Has anyone been able to return to work and a "normal" life after diagnosis?

Morning all, I was just wondering whether after being ill for so long any of you have been able to resume a normal life after being on medication for a while.

I haven't been able to work for 12 years and I was only diagnosed 2 years ago with lupus, aps, sjogrens and raynauds. I have had a carer for the past 4 years and my level of independence is still decreasing. I can't manage all of my house work, i can no longer drive, i can no longer go out alone, i can only manage to walk about 300m and I am normally in bed by 8pm on a good day. On a bad day I can just shuffle to the toilet with support, I can't shower, hardly eat or drink and just "die quietly" on the settee.

I still live in hope that once my medication is sorted , now on MMF, Hydro, mepacrine and steroids, that I will be able to manage with out a carer and that I will get my legs and my independence back.

Unfortunately though, I haven't found a "good" story like that on this site yet, but I am hoping someone is going to change that :)

13 Replies

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  • I know lupusjon has a very positive story about how he was able to go back to work. Maybe if you send him a message he'll tell you about it.

  • I was fine for quite a few years after the initial flare, and then again for another few years after a second bad flare. I am currently not working after kidney failure last year - but hoping to get myself more or less normal again in the very near future. You won't ever be quite the same again - but it doesn't mean life can't be good, or that you can't go to work (perhaps not full time - but only you will know what you can manage). I hate having lupus, but there is no doubt that it has made me a nicer and more empathetic person that I was before (45 years of disgusting good health left me thinking that anyone who claimed to be ill was a blagger).

    Good luck with it all!

  • *than

  • Tiredmum, this is a fab question and one I revisit at least a few times a week. Up until a year ago I had a very busy life as a social worker and in and out of work I lived it to the full. After waiting the standard almost two years to be on the right meds (I think I am now) I live in hope. I still want to give it some more time, perhaps to the end of the year, to see if I could manage two days a week rather than full time. The dilemma though is can it be the say work as it is so demanding (I loved it before) but will my body cope now, will it set me back, if I fail because of my body will it set me back confidence wise. So many questions and I had not intended to finish work at 50 as until this I was in my prime. I do have it as an aim and if it's achievable then great but I think I am finally getting there emotionally with question of is it really everything. Perhaps I am managing this condition lupus/polymyositis because of the ability to reserve energies and take it easier on the difficult days. It's a hard one and I think probably a very individual thing. It's also a balance between do I want to work or do I want to make sure I am around to see/support my family for a long time. What is important in life etc. It's a difficult one and I know people have to think of financial issues too but for me I think my priorities in life are changing. I guess I haven't answered your question but it's a difficult one. I hope things get easier for you too as you sound as though you have had a really rough ride of it. xx

  • Ah I wish there was an edit button on here as I have made an error in the sentence -but the overall gist is there...sorry!

  • Hi, I wish I could tell you I did return to work and to being 'normal', but having had problems for many years and pushing myself and struggling on I guess I made my illness worse by burning the candle at both ends.

    I was a probation officer and lived a really busy life, I returned to work post diagnosis but eventually needed to go part time, after much effort and trying so hard I have been retired on grounds of ill health (at age 44!).

    Like mstr, I really hope this is not it for me, and would love to get back into work, even if it was p/t, but really feel I have to put my health first and try and look after myself.

    Life has changed beyond recognition for me right now, although I'm sure this is not the case for everyone. I'm sure some people manage their illness better than this and try not to give up hope.

    I really hope things improve for you as it sounds as though you've had a real tough time.

    Fingers crossed you'll see some improvement.

    Slowmo

  • Hi tired mum, I have some optimism for you. When I was first diagnosed I went through hell. My life revolved around sleeping, being sick I had a pulmonary embolism and was off work for 3 years. I was a workaholic and my life got turned upside down. At my worse I was walking with two sticks, only getting up to go to the toilet and aching in places I didn't even know existed. I could go on but you get the gist.

