To work or not to work?

To work or not to work?

Hi everyone I just thought I would ask everyone if they manage to work with there RA?

Before RA and Fibro I worked full time between 40-60 hours a week and somtimes more hours!

Now I still have the same job in admin as a planner however I struggle like crazy to manage 4 hours a day now and often have days off due to flares and Ive even had full months off work! I reckon I have had over 100 days off sick in a year, crazy considering before this illness I never had a single day off sick!

My rheumatologist offered to sign me off sick for life so that I didnt have the presure off work, but I told him no! I know I cant work everyday I know I must be a pain in the rear for my employers as they dont know when I will be in one day to the next! However I do know when I feel up to going in work it makes me feel loads better in my head its good to get out and socialise and going to work in a office full of work and madness make me feel like the old me for a few hours.

What do you do and how do you manage?

9 Replies

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  • I miss work so much have not worked for nearly 17yrs now, have attempted to work but go into a flare within weeks and then my rheumy goes mad. Having a job gives you something else to focus on and take you mind off the RA and sometimes the pain and, most of all what I miss is the socializing with others talking about normal everyday things, makes you feel normal again.

    I think its only when you have to stop work that you realize how much it does for you, I would recommend anybody to try and keep working if they possible can if only part time. As with me and possibly many others its not always the case my RA as affected everyone of my main joints and had surgery on nearly all of them.

    good on you for wanting to carry on working I fully understand that there's nothing like feeling your old self being the same person you were before that dreaded RA.

    mand xx

  • HI gals. I would do anything to be able to give up work at the moment. I run and farm with my partner, and have just had the dubious pleasure of having to tell him that I just cannot do full days any more. At my last nurse appointment

    she basically told me I need time to try and get this under control and keep on pushing myself, at a physical job isn't going to help. BUT like you say Mand it is good to get out when you do feel able. I would like to do voluntary work so that you have the best of both worlds, but unfortunately not the income. It's such a difficult thing to have to cope with. Only you know how you feel Julie

    it all comes down, for me, to quality of life and if working is making you feel worse don't do it? Easier said than done I know. Good luck x

  • This is a real dilemma for me too at the moment. I have always worked (normally part time) but when the RA hit me last year, I was signed off sick from June. Since then I've been getting to grips with what I can & can't do while watching my sick pay dwindle down to nothing. I tried to work out a return to work plan with my employer but their horrible attitude caused me huge anxiety so I resigned last month.

    Unfortunately financially we can't survive on one wage so it's become more & more urgent that I bring some money in. I successfully applied for another part time admin job in January but then faced the decision whether I should tell them about my RA. I didn't want to risk losing the job as over 400 people applied, so I didn't say anything. I'm due to start next week and am terrified that I'm not going to cope.

    I would love not to have to work and realistically I shouldn't be working as I know I'm going to suffer physically, mentally & emotionally. Sadly, with the horrific cuts to services and benefits by our lovely government, I think a lot of people with chronic conditions and disabilities are going to be faced with this dilemma.

    On the positive side (just read the above back and it sounds all doom and gloom), I do miss working and like to feel useful and valued.

    Fingers crossed!

  • I was medically retired from a senior management post in Legal Aid 20 years ago. I had no choice as I had been off sick almost since diagnosis 18 months earlier. Like Mand I have had significant surgery to several joints, and still live with much joint damage. My RA has not been adequately controlled for the last 12 months so I doubt I could manage to work (not that anyone would employ me!). I spend my time doing voluntary work when I am able.

    If you are able to work even for a few hours then for all the reasons everyone else has stated give it a go. It's important to be able to focus on something other than RA for a while and it gives you a purpose in life.

    Lyn x

  • Since I had my children I only work three days a week but I honestly don't think I could manage full time now I have RA - the fatigue is terrible. I work for a very large firm with well established HR policies so I do OK - we even have a an occupational therapy nurse onsite and when I was signed off for a couple of recently it was at her suggestion. That said - I still worry about taking time off, you never know what's said behind your back do you!

  • HI, i was diagnosed in Oct 2010 and since then have been off work about 5 weeks in total, i work in a school and they have been great but when i go back in i am so bogged down with work and stress i only manage a few day's before being off again ! At the moment i work 5 day's and am considering dropping to 4 and seeing if i can cope better !

  • Rheumatiodmummy, That is one off my bigest problems worrying what people say behind my back. And I keep trying to force myself back into work early because I feel so out off place when I get back, when I am off work sick I always ring in a few days a week when I can to try and keep upto date with whats going on but no one wants to really tell me out on the phone and that makes me feel worse.

    I wish they could understand that I work everyhour I can and that if I am off for weeks and go back in its not that my RA has disapeard its just that I am coping with the pain a little better and the fatigue.

    Ive even gone to work on my wheelchair when Ive been unable to move about due to my knees and hips being flared and swollen, and that was so hard to do having over 70 people stare at me, because Ive heard most peoples comments when they see you in a wheelchair "well she walked yesterday" "well she can get out off it to go to the toilet so why is she in it" I wouldnt use it if I didnt need it but using my wheelchair helps me to be able to spend a longer time functioning in a day, because without it I can be in bed for 3 days with pain just for 10 mins walking!! sorry rant over xx

  • I worked for my local county council for over 18 years and had a very good attendance record. However in 2007 I became ill and was eventually diagnosed with RA. I was off sick for 6 months and then had a phased return to work. About 18 months after this I went off with depression and stress caused by trying to work whilst suffering from RA and caring for my elderly mother alone. Whilst going through all the HR hoops and attending a hearing I had a fall and had a very complicated fracture of my left hip and wrist. I contracted MRSA in hospital and was finally finished from work in August 2010. I missed out on voluntary redundancy because somehow my application for this was "lost". Now I get carers allowance and income support and although money is tight I am much happier at home caring for my mother and being able to rest when necessary. Money isnt everything but health is of the greatest importance.

  • I am reading this and it is so nice to hear people who are experiencing the same troubles and worries as me, it is very comforting,

    I am 22 and was diagnosed in Sept 2010. I qualified as a registered mental health nurse just 18months ago and love my job. I work with older people with acute mental health problems.

    After training and working very hard to achieve my dream job i moved into a one bedroom house which i rent. I thought life could not get better. Four weeks after moving into my first home alone i was diagnosed with RA.

    I thought it was only something older people get, how wrong was i?

    I have battled with trying to work but an early shift following a late shift was impossible due to terrible stiffness and pain. I arrived at work one day to have a support worker put my hair up for me and my manager had to attach my alcohol gel onto my uniform for me as i did not have the strength in my hands.I went off sick and was told i only get 2 months full pay and two months half pay. I had to move back in with my parents as i could not take care of myself and manage basic tasks.

    I kept my home as i was and i still am determined that this condition will not define me, i have been moved at work to a treatment centre working 9-5 and having a routine has really helped it is a lot less physically demanding and my manager was moved there too due to poor health so it has really helped i feel very supported. I have had pressure to go part time and even stop working all together but i will not give in.

    Money is an issue and is a constant worry i am very lucky that my family and friends (most of them!!) are very supportive.

    I admire anyone who has RA and is able to work it is hard and gets you down but the social and positive aspects really help being in a caring profession you would be surprised at how not caring a lot of people are esp colleagues and managers!! But do not give in and try and remain positive even though at times i feel i have nothing to be positive about. This site is fantastic and thank you for all your support.

    Kelly x

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