Does anyone have family members who are not supportive? My mom is really into alternative medicine and she thinks that I can cure my Lupus by eating vegan like she does and through exercise. She also thinks I'm a drug addict just because pain management is part of my treatment. She is the only one in my life that thinks that way. We used to have a very close relationship and now I am not sure I can have her in my life because the stress from our fights sends me into terrible flares. I am lucky that my dad is amazingly supportive (my parents are divorced) and he can't get my mom to listen to him either so he doesn't talk to her anymore. She has written me long letters blaming me for ruining holidays just because I got sick. One Thanksgiving I was so sick I ended up in the ER. I didn't ask anyone to stay with me when I couldn't go out because I felt to bad. I couldn't even eat Thanksgiving dinner. I was the only one who had a ruined holiday yet within a week of getting back home I get a three page letter in the mail from my mom saying how I ruined Thanksgiving for everyone. I just don't know what to do about it anymore.
You may want to contact a therapist yo assist with these problems and also learn new pain management strategies. I refuse to take any pain medicine more than Tylenol 800 mg even offered by doc because I want to manage my health with a clear mind. Sometimes we need to step away from struggle to see a better way, hopefully this helped.
I appreciate your response and your input. I have been seeing a therapist for over a year to deal with this and she is as frustrated by my mom as I am. With all due respect my pain management works very well and I have a clear mind.
It's horrible when this happens in families, it happened to me, I was my parents caregiver the last part of their lives for this reason I just took it, but it hurt just the same. You can't let what other people think affect you, it's their own ignorance that causes them to act the way they do. I used to tell my siblings when you live in my world for a day you can tell me how I feel, until then you've no idea what I go through. I'm sad to say I have no contact with them anymore, sometimes its best to get off the tracks just to avoid getting hit by the train. If nothing else I did it for my own health and peace, when you have Lupus you have to chose your battles wisely, and only chose the ones you can win. I hope this helps you in some way.
Re.pain management…we are all different and so is our reaction to pain management. I resent individuals who feel superior because they are able to get through the struggle without meds. Please don’t let anyone make you feel guilty for the way you manage your health. Re your mom…you have to put yourself first in this instance. If she can’t support you, then she needs to keep her opinions to herself. I am glad you have your dad to give youhelp and support. Don’t let anyone make you feel guilty about your illness.
Thank you so much for your response it helps a lot! I have felt so alone dealing with this. I spent a month in the hospital two years ago and my mom didn't even come see me and then had the audacity in a recent fight we had to claim I was never in the hospital that long cause she wouldn't have left me alone. I couldn't even respond back to her. I'm trying to focus on the positives in my life like my dad who has similar health problems as me so he understands me. I completely agree with you that choosing battles wisely is important for our health and I am done beating my head against the wall with my mom. Thank you again for sharing with me.
hopeful said:
It's horrible when this happens in families, it happened to me, I was my parents caregiver the last part of their lives for this reason I just took it, but it hurt just the same. You can't let what other people think affect you, it's their own ignorance that causes them to act the way they do. I used to tell my siblings when you live in my world for a day you can tell me how I feel, until then you've no idea what I go through. I'm sad to say I have no contact with them anymore, sometimes its best to get off the tracks just to avoid getting hit by the train. If nothing else I did it for my own health and peace, when you have Lupus you have to chose your battles wisely, and only chose the ones you can win. I hope this helps you in some way.
I would write her a letter explaining how she is making you feel. Give her books to read on the subject. Let her know that if she continues to try to make you feel worse than you already do that you will limit contact between the two of you. You have to do what is best for you and your health. Hopefully she will back off. She might feel as though she’s just being helpful by suggesting exercise and a vegan lifestyle. Exercise is vital when trying to manage this condition and everyone can benefit from eating more veggies. My mom did this with me until she developed RA and realized that I really did feel that awful. She apologized profusely for her mistake. I hope your mom will come to her senses before you have to cut off most contact. Good luck!
Right on Linda!! I completely agree with your comment about pain management. My lupus has attacked my liver so I can't even take tylenol. Thank you for your support!
Linda Bull said:
Re.pain management...we are all different and so is our reaction to pain management. I resent individuals who feel superior because they are able to get through the struggle without meds. Please don't let anyone make you feel guilty for the way you manage your health. Re your mom...you have to put yourself first in this instance. If she can't support you, then she needs to keep her opinions to herself. I am glad you have your dad to give youhelp and support. Don't let anyone make you feel guilty about your illness.
My mother is in total denial she refuse to think that I am sick. If I bring it up she changes the subject. I have a pool which I only swim in the morning and afternoon, when the pool is shaded. My mother will call me at noon and say, your not in the pool. Ugh...... I feel your pain.
Linda, I agree with you, I resent them too. I quit mine over a year ago, but lately the pain is getting to be more than I can cope with, thinking it might be time to revisit the pain management doctor.
Linda Bull said:
Re.pain management...we are all different and so is our reaction to pain management. I resent individuals who feel superior because they are able to get through the struggle without meds. Please don't let anyone make you feel guilty for the way you manage your health. Re your mom...you have to put yourself first in this instance. If she can't support you, then she needs to keep her opinions to herself. I am glad you have your dad to give youhelp and support. Don't let anyone make you feel guilty about your illness.
