View Full Version : Losing my family because of Lupus
06-17-2008, 08:25 PM
Not my wife and kids, they are fine. Strangely enough, my wife's dad died of Lupus when she was young. Her family understands the issues. Mine doesn't.
My mother is a terrible person. After today, I don't even want her back in my life.
The way I see it, there are 2 subjects that lowr the compassion shown to me by others.
1. pain killers(oxy, dilaudid)
2. "too much" rest.
On a visceral level, some people just think you are faking symptoms in order to be a lazy drug addict.
People need to realize that pain kilers have no moral component unless being abused. I regret being honest with her about them. My flares feel like a bad charly horse in every muscle that never stops. On the pain scale, I get a true 10+. Its this kind of pain that resulted in assisted suicide laws.
Then theres the "rest" How many of you get told to "listen to your body" then a month later get treated like a lazy couch potato.
My mother and both sisters have done this to me after I "let them in". Today she called me "nasty and useless". Probably won't speak for a few years, and if she bags on me to my kids Im pulling her grandchildren.
Sorry to sound like such a jerk, but this was so uncalled for. She hasnt gotten a physical in 22 years due to her denial and fear of doctors.
Do any of you get ths kid of treatment?
You sound like me. I've been honest to people in my life about having SLE, only to have them turn around and use that information against me. People who I trusted. People can say some terrible things, and they don't know or care about how much it hurts. One of the worst things I've ever heard, was my soon to be wife tell me she was leaving because "I need someone with a future, not some guy who'll be dead in a couple of years". I lost most of my friends. Now, I do my best to surround myself with people I know will understand that rest does not equal laziness. People who know that lupus isn't just "A woman's disease". I've heard it all. Been told I'm a malingerer who's living for free off of non-lazy Americans tax dollars. Apparently people think SSN disability affords a life of luxury on sunny beaches, and vacations in Europe. Even had my ex's father claim that lupus wasn't even a real disease. How some people can wallow in such ignorance is beyond me. Anyway, there's no need to apologize, as I don't think you are being a jerk. Being marginalized and abandoned in one's hour of greatest need makes a person lash out in self defense. Anyway, to answer your question, many of us here have gotten some pretty bad treatment. This place, is a great place to vent. Nobody will judge you. There are some really good people here who understand.
06-18-2008, 05:46 AM
I am sorry your trust in others has been turned inside out. I know the feeling of betrayal but under different circumstances.
I only get. "wow, what happened to you?...It, Lupus (IT as I call it) happened. I don't get defensive about it anymore. I blame IT, on IT...to me it has it's own entity that is separate of me. IT wasn't my choice of diseases.
For me, it helps me that I understand that people do not get it, instead of trying through metaphors, example by relations similarity in other pains to help them understand. How could they, exhaustion..muscle pain is different from participating in a triathlon. After a triathlon you recover completely..usually.
I don't know your relationship with your Mum, sisters...but I wouldn't say a great one to start with if they found it in their vocabulary to say the words, nasty and useless. I was going to suggest telling her that you did not like her words and would appreciate if she kept comments like that to herself. It maybe worth it, it may not...you know your relationship.
Jerk?...only you think that, we don't. We all know anger whether it is disease related, family, work...doctors. We understand..we don't judge, we have been judged and no one likes it.
Don't waste your time comparing what she has or hasn't done regarding her health...it will just upset you more, aggravate the mistrust more. Aggravate you symptoms more, IT loves stress and mental friction. Definitely time not spent well, time that could be mending what is gong on within you.
I can't imagine someone wanting to be an addict, or someone wanting to be in pain so they can be "lazy" but sometimes the addiction can inadvertently happen.
Do you also have Fibromyalgia? Check to see if that maybe a possibility? You may have another overlapping disease, syndrome which is common with SLE that maybe intensifying the muscle issues.
Lets talk about the type of pain, what is going on with you physically....Maybe you need to seek a second opinion to evaluate your symptoms...your current drugs, trying different combinations. Medicine, pain management techniques are always evolving...through injections, through direct contact...cognitive changes...surgery...
