I have always thought that if I “give in” or accept the Lupus then I would be accepting failure. I grew up in a family where an excellent work ethic was revered. In our family it was all about the work and the accomplishment one achieved from “doing”. I am a mother of two teenage sons and I have an active social life. I also have my own small business. When I am in a flare it seems as if all I am and do justs falls away. I have nothing tangible to blame because it is not like Lupus is a him or her or even an it! I wind up hating and blaming myself. I do not know how to get out of this cycle, I have been going through it for 25 years! I know it does not help me and probably makes things worse i just don’t know what to do with these feelings of failure. When I start feeling better I always feel like I am in a rush to catch up. Does anyone relate to these feelings?
Yes. I feel the same way. I’ve been out of work 8 months, in fact I’m out for good. I’m in therapy for it. It’s not anyone’s fault
For the sake of your health---long-term and short-term, you should try VERY hard not to let others define how you feel or your value as a person. My problem is that when I feel good, I go like a bat-out-of-hell and then I'm in bed for days; I am always working on pacing myself and usually without success. I've probably had Lupus for over 20 years but wasn't diagnosed until 2006. Oh, the cruel comments I have heard! EXAMPLES: "Why don't you go live in a home with others who are like you? Is it that you don't feel like going (out to lunch, movies, whatever) OR do you just not want to go? There is a lady with Lupus on my street who is 32, and she has the red face but is doing great other than that." I print short articles (some from Lupus Today magazine but most from this website), and mail them to people with a note---that says something like "Probably you have never known many people with Lupus, and I thought you might find this of interest as Lupus is a hard disease to understand." You say "nothing tangible?" How you are feeling is tangible! Radio-waves are not tangible, but we know they exist! Also, there are some people who, for some subliminal reason, tend to verbally and emotionally jump on people who are weaker than themselves. It's almost like the most detrimental, primal, subliminal behavior we carry as humans. Many times, the worst comments come from those we love the most. Hopefully you can train them to expect less from you at times. If they don't learn, you must take care of yourself, as if you don't your flares can get progressively worse. I worked all my life (from 20 to 56) and I'm 61 now. My social life dwindled after I was forced to quit working, wasn't reliable so I quit making commitments that couldn't be rescheduled without anyone being mad, and didn't have any extra money to socialize. Jamin' Girl, I hope this helps a bit. Stay strong in your "Lupan" journey. Lupancatwoman Gail
Recently my husband has told me he was tired of me being sick and he is tired of hearing about every pain I have.
I feel like I am failing at work, home, and church.
Hi Poags, I know exactly how you feel. I have stopped telling my husband when I hurt even when he directly asks because I get sick and tired of hearing MYSELF saying that I hurt and don’t feel good and on and on. I have gotten to the point where I just keep to myself so I don’t have to inflict my pain and suffering on anyone else. Not healthy, I know, but it is my way of dealing.
Jammingirl, this is the most common problem of adjustment to a chronic illness. I have heard your same complaint from so many, I'm sure there have to be books written about it somewhere. It's especially hard if you grew up in a Christian "work before play/don't waste a minute" mentality. It IS ok for you to slow down, and I think its actually necessary to take time to heal or rest when you need to. Chronic illness is probably a fast track course to the virtues of being the best human we can be. Compassion, patience, longsuffering, spirituality, kindness, seeking a higher power/God, and humility can probably not be learned in our short 80 years unless we do have the "time outs" that chronic illness brings. Think of it this way. Do you respect a 75 or 80 year old grandma any less because she has had to slow down due to fatigue and pain? She seems to have gained wisdom and patience through it, right? Well, our bodies are functioning less effeciently, but much earlier than we planned. It is not a crime or a sin to go a bit slower or take breaks. in Fact if you DON'T take care of yourself, you might put yourself into the hospital again and again, like I did, then I had to get a second job to pay the hospital bills, then I got sicker, ended up in the hospital, got another job to pay for another bill, and on and on it went until I learned to slow down and be more patient with myself. Self-talk and what you say to yourself needs to completely change. The things you tell yourself "you lazy so and so" or whatever, are words you would never even say to your enemies, but we do it to ourselves all the time. It's time for you to adjust to a "new kind of normal." It's a moment by moment learning process and will take time. But you can learn peacefulness in the process.
