I have just seen another post describing trouble waking up in the morning.
I am sure that we can all relate to this however not only do I struggle getting up in the mornings, I struggle throughout the day, EVERYDAY.
I am experiencing pain from joints, stomach, skin and just generally aches and sores but at least they can be dealt with by taking painkillers and other medications. –
In my opinion there is nothing worse than hearing somebody without the condition complain about being ‘exhausted’ – there is absolutely no comparison to the tiredness that is experienced with conditions such as Lupus. (although most people fail to recognise this when you say you are too tired to do something)
At the moment I am in full time employment (37 hours a week), completing a degree outside of working hours and also trying to keep up with the social life of a ‘normal’ 19 year old.
My manager is pushing me to work additional unpaid hours to as he puts it ‘advance in the company’ and develop the role am currently in.
My question is… What do I do ???
Do I push myself to work additional hours in order to get on In the company or do I simply refuse on the terms of having SLE ?
I know this is a battle I am going to face my whole life and therefore I need advice on the best way to approach this situation.
I know exactly how you feel. There is nothing worse than listening to people without Lupus complain about being tired etc. I get a lot of crap about that from my co-workers. I am working a full time job 40+ hours, and I also had a part time overnight job until recently. I didn't want to let the disease get the best of me, however I have had to learn to deal with my limitations. I have to quit the other job, but at the same time I don't want the SLE to control my life. My best advice would be too keep going the best you can, but also do not push yourself too much. That is only going to make you worse. You will have to except slowing down on certain things but do your best to keep on going the best you can. It's not easy but have faith in yourself!
Wow, Bethany, you most certainly have a lot on your plate, even for a healthy person. I remember as a college sophomore (when I was 19), I went to school full time, worked two jobs and ran on the cross country/ track team and I was exhausted (and not sick at the time.) so I admire you for doing all you are doing. As far as your job is concerned, I would ask myself a couple of things: first, is this a job where you see a long term career for yourself? If so, it may be worth the commitment of a few unpaid hours. If not, simply explain to your boss that you are in school, etc., and do not have the extra hours to commit to the company right now. Many employers want their employees to further their education as it benefits everyone. I don’t see any need to reveal that you have SLE if you don’t want to. I would also consider the detriment it will have of your health to push yourself even harder. If you work extra hours, will you miss other, regularly scheduled work days because you are too tired or you are too ill to work? And, last but certainly not least, you are 19 years old and you only get to be a young adult and get to live like a 19 year old once. Socializing is an important part of growing up and you don’t need to miss out on that (dating, etc.) I know I sound like an old lady (because I am- 49 and counting) but these things are all worth considering. I missed out on a lot when I was your age because I never had time to do anything fun.
I really get what you said about hating when other,people say how tired they are. My husband does it all the time. I feel like screaming at him to stop staying up all night drinking and then he wouldn’t be so tired but it would just get him angry and wouldn’t change anything and I would be the one to suffer. I also get tired of him saying “my shoulder hurts” or “my back hurts” or whatever. Mostly he does this when he doesn’t want to do something. I wouldn’t want to wish my level of pain on anyone but if he could just experience it for one day, maybe he would shut up about it.
I hope that you can find a good solution to your dilemma. Hope you have a wonderful day!
You are the only one who can decide for you i pushedmyself for several years went from 2 meds to several i wished i had done things defrently i am currently out on fmla leave and Will not be going back try making a list of the pros and cons is it a company you would be with a long time why do you have to do this without pay i hope you can decide what to do important sorry if i left you ore confused
I agree with the comments you've received here, some good advice. I'm not sure how long you've worked there, or what the expectations were when you began concerning your hours? I'm a private person, and I wouldn't tell an employer about my lupus. I'm in a job search myself and something my job coach and I are discussing. You need to take lupus out of the equation and decide long term what is your priority - your degree or this job? Assuming its your degree, you just explain to your boss that you have a difficult school schedule and you need to concentrate on this.
You are going to have many jobs in your lifetime - I think the average is now 15.