To find ways to manage our symptoms we go through changing our eats, personal care, try very light daily exercise, finding a routine of some sort, be it small or medium. Me, I take life in small increments. I tried the take it by day thing..doesn't work for me..I live in the moment. Find living life on a small scale.
When I can do something, I can...resting too much, relying on drugs makes me sedentary when I could be just taking a stride to the mailbox..no big feat, but small, living small..maybe small will evolve into medium. Not moving makes the muscles hurt more...they need to be oxygenated with stretching, with moving....like the mind when we yawn, when we read or do mental things to exercise the gray matter.
Myself, I am into swimming these days...nearby pool for you? It envelopes and holds the muscles till they strengthen...
I am into spirituality, not just through religion but also in all things that are living, moving... world of everything, to anything...it brings me a great sense of calm...
Finding a calm can bring the disease to being more manageable. Alleviating stress that the disease thrives on...
You may have to find a way to bring your flare under a bit more control through other things than medicine if you are not already doing so..we can talk about them here, or you could talk about them with your doctors...
I am sorry you couldn't find your openness, your honesty left in trusting hands. It hurts..I wish I could say they would change, but it is us that has to change our thoughts about them in order to cope. Yes, they were rude, mistrusting, betraying...and from your own family I understand the hurt.
You deserve better, keep your family small for awhile...your wife and your children...
And if your children do go to Grandmum's teach them how to tell Grandmum not to say negative things about you if, your Mum won't listen to you. Maybe they could say I love my Daddy bumps, bruise and all. I don't know if that is age appropriate, I am assuming they are young...
When my brother was here on a vacation, I said I needed to go lay down and rest before we ventured for the evening. When nightfall came, time to leave...I said gosh I am still so tired...well, didn't you just sleep, he said. I try not to feel defensive, because I try to understand why they don't get it. I could have went on about the disease, but I said yeah, I wonder why I am still tired..humm...and went about the evening. Not my jovial self, but I tried. If I ws unable to leave at all. I would have said sometime like..you guys will have to go without me...or looks like I will be doing a solo at home.
Instead of digressing away from the disease it is okay, to be okay with it..we can live with it. A feat, but not impossible.
Well, Mightyblocksman...you are in great company here...I hope you chat up often, we all learn and help one another through the diseases, through relationships, doctors appointment, family..you are safe here...
Keep looking for your wellness.
06-18-2008, 04:24 PM
Sorry to hear of the lack of support and comfort. No you do not sound like a jerk. You sound like someone who's been let down by those who you put your trust in.
I had a difficult time with my father when he was alive. Parts of me will never forgive him for the lack of support he showed my mother with her lupus.
Now I know first hand what kind of pain she was in and what her day to day life was like, I'm even further shocked by his lack of support.
To thine own self be true....well I guess for that it means take care of your own ass as best you can.
Vent any time you like. We understand :)
06-19-2008, 12:10 AM
You've been provided with alot of wisdom. I just recently went through something very similar to your situation.
Without a doubt, lupus is difficult for us to accept and understand. My doctor wrote the book "But You Don't Look Sick"....it deals strictly with the issues you brought up. I gleaned from it the nuggets of truth that I could apply in my own life; but I found one of the most important things that you can do for yourself, is understanding that you have the power to choose the environment you which to live in.......if it means that those who are critcal or are not willing to ask questions and want to become involved in supporting you; unforuntately you may have to maintain those relationships from afar. My life changed drastically when I decided to eliminate the the judgements, jokes, and just plain meanness from people. It's hard to find a true, honest and faithful friend....but I believe that God knew that in my heart that's just what I needed to restore my faith in the "greater good" of people. She is encouraging, supportive, and also "calls me out" when I'm using the pain to stay away from people.
About the pain, may I suggest that you talk to your doctor about Gabapentin.....I used to hurt so bad, I couldn't walk to bathroom. Lifting my arms would make me cry. Now that I'm stablized on this drug, I can walk without pain (90percent of the time). It certainly is worth a try.
