[cattibby]

Hi all,

The title says it all....i am off sick from work (have been for the last 2 1/2 months). I had an appointment with my works occupational health docotr and he says if im no better when i see him next month (27th January) he will have to do a report to my work telling them he considers i need to retire on the grounds of ill health.
I know work cant wait forever for me to get better but i am now on steroids (6th day today), although i woud say i haven't noticed any improvement.
Im so frustrated with sle......i so want to be well, i so want to be back at work, i don't want to have this illness force me to lose my job. I have been there for 22 years.
When the doctor told me they will sack me soon so best to go for ill health retirement i burst into tears. He said i maybe able to get another job in the future......but.........i dont want another job, i want my job, it is more to me than just a job, it is a huge part of my life, its all i have known my whole working life, i have lots of friends there and i will miss them all so much.

WHY DOES IT HAVE TO BE THIS WAY???

Jane
x

 

[KarolH]

Jane,

I understand your frustration and I hear you loud and clear. Know that you are not alone in how you feel. I am out on SSD and have been for 2 1/2 years now and I do miss my friends and my job.

I can tell you that although it takes getting used to and it is normal to miss "what we had", time does heal the hurt we feel and we move on to other things in our life.

Maybe reading more, a new hobby like knitting or ceramics, a new pet to keep you company, etc......something to fill a void. There is always volunteer work or woman's groups that you can get involved in too.

My heart goes out to you. What will be will be. It is hard when we do not have control of our own life or what direction is going in but everything for a reason.........we may not know why but somehow it works out.

I am sorry your hurting so bad. I really understand your feelings. Try to keep your chin up...Let your mind be a peace.:wink2:

 

[Lis]

Jane, I'm so sorry you find yourself in this position. I have to say that I started on steroids recently and they are now working - took about a week before I started to notice a difference. It was quite small at first - realised I wasn't falling asleep every 5 mins and now after almost 3 weeks I'm having consecutive pain free days for the first time in years. On the work front you don't say whether you are working full time or part time. If it's full time, have you considered part time or flexible working patterns to cope with your illness? - employers are supposed to respond to reasonable requests in order to allow you to keep working if you can. i'm lucky in my job as I can sort my diary to moreorless suit myself so when I get a bad lupus day I just work from home rather than end up off sick.
I do hope things get sorted out for you and that there are alternatives which mean you don't have to give up work altogether. But remember your health must come first.
Lis

 

[lazylegs]

Hi Jane,

I hope the steroids can turn things around for you before your appointment. It would be lovely if you could return to a job you really love.

When I had to leave work I thought I would go crazy being home. It turned out to be just the opposite. It was like a weight was lifted off my shoulders. I was no longer living my life to be well enough to make it in for the job. I could actually relax and enjoy something for myself.

Your work relationships don't have to be lost. I have managed to keep in touch by email, phone and or getting together with my closest friends. It takes a little more effort but if you really consider them friends it is worth it.

Take care,
Lazylegs

 

[Jirel]

Jane, I'm sorry. I know from recent experience that even if you THINK you want to leave work because of having so much pain and fatigue, once you do it takes a lot of adjusting. But I will tell you that I now have recurrant nightmares about trying to work and not being able to perform. These are caused by months of staying in my job but not being able to perform well because of lack of concentration due to pain and meds.

Is it better to work yourself to a more severe illness or have to quit when you first get sick? There is no answer to that. Its tough, but what you have to do is put yourself first. Part of the dificulty of this disease that in someways we feel (and definitely look) as though we're not really that sick. We don't normal die of Lupus, we just feel like we're going to. And who hasn't worked on despite feeling sick when we've had colds, viruses, etc. When you in many ways just feel like you have a mild flu, its hard to see it as a career ending illness.

So I'm afraid I have no tried and true answers for you, just know that there are many others out there with the same feelings. We really DO understand how you feel.

 

[LolaLola]

Dear Jane, Yes at the moment it does look as if life has to change. I know this is very hard and after 22 years a total way of life.
People say Lupus is a greedy illness, it seems to take everything from us.
I don't work, I am on permanent Disability. By the time it came to it I found it a blessing.
Am here to listen if I can help.
x Lola

 

[Martine Mockford]

Dear Jane

I hope and pray the Steroids work for you and you are able to go back to work but if not try and be positive and dont loose hope. My daugher was 18 and had been working in a hospital as a nursing assistant and had a place at university to study nursing and Lupus stole all that from her. She was eventually sacked from the hospital after trying to get better for 18 months and finally she had to admit defeat and because occupational health would not allow her to return to work she lost her place at university as well. It was hard at the time but she is now 21 and unable to work but has just got married and helps me with my little business as a petsitter - looking after animals - sometimes ill animals which she loves! She has now accepted she has Lupus and enjoys the good days and gets through the bad days by looking forward to the good days. She had to go through all the emotions of denial, anger and then acceptance. Serena had been on Steroids which did not work for her but it seems to help more often than not.

Please focus on the positive whatever happens.

My thoughts are with you.
xxxxx

 

[cattibby]

does my life really have to change?

Thank you all for your replies.....after reading your posts it has made me realise i am still in denial about having sle.

Thinking back over the last year i have said to my husband on quite a few occasions that i am fed up having to drag myself into work when i feel so poorly. He reminded me i also said when im having better days i want to enjoy my life and not have to work. I think im just fed up being ill and fed up with struggling to get through everyday. Sure this time of year (christmas) isn't helping with my mood as i want to enjoy my christmas and stop feeling rubbish.

I went to my own doctor yesterday and he has signed me off sick for another month, he agrees with occupational health doctor that with my current state of health im not well enough to work. So maybe i will learn to accept this illness in time, maybe i will adjust my life and start living it rather than just struggling and exisisting in it.

I am part time already and work and they have already agree to me working from home on days im too ill to go in but ok to work a little.....so i know they have been very reasonable to me....not much more anyone can do.....it's all down to how i respond to the steroids i guess.

Jane
x

 

[onetay]

Jane,

I am not sure where you work but I do know how you feel they cut my hours and I just can't do that so against doctor advise I have talked with my boss and she is slowly going to increase my hours until I am happy. It took me 3 months to go crazy. Ok have you talked with your work? Is there a chance of a flex schedule or something you could do just a couple hours a week or is that too much at this point? As long as your employer is willing to work with you and you are not willing to stop all together than you should do what makes you feel ok. Don't over do it but on days that you do feel a little better then do what you can.
My thoughts are with you.
Tammy