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laurid8967
07-19-2008, 10:54 AM
Hi everyone -
You know, I just need to vent.....Though my mom has been a bit better abbout my limitations since I have been officially diagnosed, she still has the ability to make me feel like I have to constantly explain myself if I cant do something.
Today, we have a 2-year-old birthday party - OUTSIDE in 103 degree weather! Do I need to say more? My husband (at my request) called her and said "Listen, I dont think Lau should be going to this party - she'll end up in bed for a week"
She said "Well, they do have a little cabana thats air conditioned and there is some shade...." He said, "Yeah, NO - shes not going"
I called her and she tried to sell me the same goods. Why does she do this? Why doesnt she get it? Its not the heat, even, but that the sun could set all kinds of bad things off inside my body!! Im like crying right now because she is my mother, and I would thing SHE should be the FIRST one to say, "LaURI, you shouldnt go to this today - I dont want you to get sick" But, NO - i have ordered her a LUPUS BOOK (Daniel Wallace), but it hasnt arrived yet. I need to accept her indifference, but right now, its hard. Im so sick of flippin explaining myself to someone I shouldnt even have to explain ANYTHING TO!!! I can count at least FIVE people in my life who know more about my disease, and try to keep me well, more than my own mother. Actually many more. uuughhhhh!!!!
I just have to let this go - turn it over to God....Thank God I have my womans meeting today - that ALWAYS helps, you know?
Ill check in later, Im sure....Thanks for letting me blow off steam...
Love Lauri

NoodleMom
07-19-2008, 12:05 PM
I hear ya. I m sorry that she is not there for you.
(((((( lauri)))))

Kasey

Oluwa
07-19-2008, 12:31 PM
Hi Lauri..

You don't have to explain it to anyone. I always say... it causes me more stress to have them try to understand me, understand Lupus than it is for me to understand why they don't get it. I've tried the metaphors, the similar circumstances, relating to their experiences...They get it that day until the next incident, event comes along.

No, I know my limits...and leave if at that.
No...leave it at that.
I can't, not today, maybe tomorrow...and leave it at that.
I would love to but I can't..and leave it at that..
Hey I'm pooped...and leave it at that...
I want to, but my body won't cooperate..and leave it at that...

We expect more understanding from our Mum's, with an illness or not...from those who we care about and those who cared about us when we have had a cold, a broken leg, or stitches. Unfortunately, no one can see inside pain, fatigue...unless we express it in our faces, because verbal communication usually makes us feel like we are whiners, we are weak..but you know we aren't..

And times...it is hard for people to see pain despite it is written all over our faces. It is look at as, are you upset...what's up with the scowl, grimace...Me, I have pain wrinkles in my face...when I am more relax my face planes out.

I think the best thing to do is to realize, accept they don't or may not understand Lupus. When you need that extra dose of love, kindness, tenderness...just ask for a hug..I need a head hug. Hug me, please...sometimes being vulnerable is easier to understand ...the emotional pain of being ill, the need.

Mum's are people. All of our relationship with our Mum's are different. Mine has passed...but I know she would have gotten it. Times I cry for her comfort...

I hope and pray you will find the understanding you need and seek....Head hugs.
Love,
Oluwa

