I'm hoping someone might have some experience here... I work a full-time job that I really like as a personal banker. The position is new to me and I am learning (doing pretty well at it). However, the job can be stressful and I have to supervise others. I am on my feet for the majority of the day and running back and forth helping others. I have recently started having to walk with a cane because my knees give way very badly and I fall down. I also get very foggy-minded and feel like I am in a stupor at times, my speech slurs and I can't really focus. This is embarrassing in front of my peers and customers. I feel as though the workload is more than I can bear. I have to give so much of myself all day to keep everything running, and no one seems to understand that I have pain. In fact I almost don't want them to... but at the same time I come home from work and crash and feel miserable. What can I do? I am not in a position to where I can quit my job. I don't want to let everyone down, but I have noticed an increase in my pain and fatigue since starting this job. I also feel depressed that I can't do everything that I want. There are days when I just wake up and really ask myself "is this a day where I can call off?". Of course I never do, but I think it all the time because I'm in so much pain... my loyalty to everyone at work pulls me through. I am starting to wonder if I am becoming disabled, and how much more I can take before I ruin my body.
Well sweetie that is something you have to deceide yourself . There is many things to condider I went through the same . I am currently 27 and I deceided this year in september to quit my job and go on disability . Now i am lucky and thankful to live with my parents so i don’t have financial responsibility . But just like you my billing job was stressing me out I came to the painful conclusion that the stress was not worth my life . 2014 has not been good on my body i was in theER at least 10 by august. I would consider all my options like appling for disability or govermental programs it is a harsh reality becuase personally for me working kept me closer to a “normal” life .good Luck and i wish you all the best
yes i believe you are somewhat disabled, it sounds like you are working your behind off..and right there KUDOS TO YOU, you are doing all this and you have lupus, oh i so wish i could do the things i used to do......have you thougoht of going out on disability ssi or social security.....lupus is one of there criteria to give ssi or social security disability no matter what your age...but i say work as long as you still can do it and like your job, but if it gets too hard dear you may have to consider going out on disability through ssi or social security disability..god bless you,, and have a happy and pain free new year.......purrs..catspaw1955
So sorry for you. I think most of us are upset because we can't do what we use to.
I'm fortunate that I don't HAVE to work. I know I couldn't
I altered bridal gown for overs 50 years Its a sense of accomplishment when you make a bride happy.. I can still do a few but not as many as I would like to. Is there a way you could use a wheel chair at work That may give you a little more energy for everything else. I know that some don't want to do that, but if it gives you more energy for some other task????
Take care of yourself. Get good medical care.
Cindy
hmm that is interesting Rachel. I don't know much about a gluten-free diet, will have to google it. i will do anything to feel better! how long have you been gluten-free?
Rachel Sara said:
This is me!! Oh my goodness thats why im going to reply. We all are different however I just want to share something MAYBE it will help. I have Lupus and went also into Fibromyalgia. I quit ALL wheat and gluten , ALL of it! No bread, no noodles, some cereals, gluten is hidden in our foods!! Now I still get some pain, but since I read my foods and went totally gluten free, I can walk better, dont get me wrong , im in pain but not as bad as I was. Something to think on we are all different. God Bless your enthusiasm and teamwork with others!!
Altering bridal gowns sounds so fun, I enjoy sewing too! I also work part-time on the weekends at a sewing shop. I have considered quitting this job, but it's a family business and I feel attached to the people there. I'm glad you are still able to do a few gowns when you can, I know sewing can make you very happy!
As far as the wheel chair... I don't know. I'm already getting questions from coworkers as to why I'm using the cane. They don't understand because some days I feel better and don't need to use the cane, then some days I can barely walk. The areas where I am have two staircases and tight places... I don't know if I could really use a wheelchair and be productive there.
freightliner said:
So sorry for you. I think most of us are upset because we can't do what we use to.
I'm fortunate that I don't HAVE to work. I know I couldn't
I altered bridal gown for overs 50 years Its a sense of accomplishment when you make a bride happy.. I can still do a few but not as many as I would like to. Is there a way you could use a wheel chair at work That may give you a little more energy for everything else. I know that some don't want to do that, but if it gives you more energy for some other task????