I feel for you. It is illegal to ask you to work off the clock. That being said that may not help you if they find another reason not to promote you or worse, fire you. I know about the fatigue, but I am fortunate not to work full time. I have a small shop where I sell consignment formal wear and I do bridal party alterations. I am in the process of closing my shop. I will still do alterations out of my home. I am 72 and I have worked all my life and I don't want to stop. The fatigue won't stop me but unfortunately it will slow me down. I guess you have to find the best way to manage your time. Always hear to talk to (or vent to).
I would not tell the boss either about your lupus. I also wonder if he is looking out for your welfare or his? Unpaid work to advance in the company or is it so he looks good and he can advance in the company? I don't mean to sound negative but I have been there and my husband has and I have watched many other people go through this also. We are retired now and I don't see companies getting better about this at all. You need to take care of yourself and look at your long term goals. Are you planning on staying with this company after your degree? Lots to think about. I wish you the very best.
Don't feel like you have to keep pushing. You may end up not able to work at all. That is what happened to me and my teaching career. I remember stumbling into work, barely able to make it on time and hurting so bad I began using a cane. Be careful and try in any way you can to take care of yourself. :)
I know how you feel, I can remember a time from doing things and then getting tired and worn out, now when you have to start out that way and then feel as most people look at it as all of us get tired. I still long for those days of getting tired while doing something instead of getting up and already being so fatigued that you push to just go. I work in a 12 hour rotating shifts in Maintenance and can really relate to the demands that our work can place on you. When something is not running making them money the demands and stress can drive you crazy. I have not found that there is just a simple answer to this question, we strive trying to not let the sickness define who we are and shape and make our lives, but with the demands of work and family we sometimes have to come to terms with that we have to realize that we have to know when enough is enough and set a few limitations. Boy isn’t that easy to just say but I am guilty of not doing this working 25 plus hours on things and then paying for it for weeks, worrying about all the things and that everyone is looking to you and feeling as though you have too cause it is what everyone needs. I wish that I could give you a better more defined out answer as to how to handle this but I am still trying to find and search out the middle of the road to this question too. I just hope that it helps you to know that there are us out here that understand just where you are coming from. I hope that it helps in saying stay strong try not and push yourself to much and keep the faith as we fight together this that tries to defeat us. Best of luck.
Please do not over exert yourself. With lupus we must learn to listen to our bodies. Is your boss aware of your lupus? I am a nurse and last year I obtained my BSN on line while working full time. I lost weight and lost more hair. I can certainly understand the struggle. Please take care of yourself. Be blessed.
JayNicole, what a great response! I couldn’t have said it better myself! For the better part of 10 years I always told myself I am not going to let Lupus run my life! I had to be tough on myself and not give into the demands of lupus! And then one day I found myself in trouble and I had to Come to terms with the fact that I could no longer work! I don’t work however I do try to stay busy but on the days that I can’t at least I know that I don’t have to go anywhere!
JayNicole said:
I know exactly how you feel. There is nothing worse than listening to people without Lupus complain about being tired etc. I get a lot of crap about that from my co-workers. I am working a full time job 40+ hours, and I also had a part time overnight job until recently. I didn’t want to let the disease get the best of me, however I have had to learn to deal with my limitations. I have to quit the other job, but at the same time I don’t want the SLE to control my life. My best advice would be too keep going the best you can, but also do not push yourself too much. That is only going to make you worse. You will have to except slowing down on certain things but do your best to keep on going the best you can. It’s not easy but have faith in yourself!
My hairdresser suggested to use Mane and Tail shampoo. You get it in the pet dept at Walmart. She said her daughter uses it. I tried it and it made my hair thicker and it has filled in some o f the bald spots but my hair is so thck now that you can't see the bald spots. Congrats on your BSN.
Sonja said:
Please do not over exert yourself. With lupus we must learn to listen to our bodies. Is your boss aware of your lupus? I am a nurse and last year I obtained my BSN on line while working full time. I lost weight and lost more hair. I can certainly understand the struggle. Please take care of yourself. Be blessed.