Hi everyone,
I read recently that "most people with R.A can and do work".
This was in the N.R.A.S New Year 2010 magazine.
Now, maybe I am mistaken, but I am sure that I have also
read that within X amount of years from diagnosis many people have left work.
I would imagine that the type of work a person is doing when diagnosed would
greatly effect whether or not they could continue to do it - e.g a waitress carrying heavy
trays of food or dishes would presumably no longer be able to perform such a repetitive
heavy task, etc?
I am left with the feeling that those with R.A who do not work may be perceived as being
too lazy to be bothered?
My own feelings on the "whether to work or not" question, is down to each individuals
experience of their disease and the availability, in a shrinking economy, of suitable positions
being available to suit individual needs.
Personally, I would like to explore the possibilities of voluntary work as I do not feel up to paid work.
But, I also really do hope that we, the non-workers, will not be thought of as useing R.A as an excuse
to avoid work.
What do others think? Replies welcome,
Fiona

I feel that i have done everything in my power to continue with work , but as time goes on i can see why so many people actually leave, i am a support worker/was a support/time and recovery worker i was unable to carry on this position as it involved a lot of outside community visits etc which i was unable to do due to foot probs,

I worked for 2years after being diagnosed , i then became so tired, i asked if i could reduce my hrs from 37 1/2 to 20 hrs which is a difficult thing to do when you have been in the same employment for 22 yrs, as i know it will have a massive effect on my pension within the N.H.S.

I have in the last 2 yrs been off sick i would say at least 60% of the time, even though i have been to sick, to go to work, this has not stopped the guilty feelings, i have when work colleagues tell me how short they have been at work and they have had no extra cover bank staff etc, i am now suffering with depression, i didnt notice it creep up on me, when you consider that i have worked in the mental health service, you would think i could read the signs, i now know that this may be another reason i am so tired and unable to cope, i just wish some one would allow me to leave without having to maybe being sacked due to long term sickness, as i know that ill health retirement is almost impossible, i hate this disease as i am sure you all do but what can we do! ENOUGH SAID .........SORRY ITS SO LONG, This, i am sure has an effect on the care that i am expected to give to the clients i work with, let alone the colleagues who have to carry my case load.

Anne-m

I was medically retired last year after anti TNF failed. My old employers were really good to me.
I am now doing voluntary work for the Youth Offending Team as and when I feel able to, long term I am hoping to be accepted to train as a magistrate if I feel up to it. It took me a long time to come to terms with giving up work, but just could not carry on.
Jan x

I was dx aged 6 and had RA 10 years before starting work full time. I carried on working full time, save for a couple of years when I had babies and worked 2/3 days a week, for 22 years in a Solicitors' practice. I would have carried on working if someone hadn't driven into the back of my car necessitating neurosurgery to decompress and fuse my spine from C3-C6.

I don't feel any guilt for not working, I didn't ask for this disease and feel I worked for as long as I could. If I didn't have RA I would definitely still be working now. I could have claimed DLA years ago, but didn't until 2002.

Hi everone who has replied to my post about employment so far.
So thank you's to Maria, Anne, Barbara, Jenni, Barbara (Barbiegirl), Jan, Caroline and Carol!
I felt hesitant, at first, about posting it, because if 15 years ago I had realized how my own
experience of R.A would reduce my energy levels, cause endless months of nagging pains all
over my body (although my bizarre kind of "remission" as far as greatly reduced pain goes on),
then I would have felt even more afraid of my diagnosis than I already did!
As it was I just believed that "time" would heal me" and unfortunatley it did not.
Hydroxychloriquine kicked in for me after 6 months, greatly helping my pain, but certainly
not to the degree of being able to consider working.
I have found that being able to "pace myself" i.e doing practically nothing if I don't feel up
to it, has been the best thing in conjunction with scrupulously taking my Hydroxy twice daily.
I have never considered taking more medication and live in fear of my Rheumatology appointments,
because I know that if my X rays ever show bone erosions, my Rheumatologist has told me that he
would then want me to go on to stronger meds. He can hardly believe that I am still only on Hydroxy.
I understand that strong medication can improve people's lives, especially helping to slow or even
avoid bone destruction caused by R.A.
But I have always been the type of person who fears daily medication and the stronger the substance is, of
being damaged in other ways by it.
BUT being at home all the time is a weird way to live for someone like me.
I like to meet people and interact with them.
I don't even drive, so rely on Taxi's to get out on the few occasions that I do!
The isolation has been pretty hard to cope with over the years. (My kids are all grown up and left years ago.)
Than you for asking about my Spine, Barbara.
The saga of it continues, however, very slowly, over the past 4 months it has improved slightly although
I still need to take pain medication and have a cushion behind my back when I sit down.
I have been referred to Exeter Hospital to see a specialist but the wait is 9 - 11 weeks!
(Remembering that I hurt my back in september time! Why was I not referred earlier?
Because the Doctor thought that I had pulled a muscle - should of noticed that I do not frequent their
surgery much usually!)
Anyway there is not much use getting too angry about it now - maybe I should have gone straight to
A&E!
Much love to everone and please keep replying with your experiences and opinions about R.A and work.
Fiona

lizziemouse- I did OU when I stopped teaching- it was FANTASTIc.

they are flexible but their disability services are second to none, if you are retraining due to disability they can even pay the fees (i think this is means tested though) or if it is your first degree or first qualification at that level it is free fees (again means tested- but we get it even with Richards salarie as it goes on YOUR income alone)

My gran was so impressed she did a sociology degree at 78yrs old!

i got a free lap top, digital voice recorder, voice recognition software, printer, scanner and they ring bound all my bks to hold them. They gave me lifts to tutorials and paid a carer to help me with the residential wk in the summer

it is flexible, Im not doing any at the moment but i can go back to it at almost any time.

their courses are really interesting too! But lots of reading and a good 16hrs a wk.

jenni x

After five years of RA, I decided to give up work last September. There was absolutely no way I could carry on working any more. I'm on my own with two children (I have someone in my life but we live apart) and I felt I was close to having a breakdown. I've started seeing such a big improvement in my everyday life and I feel I can function as a human being again. I've been classed as "limited capability to work" so I suspect I'll have to go back to work in the future but for now, it's the best thing I ever did!

I second some of the other comments about the OU. I started a Geology degree some years back but had to stop because I was just too tired with the RA but even then, got soooo much support from them. I've started up again with a very short three month course and can't speak too highly of the organisation.

Joanna

Lizzie- so much of what you said rings a bell with me. I'm finding that work stress- largely due to lack of understaning and unpleasantness fro mcolleagues (and family stress which I won't go on about ) has had a very serious impact on my RA in the past few months. I think I may have to start looking at other options, as I can't see things improving much at work.Unfortunately, being over 50 I feel my options might be limited. Theoreticaly, because the RA has been well controlled, then I should be able to work. But as we all know, the reality can be very different. I guess with me much of it is a feeling of insecurity, a resistance to change and still being in denial about having RA.

Joanna- it was so encouraging to read that you have started to see a big improvement in your life and that giving up was the best thing you ever did for now. I shld tart thinking about my quality of life.