If you have a lot of pain, that can be worse for you than taking a pain pill. It doesn't make you weak, it makes you smart. When I have a lot of pain my blood pressure goes through the roof...
I am in the same shoes. I have no family support so I am on my own. I always have been on my own since I can remember. I cannot have conversation with my Adult children because of negative feedback they give and stress. Life goes on and need to take the good with the bad. I don't take pain medication but do take vitamins. Vitamin C seems to help me a lot.
How true this is. My BP is already too high, I understand now if I don't treat it my kidney issues are only to get worse, so maybe pain management can solve both problems lower my BP and take the edge off the pain.
I hate that she is making you so stressed that you get sick from it. I think until she learns to except your illness you need to not include her in it. If she want's to talk about it change the subject or tell her you got to go. I know its tuff, every girl needs there mom when there sick. I am getting along with my mother so much better since I started not including her in my illness. She just can't except that I am sick.
I keep my distance from my mother. I had to accept her interest only in herself and her (imagined) illnesses years ago so i had no reason to think she would be any different now. Fortunately I have friends who listen and actually care.
I’m so sorry hat your mom is like this. My mom totally does the same thing. We used to be close, but now she says she will do things with me and then flake out or if she said she will help with my kids she will make up an excuse why she can’t. I had to go through counseling because I was letting her hurt me so badly. The counselor told me that I had to set boundaries with my mom but it still hurts. She doesn’t even seem like the person that raised me. Maybe she has to much guilt when she sees me sick, I don’t know what her problem is but I do know that I have to think of myself for my healths sake. I hope things work out for you two but some people just really don’t get lupus. For people like that I wish that they could walk in outr shoes for just a couple of days. I think they’d change their tune a little.
Sorry about your mom i went through the same but in reverse my dad always thinks i am making my pains up. Honestly i just don’t talk abput my lupus with my dad , if he asks I am very brief. It’s a personal choice your mom made to live in denial of your sickness . Regarding the letters i would save them in a later time show them to her so she sees how hurtful her words are.
Thank you for sharing with me. I'm sorry that your mom does the same things to you that mine does. I agree if they could walk in our shoes for a day I think things would be different. My mom has never been seriously ill so I don't think she knows how to relate plus she knows two people who are in remission with their Lupus so she thinks that because I haven't had a remission that I am doing something wrong. My mom doesn't seem like the person who raised me either. When this started when I was 18 she was so supportive but 8 years ago something changed.
shan said:
I'm so sorry hat your mom is like this. My mom totally does the same thing. We used to be close, but now she says she will do things with me and then flake out or if she said she will help with my kids she will make up an excuse why she can't. I had to go through counseling because I was letting her hurt me so badly. The counselor told me that I had to set boundaries with my mom but it still hurts. She doesn't even seem like the person that raised me. Maybe she has to much guilt when she sees me sick, I don't know what her problem is but I do know that I have to think of myself for my healths sake. I hope things work out for you two but some people just really don't get lupus. For people like that I wish that they could walk in outr shoes for just a couple of days. I think they'd change their tune a little.
I'm sorry your mother is not supportive in the way you would like her to be. It's hard when the loved ones close to us can't even come close to sympathizing with the problems we face on a daily basis. It's hard to believe something if you cant see it and you look normal. Sometimes it would just be really convenient if they could experience the pain and the ups and downs we go through. I've seen programs where pregnancy contractions are simulated for men so that they can experience what birth feels like for a woman and how painful it is. I wish they had a simulator for lupus so people could understand us too. Anyways I don't think it's fair that your mom is blaming you for everything, all she's doing is adding to your stress. But You might want to consider alternative therapies. My mom is really into looking for healthy alternative ways for me to get better. I currently do acupuncture, I've been to a food nutritionist to change my diet. I havnet really had "curing" results with these alternatives, but I do find they help and everyone's body is different so you might find it helps much more on you. Who knows, taking your moms suggestions might bring you two closer. Best of luck!
CourtneyM. I'm so sorry that your mother doesn't understand about your Lupus. If she lives near you, maybe she can go to the doctors with you and see for herself what you are going through. Give her info re; Lupus, have her go online to study about it. If she chooses not too.....you need to decide how much or little she will be part of your life. IF she is negative, tell her you will only talk about positive things. YOU make the moves of being with her or talking to her on only your terms. If she doesn't like it....then you need to make the tough call on how to handle the situation. Hopefully it won't come to not having a relationship with her. Many of us have problems with dealing with close family members either being in denile of our illness or they just don't know what to do, and shut us out. I spent yesterday in the ER, so I couldn't bring dinner to my 95 year old Dad....his response was....get better doctors. I keep telling him that there are certain things that just have to take it's course, and there is only so much the doctors can 'fix'....he just doesn't get it. No matter how much I try to explain it to him. But at least he understands that I'm sick. Courtney good luck, my prayers are with you. Feel better