Do any of you ever, just feel bad? Some days, its like everything on me hurts and I just feel like a slug. I find it so hard to make it through a work day when I'm feeling like this and I know my coworkers think I am just plain lazy. My rheumy completed intermittant medical leave paperwork for me, but I have so much to do.... I just don't think I can. I don't want to feel like I'm giving up, but I have just felt so bad lately, that I'm afraid something really bad is going to happen to me, while I'm working. I don't even always know how to descibe how I'm feeling. Sometimes when I'm listing all the symptoms I've had in one day, I get looks like I'm crazy. It's so much easier to just keep it to myself and hang on for a better day.
OMGoodness!! I could (and have) said these exact same words!! I absolutely know what you are saying. I almost never tell anyone all of my symptoms because it is just easier to say "I'm not doing too bad"!!
I almost cringe whenever someone asks how I'm feeling or how I'm doing because I almost always just wanna say "fine, how are you?" Just so I can feel "normal" and its all just very sad and lonely. My saving grace is just that I don't have to work therefore the physical demands on me are manageable and I don't have to be in social situations much at all so I feel bad for my fellow Lupies who aren't so fortunate which is also why I almost never write anything on here because I think 'how can I dare to complain..I am blessed with a husband who adores me and tries his best to be supportive. I don't have to work outside of home and we are financially comfortable' so as I read some of the things that others are going through I just feel so bad for them and guilty for feeling sorry for myself! I apologize..I guess I just needed to get all of that out! Please just know that you aren't alone in your plight my dear. Bless you.
This is what I call the good day- bad day syndrome I got through them but reminding myself that I was not critically ill in the hospital and altho I feel rotten I am still able to get out of bed and get around, albeit unhappily. Our path is not an easy one
Believe me, you most certainly are not alone. My constant thoughts are to take one day at a time. Each day is a gift, and do your best to see the beauty in life. Simple things, a sunny day, a talk with a friend, laughter and smiles from people around you. It is very, very difficult . You will find your way. I will pray for you. You need to surround yourself with a good support group. Joining this web site is a good beginning.
You are definitely not alone some days I forget I have lupus and I’m always wondering is every ache or pain a symptom or is it just the fact that I’m aging (62). I do my best to count my blessings everyday. I think a lot of what goes on with me is depression and anxiety. Never knowing how I’m going to feel. That’s 1 reason I stopped working last week and decided to collect soda and my boss offered me part time work which will help me to feel good about myself. Let’s pray for each other maybe tomorrow will be better
Most of my days are like that. I'm on a disability retirement because I worked myself to the point of exhaustion and was too sick to do much of anything. Now, it is one day at a time and I only do as much as I'm able.
Lori
You have discribed my life. I always answer the how are you with ‘Fine, and you.’ By the time I get home I can barley move and just want to crash. I have to nap on weekends between housework. I keep a symptoms journal and I even think I am nuts when I look at it.
Hang in there, there will be good days too!
Thank you! This site has been such a blessing to me since I became a member. It helps so much, just to know that there are other people like me (noth that I'd ever want anyone to go through what Lupus does to you).
Kaykay said:
OMGoodness!! I could (and have) said these exact same words!! I absolutely know what you are saying. I almost never tell anyone all of my symptoms because it is just easier to say "I'm not doing too bad"!!
I almost cringe whenever someone asks how I'm feeling or how I'm doing because I almost always just wanna say "fine, how are you?" Just so I can feel "normal" and its all just very sad and lonely. My saving grace is just that I don't have to work therefore the physical demands on me are manageable and I don't have to be in social situations much at all so I feel bad for my fellow Lupies who aren't so fortunate which is also why I almost never write anything on here because I think 'how can I dare to complain..I am blessed with a husband who adores me and tries his best to be supportive. I don't have to work outside of home and we are financially comfortable' so as I read some of the things that others are going through I just feel so bad for them and guilty for feeling sorry for myself! I apologize..I guess I just needed to get all of that out! Please just know that you aren't alone in your plight my dear. Bless you.
