02-28-2009, 09:10 PM
Well my mother in law came over tonight to watch a movie rental with me...she is trying her best o keep my company while my husband is away all week and I have two young children.
I would have preferred help bathing them or making dinner or scrubbing floors today instead. But, it was a good movie and it's nice to watch a recent flick when she wants to keep me company. I enjoyed the movie.
But, of course, she had lunch today with her best friends daughter in law who also has lupus. So she is now an expert. Of course me having lupus for 4 years should have made her an expert - but she chooses not to pay attention to my symptoms or my lack of energy or my persistent pain. She sees this girl younger than me, with no children whose only advice was for me to really ramp up my exercise and get at least 9 hours of sleep every night.
I asked whether this person had children - of course the answer was no. I asked for more than one reason, but it is easier for someone with no kids to sleep as much as they want and get to the gym and exercise.
Oh, and speaking of exercise, I recently went to physical therapy to try to improve my joint pain and muscle strength. My therapist said that I cannot exercise on land because my muscles are that weak. I was placed into the warm pool and it helped a lot, but everytime I was there for a few sessions, I got very very sick and ended up out and on antibiotics. The room is too humid for me and with the immune system issues, I get infections from being there!
Had my mother in law ever even asked me anything - she would have known all of this!
Sorry for venting! I am so angry though. Why do the people close to us not see things? I think she has been pretending that I don't have lupus all these years. Anyway - off to bed. Tomorrow will be rough after not getting my 9 or more hours of mother in law recommended sleep!
sick n tired
02-28-2009, 10:10 PM
I am sorry that you had a hard time. I get that type of thing all the time. A few years ago I got a myspace...just to be able to share with my kids on a new level. I am going to share what my blog says...interestingly enough, I have had family members who said they never understood. I suggest you take this letter and tweak it to make it yours which is what I did and then give it to your mother in law and any one else. If you think it would be too harsh, then take it and tweak it and give it to her saying...gosh I can't believe how like me this friend it...look mom read what she wrote...etc...
Letter to Normals(about lupus)
Having LUPUS means many things change and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about LUPUS and its effects, and of those that think they know what it is, many are actually misinformed. In the spirit of informing those who wish to understand...... These are the things that I would like you to understand about me before you judge me....
- Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don't seem like too much fun to be with, but I'm still me stuck inside this body. I still worry my family and friends.
-Please understand the difference between "happy" and "healthy" .When you've got the flu you probably feel miserable with it, but I've been sick for a few years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please, don't say, "Oh, you're sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.
-Similarly, please understand that many of my symptoms aren't always visible to people who don't know me well. So if you see me and I look well, this doesn't mean I'm not in pain, or exhausted or too shaky to write or sometimes even move, or haven't lost sensation, or am not having heart problems etc. Please don't say well you look alright! Especially if I've just told you I feel ill/have been very ill. I can look ok and be very ill. Telling me I look ok not only wont help me feel better but will make me feel you are casting doubt on the fact I feel so bad. Feeling sick is hard enough without having to continually battle to make people believe you are.
-Please understand that being able to stand for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I manage to stand up for ten minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one it gets more confusing. (Especially because I also have Fibromyalgia which is arthritis of the muscles. It is painful.)
-Please repeat the above paragraph substituting "sitting", "walking", "thinking", "being sociable" and so on.... it applies to everything. That's what LUPUS does to you.
-Please understand that LUPUS is variable. It's quite possible (for me, its common) that one day I am able to go grocery shopping and even able to make dinner, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying "But you did it before!"or yesterday you seemed better. if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, it this happens please do not take it personally.
-Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. Telling me I need a treadmill , or that I just need to lose weight, get this exercise machine, join this gym, try these classes... may frustrate me to tears, and is not correct....if I was capable of doing these things , don't you know that I would?
Another statement that can hurt is, "You just need to push yourself more, exercise harder..." Obviously LUPUS deals directly with the immune system, and because our immune systems don't work the way yours do this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, LUPUS may cause secondary depression (wouldn't you get depressed if you were hurting and exhausted for days and sometimes months on end!?) but it is not created by depression.
-Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now...it can't be put off or forgotten just because I'm out for the day (or whatever). LUPUS does not forgive.
-If you want to suggest a cure to me, don't get upset when I don't do it. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends and my brother suggest one at one point or another. (Some keep suggesting and even getting upset when it is not done.) I have tried many of the miracle cures but my system is different and many made me worse. I also have a condition called Barretts Esophogus and taking anything that causes pain in my esophagus can lead to cancer.
So Understand: If there was something that cured, or even helped, all people with LUPUS then we'd know about it. This is not a drug company conspiracy, there is worldwide networking (both on and off the Internet) between people with LUPUS, and if something worked we would know.
-If after reading that, you still want to suggest a cure, then do it, but don't expect me to rush out and try it. I'll take what you said and discuss it with my doctor. In many ways I depend on you....people who are not sick....I need you to visit me when I am too sick to go out....Sometimes I need you to help me with the shopping, cooking or cleaning. I may need you to take me to the doctor. I need you on different levels...you're my link to the outside world...if you don't come to visit me then I might not get to you . ...and, as much as it's possible, I need you to understand me.
03-01-2009, 06:15 AM
Good morning. Great letter, great advice. I will take some time today or tomorrow and write this letter over to my needs and give it to her, and my own mother too. You were able to communicate a lot of what I need to say in your letter. Thank you so much for caring to share that with me!
03-01-2009, 08:11 AM
Just wanted to say to you both.....wow and thanks for sharing. I so understand what you both wrote there....even though this month i have M.E....lol i should believe the Doctors i know.....but guess what .....i dont think i do. I am sending you both warm gentle hugs.I will post a proper message soon when i feel a bit better :)
Lots of love n hugs
03-01-2009, 08:37 AM
Thanks Angel. Your gentle hug is nice!
03-01-2009, 08:59 AM
Oh i am so glad. Ive realised i try not to try and understand what goes on in some peoples minds....its too tiring :) You just know we understand. It takes me up to 8 hours just to get to sleep lately and that does'nt always work. Oh if it was as easy as your relative says hey. You keep strong and try not to take her ignorance to heart. She really may think she is helping.My Mam sometimes tells me i need to get back to work........so hurtful....yet she thinks in her mind she is helping me.......so funny :)
03-01-2009, 10:32 AM
I could've written that letter, Sick n Tired, as it voices all of my feelings and frustration. Thank you for putting in to words what I couldn't.