How many PBC sufferers are still able to wo... - PBC Foundation
How many PBC sufferers are still able to work in their 60's?
I don't think that it goes by how old you are, but by how you are effected. i have been off work for about 9 months now, I'm only 42. I was diagnosed 7 years ago, with already high levels. Now those levels are 5 times higher. I suffer with an enlarged spleen, osteopenia, severe fatigue, itching and swelling in the feet, ankles and toes. The fatigue is the main reason I can no longer work. My progression is fast for PBC. If you feel that you are unable to work, talk to your doctor about it. I know that when I get to the point where I am very tired, my thought process is very bad.
Thankyou for answering my question. Have you managed to get a disability allowance to help with your finances if no longer working?
Yes I am on disability now, I was on a good plan. I had asked to cut my hours at work, so had to miss 3 months of work so that my insurance would pay for those days that I was taking off. When all the papers and forms came in and I had sent then to all my doctors that were involved, they decided at that time I should not be working at all. It was a bit of a shock to hear from my insurer that my dr. had requested this? I work in a school, so started in August (as a volunteer) until a replacement was found. My dr. didn't tell me about his plans because he knew I wouldn't go for it. But he knows best. My levels continue to rise at an alarming speed and are bad enough that I have decided to give this experimental drug a try. I can't tell too much about it, as I have not started yet, but some ppl have done very well on it, so I am hopeful that I will as well.
i no longer work, and i am 54 -- the Fatigue, the mental garbage we have to go thru, alot of issues caused me to go out, now i collect Disability --
How long did it take you to get disability and did you continue to work until it came through. The fatigue is really starting to get bad and concentrating becomes difficult. I'm a therapist in a nursing home and somedays the computer work is more than i can handle.
i filed end of november 2010 ---- started using a Law firm from the beginning -- i was denied at first, but then i had my Hearing on feb 2, 2012, and 2 weeks ago i got the notice of approval. i am NOT currently working, no. i DID try to work, during the time that i had applied, -- i did work From Home, part time, and it proved too much for me. - i do not even do that now.
Thankyou Dolores for answering my question. I gave up working full time at the end of last year and have a small occupational pension. I have started my own business which means I work for 3 hours, 4 days a week and hoped that I could manage that until I reached State pension age. however, they have just put that up so I now have to work until I'm 66 before I qualify!!! As I am alone it is good to know that if I reach a point when I am incapable of work then I may be able to get a diability allowance. Hopefully your health will improve now that you don't have to work. Best wishes.
I had to give up work about 2 years ago due to fibromyalgia and PBC. I was self employed and worked as a carer/homehelp. i was struggling to look after myself let alone other people. I claimed and got ESA. Last year I applied for DLA but was turned down. I have just put in another claim (helped by CAB this time) and am waiting for a response.
Didnt answer before as I am not over 60. Although I feel most days like I am in my 90`s I am in fact only 50.
I worked full time as a secondary school teacher - now trying to develop an after school tuition centre. I am 57 but feel older!! Thanks for your answer and good luick with your claim.
hi i have pbc 4yrs and 2 years ago i had to give up work, im 47, it was the joint and musle pain mainly but the rotten fatigue didnt help, it really is an awful illness, i hope everyone is feeling well to day
Hi I have not worked for over 3 years, and Im now 49. For me it was a combination of joint and muscle pain, and swelling in the lower leg, ankles and feet and the fatigue that made me feel unable to carry on. Im in the UK and managed to claim ESA and DLA but it was very hard work (should of carried a health warning in itself). I think you can check online what you could be entitled to at direct.gov.
Hi Val02
I tried to get DLA 3 years ago but was turned down. How do you get thru all those questions like - do you need help to dress, bath, go out etc.? I can do all these things but struggle with fatique quite bad on work days.
Hi Sophie9
Firstly I got the guide from the PBC Foundation which is a good guide to how to fill the form in. As far as getting through the form; it took about a month to fill in, I did a couple of questions a day. I got the lower rate on care and the higher rate on mobility. I was awarded the care element because I needed help with preparing my main meal, this was because I had dropped a saucepan of boiling water twice and scalded myself so in benefit terms this means I needed help i.e. someone to lift the pans. That was the only thing that gave me entitlement to the care element not the bathing washing etc. On the mobility element I qualified more strongly. I have arthritis of a non specific origin. So I am treated by a rheumatologist, so I cant walk far or very well as my ankles swell and feet swell up and become very painful. If you can demonstrate pain or thats it is detrimental to your health this will count as well.
Saying that they did turn me down first try. I wrote to them and asked them to look at it again and got it second time. I was told by a helpful lady at the jobcentre never accept your first rejection as that that appears to be a kind of filtering system always "ask them to look at it again," as there was a strong chance of getting it second time round.