Everything will work out, be true to you and understand that people (whether they are family or friends) can never understand what they do not know about the complexities of lupus.
Stay close to those who are willing to lift you up in prayer, lift you up with their wisdom because it's a road they've traveled on before you. Surround yourself with positive music, healing messages....and if you are a man of faith....stay connected to that community.
Stay strong, hold on and let love rise up in your sould.
06-19-2008, 03:04 AM
Hi Mr Mightyblocksman,
I am sorry to hear about what is happening with you and your family members. I think that all of us with Lupus have heard similar things through the years. You have to think of them as just being ignorant and distance yourself from them as much as possible. Do not let them stress you out, because stress is really bad for people with Lupus. It can throw you right into a nasty flare. I use to stress at first about family members making mean and ugly remarks to me, but not anymore. I just tell them right out they can have their opinions and they can keep them to themselves or they can leave. They have gotten a lot better towards me as they do not talk about Lupus and I don't share anything with them. There are people that you can talk to and others that just plain don't get it and you can not talk with them. You will find in time who your true friends are. I wish you the best and know that you can always come here and post, as nobody will treat you like that. We all get it. God Bless,
06-19-2008, 08:07 AM
Oh Mightyblocksman -
There is nothing so distressing than have people you love look at you with judgement...I have been there and back..and there and back again. I have a continual "thing" with my Mom, who lives next door (oh yeah, try to avoid her for a while! Not!) who just doesnt have that type of compassion. There are times when she is - but its not something I can depend on. Its always the "I thought you just TOOK a nap" or "How can you sleep the day away like that? Im up at 5AM!!) uughghh... Yeah, Mom, I was up at 5AM too, struggling to reach the meds from my bed so I could get up to pee.."
I have found a really good solution for me, and it pertains to something Oluwa said about changing our own attitude: I found that no matter WHAT I do or say, or plead or beg with her - she is who she is, and she will think how she thinks. When I learned to accept that fact - my whole attitude changed. When I accept her, I lower my expectations of her. When my expectations are lowered, I am not upset when she doesnt meet them, thus, Im not hurt or disappointed. THis process has changed our relationship greatly. I dont argue with her anymore, as I know it is futile - it will change nothing. I have learned also that my Mom DOES love me and DOES care that Im sick - as yours - Im sure. They just do it in THEIR way. It is hurtful, but essentially WE are in charge of how we allow people to make us feel. When I look at her really stupid comments as those coming from a person who WANTS to understand, but CANT - I am not angry. Its all about acceptance. Its not easy, but its works - and it has caused me SO MUCH less stress, and subsequently a better relationship with her. Its hard for her to fight with someone who will not fight back!!
We here on this board, know all too well the different problems you are experiencing and, we truly understand. Please use us to vent and bounce things off of.
I hope you feel better soon, and keep posting!
06-19-2008, 08:21 AM
You have received wonderful words of encouragement from our members and some excellent advice. There is not much that I can add to what has already been said. I just wanted to say that you must not beat yourself up for making the decision to no longer allow those persons, who mentally abuse you, back into your life. Sometimes, the best thing that we can do for ourselves, in order to help us manage this disease, is to eliminate those stressors that cause us harm. Unfortunately, those stressors, for many of us, happen to be family members.
As others here have commented, it is not your fault that your family "doesn't understand". I believe that, if they truly cared about how this disease affects you, they would take it upon themselves to learn about the disease, its symptoms, its medications and their side-effects, its treatments and how it completely changes your life. Since they have chosen, instead, to be judgmental and uninformed, that is not your cross to bear.
However, we are talking about your mother and your sister and, I assume, at some point and for some reason, they will again be in your life. It is at this point that YOU must determine how they will be in your life. You will lay down the ground rules about how they are allowed to speak to you, about how they must respect you, and if they are to make comments about your health, they may only do that AFTER they have become knowledgeable about your disease. Until then, if they want to have anything to do with you, it may not include them making any comments about you, your health, how your deal with your disease or how your disease affects you. If they are unable to do that, then you would prefer that they not contact you at all.