Saysusie
07-19-2008, 04:50 PM
Lauri;
At the risk of being the devil's advocate here, I'm going to chime in as a mother who had a daughter with Lupus. I like to think that I was very understanding of her limitations, but I know that there were times when I just wished that SHE WAS NOT SICK! And in wishing so hard for that, I made comments and statements that were similar to your mother's.....you know the "Can't you just.........?" kind of stuff. It was not so much that I didn't understand, or that I didn't care....it was that I didn't want her to be sick and I thought that if she could do these things, then she would not be sick and I just wanted her to be able to participate!
Granted, there is no logic to this kind of thinking....it is a mother's warped sense of helplessness that makes her say these stupid things..... Like the time that I wanted her to go to Disneyland and I offered to buy her a wheelchair so that she could go (that went over like a lead balloon). I told her that I was willing to do anything to make her comfortable, protected from the sun (sounds like the "cabana with air conditioning" huh?), and that we'd leave as soon as she said the word! That ended in a screaming match with her saying to me exactly what you've said about your mother. In a nutshell, asking me why I did not understand why she could not go, especially given that fact that I, myself, had Lupus! How could I be so ignorant? {I thank God that I always told my children that they could tell me anything about how they were feeling, if it was done respectfully! So, there were very few times when issues did not get worked out by talking}
I had to finally admit to her why I did and said the things that I did and said. I told her that, from that point on, if I suggested something stupid like that again, to just give me her famous "are you kidding me?" looks and I would understand!
I'm saying all of this to say to you that, it may not be that she doesn't get it or doesn't care...it may be that she cares too much. Talk to her, do it calmly and lovingly, letting her know that you know she loves you, but there are things that she has to accept and one of them is that you are sick; that is a fact that cannot be changed. You need her help in order to get better, that is a fact that cannot be changed. Then, tell her how she can help you.
I could be way off base here.....but I just wanted to give you a another point of view and possibly some insight into her behavior!
In either case, you must find a way to alleviate that particular stress and I think that you've taken a good first step by buying Daniel Wallace's book for her. Don't give up and remember....we are always here for you.

Peace and Blessings
Saysusie

Quarterhorsegal
07-19-2008, 04:55 PM
Boy o boy I wish someone had the answer to this one. My mother is the same way. When I was getting tested for lupus, she just kind of flippantly said " Oh, I am sure it is not that bad". And now that she knows I have been diagnosed with lupus, she still does not take it into consideration when planning events. 'Hey, lets all go to the beach' After her last visit when I thought she might finally be getting it because she actually asked me how I was feeling, she went home and mailed me a bunch of literature on mold. My house has no mold - it has been tested. I have decided that as a mother she just does not want to believe that I could have this disease and be this sick. And truthfully, I would not want her hanging out going 'oh you poor thing' or anything, but maybe just a small acknowledgement of belief and support (like giving me a hat). All I can say is come on and vent all you want, because while I have NO answers and really wish you did not have to experience this with your mom, I can REALLY understand your frustration. I hope the book helps her to understand...maybe I should order one for my mom.
Hugs,
Laura

KathyW1958
07-19-2008, 05:55 PM
Hi Lauri,
I am sorry that you are having problems with your mother not understanding. My mother passed away before I got diagnosed and in a way I am glad that she did not have to find out that I have Lupus too as my younger sister was diagnosed about 10 years before me and she took it very hard. I know that when I was a kid and I would constantly complain about the sun and being so sick with sore joints, muscles etc and very bad killer headaches she would just tell me that it was just growing pains or that it not that serious etc. She never knew how sick I really was and it is sad when parents don't get it. Maybe the book will help her get it. I will pray for you and that it will get better with your mother.

Hugs,
Kathy

laurid8967
07-19-2008, 06:00 PM
Thank you all for your replies -
I will say, Saysusie that you may not be that off the mark here. My Dad (who is AMAZING) always says that she does not want to BELIEVE I am sick, too. She is such a wonderful caring person but, usually, its towards others and not me. We've always had a "weird" thing, you know? My sister is always telling me to stop looking for her approval, compassion, etc, because its probably not coming. I made BIG strides with her after I became involved in my 12 step program and my renewed faith in God, and I usually DO accept her for who she is, I know that she does love me, but shows it in her way - not mine. Im usually pretty cool with that. Some days are just harder than others.
So, to really do a number on myself, I went over there (she lives next door), and we had another little argument. I kNEW that would happen, but I went over anyway!! lol...Its also THAT time of the month, of course!!
I am very grateful to have my hubby, who ALWAYS knows my limitations, and has NEVER doubted that I am truly sick. He is very protective of me, and I do get that support from him all the time.
I think I am just extra emotional and sensitive today. Im a little nervous that the prednisone doesnt seem to be working as great as it did, and that I know I am probably going on Imuran. fear of the unknown, I think. I am not often afraid of this disease, but I must admit, for the past couple of days Ive let my mind wander to those scary places...and my future with this disease.
I do have a very close relationship with God, and I have been reallly bending his ear today!! I trust He has a plan for me, and Ill know what it is when it is time to know. I need to stay in the moment, day - enjoy the little things...stay grateful - I know it could be MUCH worse.
So - to all of you - thank you. I am so incredibly fortunate to have found my way here - to all of you - and your constant support and empathy. I am truly very, very grateful.
I am off to bed EARLY!! Need some rest and rejuvination...
Love and prayers to all of you -
Be Well, Lauri

