understand it’s quite a challenge but with anything you have to put the work in . As you I fortunately have a small rainy day fund, but didn’t expect it would be used to fund day to day living whilst I am unable to work , Wish you well

PMRpro profile image
PMRproAmbassador in reply tomaxistar

Isn't it ESA, not NESA?

Sharitone profile image
Sharitone in reply toPMRpro

New-style ESA was introduced along with Universal CRedit, and is just for people with enough recent NI contributions to qualify on that basis, not means-tested. Replaces the old contribution-based ESA

PMRpro profile image
PMRproAmbassador in reply toSharitone

Oh right - just google didn't offer anything relevant!!! Not even vaguely relevant!

Sharitone profile image
Sharitone in reply toPMRpro

Probably because it's not usually referred to as NESA. Nothing wrong with your Googling techniques!

PMRpro profile image
PMRproAmbassador in reply toSharitone

No, but if I couldn't find it, neither would anyone else!!!!!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toPMRpro

gov.uk/guidance/new-style-e...

susieb627 profile image
susieb627 in reply tomaxistar

Thank you for your reply. Good luck with PIP application. I was turned down a year ago as they said they could tel if symptoms would last 9 months- if only! I think I will look into reapplying and fight for it a little more this time round! X

Sharitone profile image
Sharitone in reply tomaxistar

When you have your health assessment it's a very good idea to have someone with you, as the report they make often bears little relation to what happened, and it's very useful to have a witness to that if you ask to ask for a mandatory reconsideration.

Missus835 profile image
Missus835

Yes. I retired normally at 65-ish, but returned to work in April 2021. Worked from home. Neck and shoulder pain began in June 2021 after first Covid vax. This pain continued until August. Second Covid vax and pain hit the fan, although was diagnosed with "old age" by my then GP. Went on reduced hours as the company has no sick leave per se. Then entirely off that November. The pain became more excruciating and my Pharmacist recommended bloodwork. Inflammation markers were very high. GP knew a Neurologist in Halifax. He diagnosed PMR. Was off work until Feb. 2022. I had been on Employment Insurance sick benefits which is 55% of your gross avg. weekly. I almost got back to full hours, but had a GCA scare early this year. High dose of pred made me unable to concentrate, plus I was getting irritable with the customers. Knocked off work in Feb. 2023. Roadside Assistance is not a good place to work if your mind is not clear and you're irritable. For many complicated reasons, I have been unable to return. I am now 73. Would return, were I able. All PMR-related issues. I don't have a retirement pot, but Canada's pensions, which are not great and why I initially returned to the workforce. Best of luck to you.

krillemy profile image
krillemy

I have more or less stopped working 5 years ago at 51!! Had a great carrier. I do some consulting since 3 years as a freelancer, last year nothing at all. Mainly do to the fatigue. Also pain during bad periods where I can´t walk, stand or sit for long. I never know what days I have so I can´t promiss to attend a meeting ecr. I have received temporary disability pension from my Pension/insurance, they have just made it general, if I stay in this condition. It's a relief, and luckily I am aloud to work on the side, as I get so easily bored......

Sharitone profile image
Sharitone

Here I am! Firstly, commiserations if you have to throw in the towel. I had to give up after trying one morning a week(!) phased return to work with Citizen's Advice, over 2 years ago, when I realised that it was just too much. It was a terrible wrench, though. Particularly tricky when you are not old enough to get a pension.

If you cannot get SSP, you may be entitled to New-Style ESA if you have enough NI contributions from the last couple of years( see link below) citizensadvice.org.uk/benef...

HOWEVER, even if you have too much to get money from ESA, if you have less than 35 years NI contributions, you should still apply, because ESA/UC will cover your Class 3 contributions for your retirement pension.

Otherwise, you may consider Universal Credit. If you have more than £16k available to you, you will not get any money, and anything over £6k will impact on the amount you receive. Any income for a partner will be taken into account. There are online calculators to find out whether you are eligible.

citizensadvice.org.uk/benef...

Of course, the 'Biggie' is PIP because it is not means-tested. If you need help from another person, even if you don't get it, you may be eligible. You can check it out here

citizensadvice.org.uk/benef...

Obviously you will be getting prescriptions free, but you might just qualify for help with some other health costs, such as travel to appointments

citizensadvice.org.uk/healt...

If you have special circumstances, there might be other things you can apply for, so please don't consider this an exhaustive list.

Good luck!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toSharitone

TY

susieb627 profile image
susieb627 in reply toSharitone

Thank you. And so sorry for what you have been through. Will look at links. Did apply for PIP a year ago but turned down as they said they didn’t know if symptoms would last more than 9 months- if only!! X

Sharitone profile image
Sharitone in reply tosusieb627

Yes, that's one reason why I never applied! If you had a friendly GP or rheumy who would be prepared to stick their neck out and write something to the effect that you are unlikely to get better in 9 months, that would be useful.

Also, this is grounds on which you could appeal, particularly as they know you applied over a year ago. If you do appeal, I would get help with it.

Myfoe profile image
Myfoe

Susie I am taking early retirement I said PMR was not going to dictate my working life I fought hard and tried to tough it out needing crutches and walker but after a year I am still not able to give 100% my work quality has suffered IMO they don’t want me to retire but besides physical restraints brain fog comes and goes we advertised for my replacement the last few weeks and soon I will be training my replacement…

jls93 profile image
jls93

Hi susib627.Personally I stopped working a 2.25 yrs ago at 60 after gradually reducing work hrs over 5years or so

I attended a retreat yrs ago and the theme was " The 4 R's; Rest,Recover, Restore then Resume ". Over the years of my phased reduction of work and incremental return to work following 7 joint surgeried and PMR. The 4 R's helped to more clearly guide me where I needed to focus my attention during each recovery. My employer was also very generous with phased my multiple returns in that I didn't make commitment I could keep with a buffer.

I eventually applied and received disability income through Social Secutity (here in the States) and an additional disability policy I owned.

Also; There is a book, "Rewire not retire" which I i read early in my phased reduction of work 40 to 36 to 34 hrs/wk etc. The book essentially guides the reader through a series of personal inventories and introspection. Insights such as what motivates you, personal acumens etc . Helping to guide a way forward.

Best to you. Hope this helps .

Sincerely. Jeff

Myfoe profile image
Myfoe

I tried working less time but once in the office I couldn’t get back out the door clients come in at a crazy pace sadly working from home is not an option with the kind of work I do but I have a touch over 40yrs in I really need a break I suspect my PMR symptoms will improve once I reduce the stress from work which was monumental this year

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