That's it, exactly!
poobie said:
This is what I call the good day- bad day syndrome I got through them but reminding myself that I was not critically ill in the hospital and altho I feel rotten I am still able to get out of bed and get around, albeit unhappily. Our path is not an easy one
Thank you so much! You are right. Joining this site has been such a blessing for me. Especially on those days, when I feel like I am alone in my Lupus journey, when I don't understand what's happening to me, and when I feel like no one else understands...I know the people I've come into contact with here definitely understand...and that means so much!
Barbara said:
Believe me, you most certainly are not alone. My constant thoughts are to take one day at a time. Each day is a gift, and do your best to see the beauty in life. Simple things, a sunny day, a talk with a friend, laughter and smiles from people around you. It is very, very difficult . You will find your way. I will pray for you. You need to surround yourself with a good support group. Joining this web site is a good beginning.
Thank you so much! Yes, we will pray for one another and think ahead to (hopefully) many better days. :)
fearful said:
You are definitely not alone some days I forget I have lupus and I'm always wondering is every ache or pain a symptom or is it just the fact that I'm aging (62). I do my best to count my blessings everyday. I think a lot of what goes on with me is depression and anxiety. Never knowing how I'm going to feel. That's 1 reason I stopped working last week and decided to collect soda and my boss offered me part time work which will help me to feel good about myself. Let's pray for each other maybe tomorrow will be better
I keep getting told that my job is making me sick. I am trying to be determined and hang in there until I reach 20 years, but that is another 3 1/2 years for me. I just don't know if I can. I get so mad at myself, though, when I think about those people who said I couldn't do it...my old boss used to say "It must really be horrible to be you"...that makes me want to hold on for as long as I can. On the other hand, I have two beautiful daughters, who deserve to have their mother around. It's a tough place to be! Hang in there! :)
loriken214 said:
Most of my days are like that. I'm on a disability retirement because I worked myself to the point of exhaustion and was too sick to do much of anything. Now, it is one day at a time and I only do as much as I'm able.
Lori
I feel your pain. I worked for 18 yrs after diagnosis but it all became too much. I went down to PT to 30 hr a wk to keep my insurance but even PT I was sick a lot of the time. Eventually I had to quit & go on permanent disability. I've done much better because I can nap if I need to & pace myself so I don't get over tired. Talk to your Rheumatologist & decide what works better for you. There's no shame in taking care of yourself. I was on short term & long term disability many times before I had to finally stop working. The feeings you are havng are part of having Lupus. Everyone on this site has probably experienced many if not all of them. Good Luck to you
i agree with others you are not alone. The hardest part is about missing work...which i can relate to completely. Can you work from home? I could part of my job so that did help but mainly i needed to be at my desk.
Here is what i did, i set a limit on how sick i could get at work before i had to leave. I did get very sick at work one day and after that, both my boss and coworkers and asked that i leave before i got that sick because it was so upsetting to them. So if i felt bad before work but it was kind of day..I would go but if in few hours i was feeling a lot worse, i usually go home.
As to working..can you work from home at all? I could a bit so that helped. My doctors all agreed that working was very important to people's self esteem and just having purpose in life...especially if you had a job which you enjoyed and i did.
So when things got where i felt kind of bad all week and on weekends had to rest or felt sick ...and it went on like this for months...first my doctor signed me off for like week's rest. It did help but eventually, i got where i just was back to feeling too exhausted all weekend so i never caught up basically. At this point, after speaking my doctor, husband and boss, we all agreed i go down a day to part time.
That did work for me even though i would work full time often during the busy time but also was able to take more time off if slow or needed it here and there. That worked really well for about 5 or 6 years...and i went down to one more day...which lasted until i finally just could not work...this was after much heavy thought and my doctors pushing me to stop. I realize now, if i had pain medication, i might have been able to work a good few years longer at least but now knowing what i know about narcotics...it would not be good due to negative side effects of them. Biologic s were not yet out or they might have helped...or some other kind of drug that would have helped with pain/fatigue. I was getting massages weekly to help which did greatly.
There is another site that you can keep ongoing journal about how you feel, pain levels and other health issues which might let you see if there is a pattern or are things truly getting worse...plus space to say what or how you feel. It is called Live Journal and i think the tools they offer are very useful...especially since you can let your doctor access it if you like them to see how you are doing and feeling.
