I don't know what the heck to make of this. I read on a nother message board that the prognosis for people with organ involvement is not as good as for people without it. I was fine one second the next, im having a sobbing spell, feeling really melancholic. Getting the stupid feeling that I'm going to dye from this horrible decease. I mean I'm smart enough to know that no one can predict your time of time. I just couldn't control my emotions. I mean I also got really angry at my husband and family because I know they mean well but they tend to 'baby' me a lot, I feel they treat me like I'm a porcelain doll and limit what I can and can't do. I know i've posted this before. I've told them about it before, but they just dont get it, I dont think they trust my judgement, granted sometimes I do overdue it, but thats my decision to make...AYE im just frustrated. Im not as sick as I use to be, Thank God, and Im not as sick as some of you here, although Im not in remission Im aiming for it and hopefully will reach it. I don't want to become depressed over things I have no control over, I want to enjoy life like its my last day without it actually being my last day. Whew, feels good to put this down, as I don't want to tell my husband of my thoughts today. Not that we don't talk, I just don't want to give him something else to worry about. Thanks for listening.
I'm sorry that happened - it's weird, sometimes, what gets to us, isn't it? And who knows why...it's hard to predict.
I usually do okay with things, emotionally, but last night my heart was racing and I felt on the edge of panic because for some reason all of a sudden it seemed very real to me that I could lose hearing in my "good" ear (I lost about 90% in the other one this last April due to Autoimmune Inner Ear Disease). Now the chances of that happening are pretty slim, but not impossible. I am on medication, I have a good doctor, etc. I do what I can. But the fact remains that my own body is trying to kill off my insides, there's no denying it....
It really freaked me out for a while, there. My sweet, sweet husband hugged me and reassured me, and pretty soon I was watching TV and forgot about it....mostly.
I do try to keep in mind that yes, I have some diseases that suck, and can be dangerous. But I have good medical care, and I am taking care of myself. I eat well, I do what my doctor says, I keep abreast of new research and therapies, I explore my options and discuss them with my doctor. Honestly, that puts me in a lot better lifespan demographic than a "healthy" person who stresses out about work obsessively, or eats nothing but fast food, smokes, drinks heavily, does drugs, drives without a seat-belt, or rides motorcycles. Lots of people do all kinds of things every single day that put them at WAY more risk than I am at from these diseases, statistically. Should I envy their "health", or feel more in danger than they do? Probably not. We all have risks...when I really analyze it, mine are probably lower than a whole lot of "healthy" people.
So that is how I kind of talk myself down from that particular cliff. I hope that helps you some.
There's how we learn to live with this stuff medically/physically, and then there's how we learn to live with it emotionally. It's a never-ending journey.
If you really have trouble with it, consult a Chronic Disease Counselor - they can be quite useful in dealing with the anxiety and/or depression that naturally comes with the diagnosis of something that is (presently) incurable (thought thankfully treatable).
First of all, I am sorry, that you are having a down day. I think we all get those and a good cry helps sometime.
Originally Posted by chikititalinda
Please don't resent your husband for babying you, some of our WHL family are not that lucky and have an uncaring spouse. Be happy that yours cares deeply for you. My husband does the same thing, he baby's me and always tells me, not to over do it. But I rather have it this way, than the other.
You have to read the success stories, where people have been living with Lupus for 20- 30 or more years.
Hope you are feeling better by now.
We all have days that are hard on us. It's ok to have a day or so where you just get too emotional. The trick is not to allow yourself to live in that state. While it is true that people with organ involvement have a more severe case of Lupus ( it just makes sense) more and more of the issues can be controlled by medicine now. Many of us never get into a full remission but we can go from the severe form to a "mild lupus" that can be controlled by plaquenil and/or low dose steroids so we live a basically normal life for decades.
Get the crying out ( better out than in) then pick yourself up and start the fight again
our emotions can be influenced by our lupus.
i added a comment to another post.... i want to repeat it here.
i like many here, am not a doctor.
i like many here, read closely to peoples posts.
i like many here, watch my own medical condition closely.
i have come to the conclusion that lupus has removed my ability to properly contol emotions.
either good or bad.
i go from no emotion at all - to - full throttle emotions.
i can stay on no emotion for a long time.
i am really cold to emotion, no response.....
then all of a sudden, without warning...
full emotion. no holding back.
when it is a good emotion it seems acceptable.
but others find it hard when it is a bad emotion.
i find it awkward at both extreemes.
btw. i am on anti depressants.
i believe it is not because i am depressed...
but because part of my brain needs this type of medication.
Hi sleepy, What a great way to look at things! Never thought of it that way and you are right, some people are more at danger just based on the way they choose to live their lives daily. I'll think about that more often than not, thanks!
Hey Mari, you best believe I'm a fighter, I just trip over my own two feet every once in a while but as quickly as I fall, I get back up and keep and try to fight some more.
And yes Debbie, I am so blessed to have such a gentle caring loving husband, I can't say enough good things about him, thats why I posted that here, because I really don't want to hurt his feelings I know he means well. And yes I much have it this way and not the other way around. Well said Steve, couldn't agree with you more, I can go from 0-100 in a micro-second!
I LOVE YOU GUYS!
Hang in there girl, my husband does the exact samething. But you know I have learned to let him. It sucks to see someone hurting and sick all the time and there be nothing that they can do about it. Limiting what we do and everything is just there way of taking care of us and trying to make us as better as they can since there really is nothing else they can do. I get the emotional thing sometimes too and think I am going crazy but have gotten some really good advice on here. So now when I feel like I am going to loose it or feeling down that day, I try to remember that its just the stupid lupus messing with my brain, I tell my husband how I am feeling and I let him limit what I can do, well most of the time anyway sometimes i do have a tendency to just say screw it I am doing this but most of the time when I do that I end up hurting a lot worse than I normally would. Anytime you need someone to talk to or just to vent too please feel free to hit me up. I understand the emotional stuff and the getting treated like I am going to break at any moment. Actually the other day I woke up from a nap with my husband checking to see if I was still breathing. Freak out moment! But I was really sick that day.
Hang in there
I understand how you feel Chikititalinda,
I sometimes wonder what my long term outlook will be. Assuming that it will be long term. Will Lupus get my kidneys, or will the MS put me in a wheelchair...
I used to be really good at blowing off the fear, I just put it out of my mind, "don't worry about it", I would tell myself. Won't happen to me.
The events of earlier this year have destroyed all that confidence, and I find myself having emotional meltdowns on a regular basis.
It's not like me, and I hate being this way.
Rob, I'm sorry, but what happened earlier this year? The uncertainty sucks big time!
I'm sorry, I guess I should have elaborated more than I did.
Originally Posted by chikititalinda
On March the 30th of this year, I witnessed the death of my father.
I wrote about it in this thread-
The whole event has had a profound effect on how I view my own mortality. I have a terrible fear of the future now, and I often feel there is no hope. This is not like me. Life is such a delicate thing. I never really understood just how delicate until I saw just how quickly and unexpectedly life can end.