As I think someone else mentioned its how you answer the questions and that is why you need the guide from the PBC that talks you through the form and provide as much evidence as you can, i.e. doctors letters etc. I noticed PBC is now on the DSS list of conditions so look at that because that is what they are looking at.
Hope that helps
Val02
i retired early from being a mindwife at 51, tho if i'm being honest should have done it 5 years earlier if i could have managed financially. The fatigue and concentration essential for my job was difficult to cope with, like getting up in the night on-call. So glad i finished now 19months ago, and still healthy enough to enjoy retirement. I still have little energy, my mornings are productive but sleep for 2 hours every afternoon. My advice is retire before your too ill!!
I find I am very tired in the mornings - even tho I sleep for about 10 hours a night but wake up in the afternoon so doing my tutoring after school for a few hours is ok. don't really want to give up work completely yet - apart from the fact that I can't afford to!! - still enjoy it and it keeps my mind active. Enjoy your retirement.
I retired a couple of weeks ago aged 38years. I am now in reciept of DLA and ESA. Its such an individual disease and we are all efected at different levels and at different rates. Although only diagnosed three years ago I am already in advanced stages of PBC and as a result have cirrhosis. I retired due to the fatigue and itch, its become necessary for me to return to bed each day.
As far as claiming benefits go I would strongly recomend you use a welfare advisor, these forms seem to be designed to fail people, its not what you say on these forms but how you say it.
What is ESA? Heard of DLA but not other. For me, starting with itching early 2010 and being in a job that worked full-time 5 out of 7 days and totting up 45+hrs (I was a manager, covering for my colleague for 5mths), I think it is fair to say that quitting later that yr was better for me. I'd not got the diagnose but made a wrong decision during 2009 in switching jobs. I should have remained in my previous 20hrs a wk Mon-Fri job 11am. until 3p.m. and feel I would have ben a helluva a lot better when the PBC sympton started as I wouldn't have suffered like I did for mths in 2010 with fatigue.
Did get offer to return recently to my 20hrs a wk job BUT declined after a good think about it. Suddenly didn't want to work in a building with doctors anymore!
I haven't considered any form of disability as I know at present I am fit for work even tho' I know I def could not hack a full-time position. (Fingers crossed I get an interview for a 20hrs per wk job the closing date is today.) I do work voluntary once per wk which I enjoy (got asked back when I finished my full-time job 2010).
By the way I am 47 but cannot see myself working even part-time at aged 60 and even so, for women in England now, it is 65 for majority of us, me being born after 1955, I'm one of them who wouldn't get retirement (state) pension until I was 65.
Fortunately my husband has a pretty decent job and tho' we don't have a fancy house or car, it is far more important having free time together as we can have now I have not got a regular job to consider re hols and time off like we did during 2010.
I had to stop working in April of 2011 and filed for Social Security Disability and was denied twice and now hired an Attorney and waiting on a hearing. I was told it takes 12-18 months for a hearing. I would love to return to work but the joint pain, muscle pain, migraines, URQ pain, fatigue and concentration and memory problems doesn't allow me to be able to do much of anything. I loved my job and it's difficult being at home 95% of the time. I am so thankful for my hubby because I wouldn't be able to survive without him. Hopefully I will be approved at the hearing level. I hope everyone is able to enjoy the weekend.
ESA is Employment support Allowance which took over from Incapacity back in 2008.
I had my own business and when i got really ill, lost it all! I was subsequently told by DWP that I was unemployable due to the eratic effects of my fatigue. I can go several days and be ok ish then have days where I am so fatigued I do very little.
from what i gether with the replies above, there may be replies from people both In USA and UK.... the laws and benefits are very different in both countries.
In the Uk, which is all I know about, the definition under the diasbility and equality acts of being disabled is:
•they have a physical or mental impairment
•the impairment has a substantial and long-term adverse effect on their ability to perform normal day-to-day activities
if you fall into these catagories... your employers have to support you, if you can no longer work even with support that they offer you then you should be eligible for DLA /attendance allowance depending on your age.
In this day and age, it is scary with finacial commitments and ever raising living expenses to cope with, but you have to look after your health so its definitely worth while getting advice from the PBC foundation and also your local welfare rights office to see what you can claim and what other help you can get.
Thank you to everyone for your replies. Still coping at moment!! Just turning 58 but have to wait until over 65 for state pension so long time to wait yet!! Still if too much will try for ESA. Look after yourselves!
Hi i am 62 and still work part time in the Ambulance service. I find it very difficult to carry on sometimes and i think when i need time off due to fatigue etc most people think i am putting it on..They should change places with me for a day and then see how it feels.I think this site has helped me so much as i thought i was imagining the symptoms i am experiencing. Take care all x
Hi Woodbine, Thanks for replying. Take care x
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