rob
07-19-2008, 06:54 PM
Lauri,

For many years, I've considered my father one of my best friends. We've gone places, had adventures, done so many "guy things" together. I thought he would understand when I got the diagnosis of SLE, that things would change. We came to blows, and almost got into a fight over my condition, and his inability to comprehend the ramifications of my diagnosis. I came close to telling him that he would no longer be a part of my life, if he kept saying that Lupus was a BS disease, and that I was full of it. Well, I knew that he really didn't believe that. Those were the words of a father who didn't know how to accept the fact that his son had the same disease his wife had dealt with for more than 10 years. He wanted no part of it. It took time, but he calmed down, started reading, and eventually understood to the best of abilities that this is how it is. The diplomat in him surfaced, and he was the one who suggested that my family have 4th of July at my house. It was not easy, and it took time, but it did happen. Your situation with your mother reminds me of what happened to me. Sometimes, parents think that they somehow failed their job if one of their children becomes sick with a disease, be it Lupus, or something else. Be firm, and realistic with them. Chances are, there will be understanding, though it may be hard at first for them. I hope you have a good night. Know that family matters such as this, can turn out OK, but it may take time. Of course, you can always vent here too. It never hurts, and you know we'll listen.

Rob

laurid8967
07-21-2008, 07:46 AM
Rob,
Thanks for the reply...families are a tough gig, I like to say...I didnt realize your Mom had it too, Rob. Thats tough to see your Mom sick...
My Mom is the type that will go out and but my kids school clothes, take them to the movies, my son sleeps over EVERY Friday night, etc. She is the BEST Nana in the world. But when it comes to me, for some reason, she cant find the compassion.
But what you said is right, it is tough for them to see/think about. Most days Im OK and just let it go, and some days Im more needy, I guess, and let it get to me. I have a great Dad, too - I adore him..
Im glad your dad has come around too...How are you feeling? No trips, falls, Evil Kenivel stunts this weekend? Did you guys have those crazy thunder showers this weekend? It was pretty intense here - plus Im on the water so they seem sooo close!!
Hope you had a painfree, relaxing weekend, Rob. Talk to you soon
Lauri

Saysusie
07-21-2008, 08:07 AM
Lauri;
I'm glad that you talked to your Mom (even if it was an argument). I do hope that you were able to say all that you felt you needed to say. I agree with Rob 100% (as I said, I've been there as a parent) and yes, we feel as if we've failed somehow when our children get sick. I beat myself up for years about my Lauri having Lupus because I realized that the genetics were in my side of the family. I punished myself by saying that if I had not been her mother, she would not have developed the disease and would be alive today...so it was my fault that my sweet daughter died!!
These self punishing words coursed through my mind throughout her illness, I believed that it was all my fault. So that reinforced my desire to NOT want her to be sick and to try to get her to do things that meant that she was not sick!
Oh, the dynamics of emotions in each human being are so complex that we simply cannot put them in a box and label them.
Keep talking to her, keep educating her.....much of her denials are probably based in ignorance of the true ramifications of this disease. Just keep talking to her.

Peace and Blessings
Saysusie

laurid8967
07-21-2008, 10:13 AM
Hi there -
What an awful way to feel - as a Mom I can understand for sure...I have SO MUCH guilt just about being sick and not being available for my kids sometimes.
As far as talking to my Mom - oh yeah, we can have a drag-out screaming match and we are talking normally within a few hours...Like I said she lives next door, so its pretty hard to avoid!! And as I said earlier, she has a heart of gold - she is a very kind, giving person...her good qualities definately outweigh any bad. Im still waiting for my Lupus books (i ordered two, one for me, one for my family). I should have paid a little extra for faster delivery. Its been almsot two weeks I believe.
Anyhow, thanks for all the replies...I love that I can come here and vent to those who "get it"...I am a little out of it today. I rolled about 100 meatballs yesterday - Im having my daughters graduation party this Saturday, so Im doing things gradually. Im actually going to rest alot today to save (hopefully) energy for the end of the week
Talk to you soon,
Lauri