I had a hard time at first excepting my "new" self. I was thinking I am 20 I should be helping my mom not my mom taking care of me and having to pay all the bills. I am finally starting to accept it for what it is now. I have my good days and bad days. My lupus has left me in a wheel chair for long distances, it was really hard to except but I now in a way find it a blessing. People tell me all the time that they wouldnt even want to be in one. But for me it has allowed me to still have a life. With it I am able to go shopping or have a friend push me for walks, as well as still be able to attend college.I still have hope for it changing one day, but until than I am learning to live my life for now. I am still trying to remind myself that even though I am having a good day not to push as then I am laid up for several days.
I know the feeling. I have started talking to myself the way I would talk to a friend. I try and be nice to myself.I would never tell a friend the things I tell myself. I wouldn't be too hard on someone if they were in my shoes. I actually never knew I was that hard on myself until I got Lupus. So I just have to treat myself like I would treat others. Does that make any sense? Its not easy to do really...but what choice do I have? You know what I mean?
Jammingirl,
I don't think there is anyone here that hasn't felt that way. When meeting new people what do you answer then when they ask (and they all do) "so what do you do?". There was a time when this was not even a question that was directed toward women.
I was a teacher, worked for Medicaid, and worked in the investment field. Then I hade a series of TIA's and strokes and my short term memory is shot.
For 6 months I sat around feeling sorry for myself (and still do on occasion) but then remembered how much fun and how good I was as an artist in various mediums. So now the answer to that is I am an artist and a moderator on a wonderful website for lupus.
That said, although you may not be able to do the things you used to do, you have value. You ARE important and you DO have something to contribute. It's up to you to find out what that is...in my case I am able to make a small living with it as well as feel worthwhile.
Find your joy and it will find you.
XOXO,
DeAnne
Oh my goodness … after almost 30 years I still struggle with these thoughts & feelings every day. To the point that I also have to acknowledge that I also suffer from the ugly face of denial. Asking myself if I just haven’t been lazy or dumb. Then i just have days like the past week when i have been ravaged by so much pain I just know it can’t be in my head. I have spent. Up to 3, 4 months in hospitals in New York City with some of the best doctors … been in nursing homes up to six months and home nursing care, They dont allow that and medicare doesn’t pay for that for lazy people. But our minds can convince us of just about anything.Especially when you’ve grown up in a proactive productive environment.
it’s a daily struggle that i think is exhasperated by a society that doesn’t see the symptoms and medical professionals that are still stumped by such an insidious disease.
Healing hugs to you…~Maré
Having had to leave my profession many years ago, it was easier to adjust to being SomeBody, and now being SomeBody Else. When you stay in a career, trying to maintain SomeBodiness can be crazy making.
I am on my second marriage. This Hubs is bipolar. He knows full well how prison or death awaits those who go off their meds - and he knows he gets quickly non-compliant unless supervised.
When he complains because my lupus makes me "difficult" for too long; I tell him to just dump me then die.
He always stops complaining. Being medically co-dependent works for us.
Regards from Rosie
I am so lucky that my friends and family have always stuck by me. My sisters have multiple health problems but not lupus. I have friends that are very healthy and others who have problems now too. I think all of them have realized that they too could have severe health issues at any time. I'm not sure how I have been so lucky but I have good friends that I have had since high school (I am almost 66) and new ones too. BUT my attitude has always been one of accepting people as they are and if others can't be that way then I lose those people. After saying this I will say I don't think this comes because of me alone....I sincerely believe this is my life gift from God or a higher power if you think in those terms. I know that I am very lucky in this. I also have found myself repeating over and over for the last 20 years or more to "let go and let God". My sister is a AA member and she told me this when I was going through a very rough patch and this has helped me so much. If I stop trying to control my life and instead let God control or rather lead me then I do much better. This is not easy all the time and I don't pretend it is and I have had many, many days where I have to say this over and over and over to myself but it never fails. I wish you the very best and keep talking here. It truly helps. Gentle hugs, Reet
I don't have anyone.
What do you mean by this? You have no family or friends or what? Go online to Color of Lupus Nevada or Lupus Support Group Las Vegas and there are others if you just type in lupus groups in Las Vegas. Maybe you are a part of these groups or one of them but if I read this right then please get in touch with one of these groups and I am sure you will find friends and support.
Gentle hugs! Rita
whathappensinvegas said:
I don't have anyone.
The colors of Lupus group is virtually non-existent here. My family all live out of state. And as proud of I am of him (incredibly) my son just told me today that his company is going to make his job out of town permanent. I truly have not a single friend.
Owell. It is what it is.
I am so sorry that you have no one. I believe in the power of positive thinking so I am going to concentrate on you finding friends. Everyone needs friends in their life. I am always amazed how friendships can sprout up but it is much harder when we are so limited to being in a normal routine. Gentle Hugs.