Take care of yourself. Get good medical care.
Cindy
To Delia and catspaw- I don't know anything about disability. How does that work? I would have to quit working altogether? And what do you have to do to even qualify and file for it? And how much do they give you to live on? I live in a modest apartment with your standard bills, I wonder if it would be enough to cover...?
Hi Zebamber
If they have staircases - they have to have an elevator. I suggest using that. My confusion improved when I stopped using artificial sweetners, and increased my Vitamin D. I recommend you have this checked when you see your doctor next time. Vitamin D deficiency mimicks other illnesses, including fibromyalgia. Take a 20 minute rest during the day, get a way from your office at lunch, at least for this and rest your mind even if you don't sleep.
Two years ago, I filed for disability. I went through a major foot surgery and I felt so awful I never thought I could work again. I went through two appeals and my hearing was set for November. I actually was able to cancel my hearing, and I've been working full time again for the past year. You will know yourself, when you can't handle anymore, and decide to file for disability.
Please let us know how you're doing.... Trisha
Hi Cindy!
freightliner said:
So sorry for you. I think most of us are upset because we can't do what we use to.
I'm fortunate that I don't HAVE to work. I know I couldn't
I altered bridal gown for overs 50 years Its a sense of accomplishment when you make a bride happy.. I can still do a few but not as many as I would like to. Is there a way you could use a wheel chair at work That may give you a little more energy for everything else. I know that some don't want to do that, but if it gives you more energy for some other task????
Take care of yourself. Get good medical care.
Cindy
I have never applied for Sovial Security disability or other disability myself, but went through the process with a son. Call your social security office and ask for an appointment. You will probably qualify for other state or federal assistance as well.
As to how much you will make, you may ask the person who interviews you during your appoinent. My son and I didn’t ask that question when we were there.
Bottom line: It is intended to keep disabled people from being homeless and without food. It most likely will not give you the income you make at your bank. It is a step people take as a last resort.
Hi zebamber
My daughter is on SSI. It took 8 months to get approved. That's something you may have to think about. You may have to get ahead, financially before you make that move.
I have altered bridal gowns for 54 years. When I retired at 68 I was so bored I bot a small shop where I had consignment formal wear and I did alterations. I can't tell you how I enjoyed that. I was diagnosed with SLE 3 1/2 years ago. I had to give up my shop 9/13 due to fatigue. I miss it. I hate not being able to do what I what.
What kind of sewing shop do you work for. I bet that's easier on your body than your full-time job.
Cindy
This hits home for me too, in many ways. I'm a college proessor and it's very hard to get through the day and all my appointments. The worst thing is all the work that must be done at home: grading, writing out lectures, setting up homework etc (and raising two older children).. I have not been full-time for over a year now and I'm so stressed about this being possible when I go back in a few weeks.
We do not have an elevator at the building unfortunately :( I will look into the Vitamin D though that sounds like a good idea!
The sewing shop is actually less stressful but also more work on the body because I have to stand for 9 hours and we really don't get a lunch. So that one leaves me completely wiped out too!
Thanks for the tips on SS, hopefully I won't need it immediately but it's good to know the process. It sounds like if I did that I would have to end up living back with mom and dad to make ends meet... does anyone live on their own on social security?
Wow @Rachel that is crazy how you can see such a difference when you are eating gluten! Do you use any good sites for recipes?
I would only work part time. Get yourself better. Paleo diet more raw vegs baths and sleep. U dont wanna damage anything if your struggling im sure theyll understand try curcumin. Saves my life when i cannot make it
Here’s what I think, you have X amount of energy, and if you use more than that amount, which I do on a regular basis, you get sick. It I eventually caught up with me at my last job, and they decided I was too sick to work and let me go. As my energy decreases, due to my lupus, it has become harder to do almost everything. I wet to see a friend for a wee at Thanksgiving, and it exhausted me so much that I was having severe dizzy spells whenever I stood up toward the middle of the visit and slept all day for about a week when I got home. I suggest you start the disability process, it takes a while to get. For Social security and disability, you need 40 units to qualify, so check that out by calling them. How much they pay you is based by time worked an amount of salary. You can apply for disability but the go back to work if you go into remission (and they stop paying ss)
I suggest you start thinking about asking for a physically less damaging job within the company or somewhere else. I know that’s not what you want, but you are going to eventually end up really sick, and it’s way better than being fired. Lupus forces you to start making choices about things you don’t want to change. You are already collapsing at work, and it doesn’t mean you are a failure at what you do, it means your body is failing. It is sad to be limited by your body. I think you need to tell your doctor about this, especially about the collapsing. The doctor will probably be supportive of you, but might find some way to make things better.