Just try to not leave too soon....take your time, go part time if possible. Speak honestly to your boss or higher...i was surprised after speaking to my company's CEO, for another reason than about myself and health, that his sister has SLE and he was not aware that I had it as well..he just knew i was sick somehow. After that talk, he had a lot of respect with me he always said knowing how hard his sister had working too. So you just never know who is going to relate to you!
Eat well, rest...go to bed early even on weekends if you feel sleepy. My 1st rheum said take naps..and he is right . BUT most of all do things that bring you joy and happiness even if it causes more physical pain it will be worth it!! OH exercise...that gave me more energy working out daily.
I hope you can keep working as it really does help you to feel better if you like your job...if you do not like your job start looking for one you might. But try to keep working until your doctors without you asking them start saying i think it is time you start considering not working. And they will...when they see your body signs and your spirit not doing well.
good luck...hope you can maybe work from home or go part time if you need too.
Wow…I’m new to this site still and I’m amazed at how much in common we all have! Things that our closest friends and family may never fully understand!
I am a type A workaholic, who has always defined myself by my successful career and hard work. I should have defined myself as a loving wife and mother, but I digress. I love my husband and 9 yr old son, more than anything, and I had been told by my Rhuemy to go on STD. I felt like a failure if I did, so I have fought the idea, until now. I have no choice. My treaments are not working and I start Methotrexate tomorrow (any info on this medication would be welcomed and greatly appreciated?!)
I am now going on STD and I start Yoga and Meditation tomorrow, per my MDs orders. I realized that I’m crazy to even thing about not taking my MDs orders/advice because I will never get this time back to make time in the future for my family! They are my priority! I also need to make myself a priority too! I’m hoping I can really try to de-stress and heal during this time. Nothing is worth my health, and lack of quality time with my only son and husband. Here’s to relaxation and getting better for me and my family!! I am not going to see those labs digress again!! Best wishes to all!
I feel like that some mornings, I just don't feel well, and wonder how I'm going to get through the day.... When I get home from work, I rest, and sometimes I just go to bed. Usually I feel this way after I've done too much over the weekend and haven't gotten the rest I need. I think its ok to allow yourself to just 'feel bad'.
I also keep a symptom journal and I feel the same way when I look back at it. ...and I always say I'm okay, even on really bad days. I even had a hard time with it the last time I was in the hospital. The nursing staff just knew that there was no way I was rating my pain level accurately. Thank you for your reply and please take care.
McMommy said:
You have discribed my life. I always answer the how are you with 'Fine, and you.' By the time I get home I can barley move and just want to crash. I have to nap on weekends between housework. I keep a symptoms journal and I even think I am nuts when I look at it.
Hang in there, there will be good days too!
I completely agree! :)
Trisha said:
I feel like that some mornings, I just don't feel well, and wonder how I'm going to get through the day.... When I get home from work, I rest, and sometimes I just go to bed. Usually I feel this way after I've done too much over the weekend and haven't gotten the rest I need. I think its ok to allow yourself to just 'feel bad'.
Thank you! Please take care of yourself. :)
OllieVy said:
Wow...I'm new to this site still and I'm amazed at how much in common we all have! Things that our closest friends and family may never fully understand!
I am a type A workaholic, who has always defined myself by my successful career and hard work. I should have defined myself as a loving wife and mother, but I digress. I love my husband and 9 yr old son, more than anything, and I had been told by my Rhuemy to go on STD. I felt like a failure if I did, so I have fought the idea, until now. I have no choice. My treaments are not working and I start Methotrexate tomorrow (any info on this medication would be welcomed and greatly appreciated?!)
I am now going on STD and I start Yoga and Meditation tomorrow, per my MDs orders. I realized that I'm crazy to even thing about not taking my MDs orders/advice because I will never get this time back to make time in the future for my family! They are my priority! I also need to make myself a priority too! I'm hoping I can really try to de-stress and heal during this time. Nothing is worth my health, and lack of quality time with my only son and husband. Here's to relaxation and getting better for me and my family!! I am not going to see those labs digress again!! Best wishes to all!