What I am suggesting is that you, and only you, are in control of your environment and those who occupy space in your environment. Therefore, it is completely acceptable to eliminate those things, in your environment, that are not conducive to your health. You owe no one an explanation or an apology for whatever eliminations you make.
Find peace in your decisions and remember, you are not alone. Everyone here understands and we all are here to help.
Peace and Blessings
06-19-2008, 03:52 PM
Mightyblocksman, how sorry I am that you have family members who just refuse to look at things they way they really are. But, I'm glad to hear that your wife, children and your wife's family 'get it.' I've been fortunate - my family has been pretty understanding. Your Mom sounds like she's pretty paranoid about health problems....just can't accept what's happening to you, so she's striking out. What a shame.
You've gotten sound advice from other members. YOU have to decide who to let into your life - allowing someone to put you through terrible stress can make you so much sicker. I hope you'll choose your own best care, Mightyblocksman. We're here for you.
06-20-2008, 08:51 AM
Thinking of you...wondering how things are, how things are going...
We are always here...
07-08-2008, 12:29 PM
I just wanted to post a reply to your E-Mail. My Dad has Lupus and he thinks that just because he was able to work with it up to retirement that mine can't be so bad. Both he and Mom are in denial about my Lupus. At one time, they were going to help me buy the supplements, immune boosters, etc. that I needed. But that quickly feel down the wayside when they had other things to buy. I am not mad about it, but wish I had more
Boyfriend thinks I should work more and have a full time summer job. He doesn't understand Lupus, etc. and it has been insinuated (not really said outright) that I am at times lazy.
I feel for you. We get caught in the Catch-22. We are damned if we do, and damned if we don't. I know what Limboland is all about, and it's not going under the Limbo bar.
07-19-2008, 11:31 PM
man I know what you all are saying. My family thinks i'm a fake, one day i can go to the club next day i dont feel like having lunch with someone. lol I have to laugh sometimes to stop from crying.
Lupus hasn't pushed my family away but they can say some rude and insensitive things. They just dont want to understand sometimes and have temporary amenisa when they want me to do something and i'm to tired to do it.
When it comes to jobs sometimes i want to work more than parttime but i worked fulltime before and i couldnt keep up then i had to quit my job beccause they didnt want parttime workers. I just deal with it and say to myself one day i'll be able to make the money i want.
07-20-2008, 08:43 AM
I understand about the pain that is caused from this disease and use meditation to help in this regard. And a combination of tylenol and advil around the clock, it seems to take the edge off the pain. But steroid drugs have help me the most with the pain and I feeel almost normal when taking them.
I know what you mean about people thinking one is lazy there are days I feel good enough to keep up with my housework and etc. And then there are days which it is all I can do to get my self cleaned up for the day. Some days I am feeling good and other days i feel as though I cant go on this way. But life is to be lived but we must also know when to take it easy and give our bodies rest.
If people do not understand then that is there own shortcomings not ours.
07-20-2008, 12:35 PM
Wow, we've all been there at some level, at some time.
May gathering together like this help all of us find the strength to stand above the fray - WE know what we can and cannot do on any given day, and WE know in our hearts that we live every day the fullest that we can.
One choice I hope you consider carefully, mightyblocksman, is those wonderful children of yours - who will be hurt if you deny them their grandparents? The grandparents or the grandchildren? If you show love and compassion, and help the kids understand what lupus is for you, and how you are living to your best every day with that condition, then maybe their love for you can help their grandparents learn. If not, the children will eventually decide whether or not they want to see them again. They will know love in your home, and want to be in that environment.
I send you and everyone who's responded to your anguish a cyber hug and all the strength my shoulders can bear. We are a circle of support together.
07-20-2008, 05:18 PM
Did you get my PM? We would all love to hear from you!! Hope you are doing well, and family issues have subsided some.
Please let us know you are OK....Come and dump all your garbage if you need to....No one has to do this alone!!!