I'm glad a gluten free diet has helped some people but I have a celiac gene and a documented allergy to wheat and still the change without is not that remarkable. It won't hurt for you to try a gluten free diet but it is not a spectacular difference for everyone even when medically indicated.
Rachel Sara, I fully believe it did help you and I am VERY glad about that. I'm not trying to discourage you from posting. I just want people to know that it works for some people (like you) and not for others. I just don't want them to get their hopes up just in case. I'm really sorry you feel discouraged to post because I did not mean to do that at all. Please keep posting. I know LOTS of people who are helped by changes in their diet and I really do think that's great! (I did say in my post that I'm glad it helped some people but it's not for everyone and I'm sure that's true for almost anything!)
Lynn
Rachel Sara said:
Lynn I only told MY story, thats why its difficult to come to this site is because when I at least TRY to give my input on something, people like u all the time discourage me from posting. I will keep all my opinions to myself as now im really discouraged to come on here
I really do feel badly that I made someone feel badly by stating what my story is. I think we both were very clear that we were talking about ourselves and that each person's experiences are different. To Zebamber who posted the original query, I hope you find something that works for you. You were given good suggstions to try and I hope that something helps. As someone going back to work after not being full time for a few years, you definitely have my sympathy. In my case, I'm trying to hire someone to help me at least with grading.
Thank you Jane, I find your comment to be pretty straightforward and realistic. It really made something "click" in my head. But I do have one question, you said you have to have 40 units on SSI... I have no idea what units are!
to Rachael and Math, I appreciate both of your points of view and will take this into consideration. I read that the gluten-free diet can help lose weight too, which might not be bad for me to get rid of a few pounds (might help with joint pain...?)
Jane S. said:
Here's what I think, you have X amount of energy, and if you use more than that amount, which I do on a regular basis, you get sick. It I eventually caught up with me at my last job, and they decided I was too sick to work and let me go. As my energy decreases, due to my lupus, it has become harder to do almost everything. I wet to see a friend for a wee at Thanksgiving, and it exhausted me so much that I was having severe dizzy spells whenever I stood up toward the middle of the visit and slept all day for about a week when I got home. I suggest you start the disability process, it takes a while to get. For Social security and disability, you need 40 units to qualify, so check that out by calling them. How much they pay you is based by time worked an amount of salary. You can apply for disability but the go back to work if you go into remission (and they stop paying ss)
I suggest you start thinking about asking for a physically less damaging job within the company or somewhere else. I know that's not what you want, but you are going to eventually end up really sick, and it's way better than being fired. Lupus forces you to start making choices about things you don't want to change. You are already collapsing at work, and it doesn't mean you are a failure at what you do, it means your body is failing. It is sad to be limited by your body. I think you need to tell your doctor about this, especially about the collapsing. The doctor will probably be supportive of you, but might find some way to make things better.
LynnMath OMG you just told my story! I am in the process of applying for disability because my employer has demoted me due to some of the issues resulting from lupus. My memory is so bad I miss meetings, misplace things and forget to do things I need to do. The worst is making up tests and finding out inspite of rechecks that I still have duplicate questions or typos! I wrongly assumed my employer would understand that the issues I have are secondary to Lupus, but of course the bottom line is the consumer and profit 
LynnMath said:
I really do feel badly that I made someone feel badly by stating what my story is. I think we both were very clear that we were talking about ourselves and that each person’s experiences are different. To Zebamber who posted the original query, I hope you find something that works for you. You were given good suggstions to try and I hope that something helps. As someone going back to work after not being full time for a few years, you definitely have my sympathy. In my case, I’m trying to hire someone to help me at least with grading.