How do you make people understand what you are going through and how afraid you are without sounding like a big ol' crybaby? Whenever family members and friends want to know "Why don't you come (fill in the blank) with us?" and I tell them I am too tired or I am hurting too bad or I don't have the energy I always get "Oh, come on, it'll make you feel good to get out and about!" NO IT WON'T!
Just because you don't have a visible wound or a cast or a bandage, people can't seem to wrap their minds around the fact that you are sick or hurting or exhausted. Especially if in the past you have been a "roadrunner". I used to be a spontaneous, spur of the moment kinda gal. Now I don't feel like driving the 45 minutes to my daughter's house to see her and the grandkids. Or 30 minutes to see Mom or my best friend.
Sorry to whine, but this is hard enough without the people you count on for support not understanding what is going on.
I can totally understand what you are saying, that is why it is a good thing that you have some support here. I have family that think I am just lazy, or not interested in there world. If they could only live in mine for just a day or two. I know that would change them for good. The hard thing about lupus is that we don't always look sick, but our bodies are. Try to find a support group in your area. The lupus foundation is a great one to get involved with. They have several chapters thought the US. For now I will be thinking of you.
Hey! I wish you luck in this journey. I am currently waiting on test results back now to see if my positive ANA screening is lupus. All I know is I am tired as heck, no energy, hurt all the time and just do not feel good at all. So, I can related. My husband and teen son are very understanding. But I went from a go-goer to a nothinger. I went from one week running a marathon to not being able to run 2 miles for no reason. I fall asleep at 7 at night and do nothing.
My family does not get it...that is for sure. They are like, well, you may not have lupus and all is fine. Well, you know what it is not fine. I still feel like **** and I need to know why.
Plus this is just scary....it is scary that you are so stiff in the morning you do not even feel like getting up out of bed; to get through a day of work is a struggle, and to have your legs tingling so bad that it keeps you up at night. I feel like I have the flu and I do not. That is scary. Then to sit and wait on a doctor's call and hoping it is not lupus..but then hoping it is so you know what is wrong and can get some medicine that you think will get you through your day.
I think people are just not able to comprehend what is not happening to them or they just do not want you to "change". That is not fair to you!!! You deserve the respect and support and understanding that it will take to get through this journey.
Thanks for your support. I too am waiting on a "final" diagnosis. I was in the emergency room last night with spasms in my esophagus. I swallowed a piece of meat and it got stuck. I couldn't get it to go down and I couldn't get it to come back up for about 30-45 minutes. Hubby is frantic from the beginning, but I have had this happen before and I figured it would move in a minute. I got frantic soon, though. It was horrible. The good news is the ER doc confirmed that it very well could be due to Lupus and then at my follow-up with my GP this afternoon she told him the same thing. So now he's heard from 4 different docotrs that it is likely that I have Lupus and now he's startig to come around.
Wow that is awful, so sorry about last night. I too suffer from GI problems with this dumb disease. I hate it. Sometimes I feel like my legs are buried in sand. The fatigue factor is the worst. I just yesterday started to fill out paperwork for SSI, and told my employer that August 31 is my last day. I just can't work anymore. I hope you get your answers very soon, and they are what you hope for. :-)
Thanks for your support. I have never had pain like that. It was pretty awful. I know what you mean about the fatique. I hope the SSI process goes quickly for you. It is my understanding that they usually deny the first 2 times on SS Disability, but that you stand a better chance the 3rd try. Good luck to you!
WOW...what a night!!!! I am so sorry to hear that!!!! I am glad you are ok.
I am also glad that your gp appt at least told you what it could be...and probably is.
I called my NEW rheumy 2 days ago with a new symptom on the advice of my gp and he STILL has not called me back. I am calling in the morning; I know we are waiting on test results, but he could at least check on me. If this is common practice then I need to find another doctor!!!
Hi, I too am an old fat chick. LOL I wish I could tell you to just give it time and they will come around, but now I know they just can't! No one really can unless they experience it first hand. I think some people are just caregivers and do a really good job, but most aren't and don't know how. My family is wonderful. I love them all so much. They still get sick of all of it and just don't understand. My hubby is wonderful most of the time, but I know he gets so sick of the Drs. visits, etc. I have really been through h*&*l the last 3 years and he kind of went through it with me. I say kind of because I don't think he has any idea of how sick to death I am of it! How bad I truly wish I wasn't sick. How bad I wish I could just brush it off or be Strong and get on with life. I try not to say anything anymore about "it" at all. I am totally disabled now. Don't do anything! Sleep when I can and try to keep myself sane. I haven't found anyone I can truly talk to outside of these forums. People just don't really want to know what we are going through. Heck I don't either! They have their own problems. They just want us to get well again, so we can listen to their problems. Most people get well and back to their old lives after being sick or having surgery. That is what they all expect us to do. People are used to hearing how bad Cancer is, so they tend to be more compassionate to people with it. Or if you are terminal. I hear all the time, "Oh everyone has aches and pains. You just have to push yourself to keep going!" They have no clue! I've had aches and pains also and kept going....before. This is not the same. I guess this is where we have to try to be the understanding one and understand, THEY JUST CAN"T UNDERSTAND AND HOPEFULLY NEVER WILL!
I know what you mean. Hubby is doing better now that he went thru the e-room and follow-up visits with me. He has finally heard a doctor tell him what I've been telling him. I have been hurting pretty bad for the past couple of weeks, mostly neck, shoulders and back, but I have been having really bad heel pain. Anybody else dealing with this? I can't get in to see the new rheumatologist for another 2 weeks, and I was curious if this is a common symptom or is this something unrelated?
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