    Today 10 years down the line. I am working part time, I spend much more time with my family and my horrific experience has slowly bought us closer together.

    Coming close to dying gave me a new respect for life and as I started to climb out of it, the barriers I placed up all my life have started to drop and I am learning to talk to more people and experience life in a different much more positive way.

    I know my condition is unpredictable but I am making the best of the good days.

    My point is that lupus has changed my life, not always for the better, my mind still thinks I can do things that my body now cannot but it has changed it in ways I did not expect.

    You have a diagnosis now and hopefully as the meds start working things will improve. So don't lose hope just yet xx it's a slow illness, let your body re adjust and find itself. I think things started to turn for me at about 5 years and I have slowly been crawling back but I am still going strong :-)

  • I think that is sound advice twist.....it needs time to work out how things are going to be with your body. I think things are starting to be a bit more controlled with the meds......so I think for me 'just rolling with it' is how it has to be. Time will tell xx

  • I have always wanted to ask about work, after my maternity I ve not been able to go bck to work. The hours are too long and my doctor advised I move to a less stressful role and my office hasn't been able to make dat possible. The frustrating thing is dat I dnt even think I can do d admin , cos my fingers are all sore even to d extent dat it comes out with pores any little contact of d tips send me mad with pain. I feel useless and I need money but I have a flare almost every week. I wonder when it will end I really want to get back my life, loose weight, go to work and feel normal. My mum tries to tell me to give myself atlist a year am trying but it is not easy. I pray u get better . XX

  • Yes I have! I was diagnosed at 17 and was extremely ill still managed to work and have done the whole time, am now 47. However I have been lucky as my employer has been very supportive with absence and hospital appointments over the years. It seems I develop a new symptom or problem every year, however I rarely allow it to get me down and lead an active life. I do think this helps as I keep fit and ensure I don't put on weight, even though I've been on prednisolone ( and the rest!) for 30 years. I recognise everyone is different and has their way of coping!

  • Omg that all sucks, poor you. I was diagnosed with sle in 2000. I went on with kidney failure until Jan 2005 until I had creatinines of 1600 & was very ill. I worked 3 jobs throughout even though I was extremely ill. I started dialysis still going to work after coming off the machines, I'm too strong minded to let stupid Lupus and all the crap it throws at me stop me from working. I had a transplant and 6 days later was in at work seeing what I could take home to do to prevent boredom during the recovery period. I have new ills challenging me but I carry on still although I only work part time now. My batteries do get flat yes, I'm not superhuman, but I carry on even like now with horrendous scleritis in my eye, even though my work lighting and computer screen gives me unbearable pain. I really hope for you that you can regain some independance like I'm lucky to have. I think what I'm trying to say is when you have the energy, kick the butt of Lupus and don't allow it to get you this down again if at all possible Big hugs. X ps which county are you in, do you have any fellow Lupies you can see?

  • Morning all

    thank you all for your replies, I must admit some of you have put me to shame!!!

    Before I got ill I was a single parent with a full time job, I ran a cub scout group and couldn't afford a car so walked everywhere. I managed to carry on working for a while but ended up in hospital for 2 weeks thinking I was going to die at 29!!!!!

    I tried to carry on as best I could but the more I pushed myself the worse I got. I had no choice but to leave work considering that I had a bucket by the bed as i couldn't even get to the toilet for at least a month.

    After reading some of your stories I have sat here and thought maybe I don't push myself enough, but then I have realised that pushing myself is like one step forward and three steps back. I think I need to be content to plod along and be able to spend some time with my family. They don't like to see me so ill to the point where I can't even sit up or hold a conversation and that is always the result of me overdoing it.

    So I have decided that even though some of you manage FAR more admirably than I do I am going to give these meds a while longer to kick in and be grateful for what I have got.

  • Hi Tiredmum

    Please don't be hard on yourself. Lupus affects everyone differently. See how your medications work and just take one day at time otherwise you will make yourself even worse. Wishing you well.

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