My agency won't allow the work from home option, but I have been discussing potential ADA accomodations with an EEO counselor for the agency. I have had a really hard time with this and have felt somewhat betrayed by the agency I have worked for for almost 17 years. They demoted me about six months ago and insisted that I speak with the EEO counselor. I asked him who he was an advocate for, me or the agency. He told me that his job is to help me keep mine and he is also to make sure the agency is fair to me in its expectations of me and treatment of me in relation to my illnesses. I have been really stubborn in the past about leaving work when I should, when I am sick. The last two years has been really hard and stressful. I have been in the hospital three times. My boss, during those times really made me feel awkward. She would say things like, "It must be terrible to be you...I can't imagine having a job that makes you sick". She really didn't seem to have a good understanding of how autoimmune disorders work. Not that I would wish any of this on my worst enemy, I just wish she would have had a better understanding. Anyway, she made it her mission to demote me from my supervisory position. So, now, after six years as a supervisor, I am back in the field. Initially, I was doing well, but I am starting to get back into some old habits, like not taking care of myself. My rheumatologist would not fill out the ADA paperwork, because she sensed that my agency was trying to limit me, or get rid of me. So, she completed intermittant family medical leave paperwork instead, so that my job will be saved, in the event I need to take unpaid leave. I also have the option for retirement disability, but it would significantly decreased my income and I just don't think I ready for that, yet. Thank you so much for your reply. I hope you are doing well and continue to do well! :)
siskiyousis said:
i agree with others you are not alone. The hardest part is about missing work...which i can relate to completely. Can you work from home? I could part of my job so that did help but mainly i needed to be at my desk.
Here is what i did, i set a limit on how sick i could get at work before i had to leave. I did get very sick at work one day and after that, both my boss and coworkers and asked that i leave before i got that sick because it was so upsetting to them. So if i felt bad before work but it was kind of day..I would go but if in few hours i was feeling a lot worse, i usually go home.
As to working..can you work from home at all? I could a bit so that helped. My doctors all agreed that working was very important to people's self esteem and just having purpose in life...especially if you had a job which you enjoyed and i did.
So when things got where i felt kind of bad all week and on weekends had to rest or felt sick ...and it went on like this for months...first my doctor signed me off for like week's rest. It did help but eventually, i got where i just was back to feeling too exhausted all weekend so i never caught up basically. At this point, after speaking my doctor, husband and boss, we all agreed i go down a day to part time.
That did work for me even though i would work full time often during the busy time but also was able to take more time off if slow or needed it here and there. That worked really well for about 5 or 6 years...and i went down to one more day...which lasted until i finally just could not work...this was after much heavy thought and my doctors pushing me to stop. I realize now, if i had pain medication, i might have been able to work a good few years longer at least but now knowing what i know about narcotics...it would not be good due to negative side effects of them. Biologic s were not yet out or they might have helped...or some other kind of drug that would have helped with pain/fatigue. I was getting massages weekly to help which did greatly.
There is another site that you can keep ongoing journal about how you feel, pain levels and other health issues which might let you see if there is a pattern or are things truly getting worse...plus space to say what or how you feel. It is called Live Journal and i think the tools they offer are very useful...especially since you can let your doctor access it if you like them to see how you are doing and feeling.
Just try to not leave too soon....take your time, go part time if possible. Speak honestly to your boss or higher...i was surprised after speaking to my company's CEO, for another reason than about myself and health, that his sister has SLE and he was not aware that I had it as well..he just knew i was sick somehow. After that talk, he had a lot of respect with me he always said knowing how hard his sister had working too. So you just never know who is going to relate to you!
Eat well, rest...go to bed early even on weekends if you feel sleepy. My 1st rheum said take naps..and he is right . BUT most of all do things that bring you joy and happiness even if it causes more physical pain it will be worth it!! OH exercise...that gave me more energy working out daily.
I hope you can keep working as it really does help you to feel better if you like your job...if you do not like your job start looking for one you might. But try to keep working until your doctors without you asking them start saying i think it is time you start considering not working. And they will...when they see your body signs and your spirit not doing well.
good luck...hope you can maybe work from home or go part time if you need too.