Saysusie
07-22-2008, 11:26 AM
Oh yes, do get some rest and take care of yourself! I hope that the graduation party is wonderful and that you are able to enjoy it also.
You might think about, while waiting for the books, printing up some of the posts on these forums and giving them to your mother to read. Especially the ones that you think might give her a better understanding of how Lupus affects us. It's just a thought!

You and your mother have a very good relationship based upon the fact that you can argue at 2:00 and be back to normal at 3:00! That means that neither of you hold grudges...that is a very good thing :D

Get some rest and I hope that the party makes you and your daughter very happy!

Peace and Blessings
Saysusie

kamillah
07-22-2008, 01:14 PM
Hi,

i enjoyed this thread so much because it gave me more insight in what is going on with my husband. I think he should understand my illness and he does but it is that he just does not want to admit that I am ill. Strange since he is an internal medicine doctor. but we are best friends and I think he is afraid he may loose his friend. Today I went to have lunch with him and I meant him at his clinic, he said to me, "you look very sick more than any of my patient's.'' I thought Gee, thanks since it took everything I had to get ready to come to go to lunch with him. But today was the first day I saw great concern in his face. Then he asked me when that appointment was again for cleveland clinic. I told him next week. I think today he has accepted that I am ill.
Many times he does not want to admit that I am ill and he treats me like I can just keep up. Which I cant. I am finally learning to say when my body is saying no you just cant. now I realize from this thread that his reaction is because he loves me so much he does not want to admit that I am ill.

Kamillah

lindsey85
08-04-2008, 05:56 PM
I totally understand where your coming from...I just had a conversation with my mother a couple of weeks ago about how she never understands how I feel and how she won't accept my illness. I am 23 yrs old now and was diagnosed at 17. My Lupus became active at age 19. Not once has she ever even tried to comprehend what I go through. On the other hand, I have a very supportive father and husband. My father makes sure all of my medical bills are taken care of and pays for my meds. Being as young as I was then and even now..sometimes there are no means for me to be able to afford either. But in 6 Years..not once has my mother ever offered any kind of support to me...and just like yours..always asks me to do things that are completely beyond my capabilities. For instance...when she moved she expected me to pack every thing she owned and pushed me to do it...and even after telling her how horrible I was gonna feel for days to come...she guilted me into moving heavy boxes and furniture..she is too selfish to believe that her daughter is not perfect or normal or healthy...you have to ask yourself, what mother doesn't want better for there daughter? And I have..and I struggle with the pain of knowing how she is every day...and I have distanced myself from her, knowing that I just can't take any more pain...I have enough to deal with that I cannot control..I don't need anyone to add on more...
:n00b:

Lindsey :( :(

Saysusie
08-04-2008, 10:49 PM
Kamillah;
I do believe that our loved-ones love us so much that it causes us some grief due to their reactions. Especially men, they have an innate need to fix or correct things, and when they can't, they feel inadequate and this makes them just a bit angry. As I said, the dynamics of human emotions are so complex!
I think that it is great that you recognize the underlying "love" in his reactions. That will probably go a long way in your being able to educate him about Lupus and how if affects you! I wish you the very best :lol:

Lindsey:
I am so sorry to hear that your mother just will not accept your illness. When I spoke about wanting my daughter to do things, I meant enjoyable activities (like Disneyland, Shopping, Movies, etc.), not working or lifting heavy boxes. I have to agree that those expectations do sound a bit selfish.
I hope that you are able to make it clear to your mother that you cannot do for her anything that would jeopardize your health. Perhaps if you keep your distance for a long enough time, she will realize that you are serious about protecting your health. However you and your mother resolve your issues, I hope that it is to your benefit.

Peace and Blessings
Saysusie

DrinkofWtr
08-07-2008, 04:00 PM
My mom isn't understanding of my Lupus either. I think she sees me as well, not sick.