Daughter in denial
My 23yr old and I were looking at canes the other day, in preparation because I am finding it difficult to walk more times than not lately. I am not ready for a cane yet, but if and when my rheumy and physio tell me that perhaps I should consider using a cane, I want to be emotionally prepared for that devistating change in my life.
My 23yr old, and 21yr old married daughter and her husband know how difficult life is for me. Even though my 18 yr old also knows how sick I am, knows the difficulties I am having, she is really struggling with the fact that I will not be like I used to be Pre-Lupus.
It is hard enough coping with the progress of this disease in less than a year, along with suffering so much with complications from an operation. It is also hard to feel the loss of function in my body when I do so much to make sure I am healthy. I do just over 2 hours of physio/exercise a day to build up my muscle wastage and give me strength and energy, eat extremely healthy, work hard to reduce my stress, made massive adjustments in my life and as a teacher to make my life easier to live. I also have a very positive attitude, especially since my operation in January. Lupus is not going to rule my life, I am learning to live with Lupus.
I am fighting to keep myself independent and have a good quality of life. I do all I can to be fit and healthy and to have healthy relationships. I go to church, the prayer group at church pray for me all the time, I go to the pastors and ask for prayer regularly, during staff devotions before school starts the teachers frequently prayer for me, sometimes daily when they know how bad things are, my family pray for me, I pray for myself.
Here is my problem. My 23 yr old and I were discussing with my 18 yr old that we found some really good canes (reasonably expensive but fantastic). My 18 yr old was so angry with me and aksed me why am I just accepting that I will only get worse and that I will not improve. My 23yr old told her that I am in so much pain and have such a hard time just to walk all the time. There was a big argument between my 23 and 18 yr olds.
Yeah, I have faith that God can heal me, but then on the other hand, I refuse to do nothing and just expect God to heal me. I know God wants us to look after ourselves, and not be lazy. I believe God wants us to be wise and do the best we can. It is like, I am asthmatic, and expect God to heal me, but continually smoke, work in an environment with high levels of chemicals, spend hours in the cold etc... all triggers of my asthma (I don't smoke by the way). I know if I was God I wouldn't heal those people who are damaging their bodies.
My 23yr old spends a lot of time with me. She is autistic and needs to be supervised a lot of the time, she comes with me to school to help me out, she relies on me to help her organise her life, she cannot drive so I drive her every where, I go with her to see her psychiatrist and psychologist, as well as her doctors and they always talk to her about the seriousness of my illness and how important it is for her to become more independent and help me out a lot more.
My 21 married daughter and her husband visits us regularly, checking up on how I am feeling and with the latest news of my illness. She laughs at me when I tell her she can come over on her day off and do my house work. She reminds me that she has left home now and she has her own house to clean (cheeky little girl!). But they are very supportive and help out whenever I ask anyway.
My 18 yr old, is well loved by so many people. Has prayed so hard for me to be healed. I am sure that I would be worse off if I didn't have so many people praying for me. She is just so devistated when she sees how hard I struggle everyday. But she really cannot come to terms with how sick her mother is getting. She tells me that I have just given up.
This is the daughter who has made up a calendar for me to look at that tells me what she is doing everyday because I keep asking the same STUPID questions many times a day. "What are you doing today" or phoning her telling her it is polite to let me know if she isn't coming home for tea. Her reply is "I already told you so many times that I will not be home for tea because ...." My reply is ALWAYS "oh yes I remember you telling me, sorry I forgot". She doesn't tell me off as bad anymore, she just gives me 'THE LOOK'.
You all know how stupid this disease is, how depressing you get at times, how it messes with your mind and emotions. How when you put a special effort into wearing nice clothes, doing your hair really nice, putting on make up, having a smile on your face, and people still come up to you are ask if you are OK because you don't look OK. Perhaps that is why my daughter is so angry with me saying I have just given up because I am not letting her know exactly how I feel because I have always tried to have a positive attitude, even though she sees me every day struggle with pain, and forgetting things.
I suppose I wrote this just to vent. I am not really asking for anyone's support or advice. I just woke up in wee hours in the night sore and started thinking again how much pain my daughter must be in. She is the greatest, but it pains me so much to see her in so much pain, not knowing how to ease her pain. I know - If only I was healed!!!! All these problems will go away - yeah right - as if... (maybe my daughter is right, maybe I have given up after all)
I wish I was there to hug you Linda! I completely understand not wanting advice but just needing to get the "stuff" out of you. That is what we are here for. I love you and I will cross my fingers that things begin to straighten out for you.
how long did it take you to accept that you are not going to get better.
now think about your "invincible" 18 year old. how long have you told her how you are feeling.
it takes other longer to understand, how we are.
she needs extra time to understand.
she may also be trying to avoid the unavoidable. if mum IS sick..............
You did the best thing venting and getting it off your chest and even though the Lupus is taking it out of you, your still positive to carry on, it's your daughter making you feel how you are, it's her support you want not her going against you.
Linda i had this simular situation with my parent's when i lived at home my mom excepted it all cared for me the lot but if i was fitting my dad would have nothing to do with me and it all came out in the open the one day when my mom had words with him and said there's times when i need help and his actual words was MY KIDS NOT ILL and till the day he died there was nothing wrong with me and he just would'nt except the fact.
It's a shame really you daughter does truely love you and she can't think of her mom being any other way than what she's used to and Linda she may never except it and i know it hurts but you must do what's best for you even if you need to get a walking stick do it mate.
I'm wishing you all my love from this end xxxxxxxx
I also have the same problem with my Dad. My daughter's not sick she doesn't need pills. I can't take them in front of him.
Steve is right; the 18 yr old is at the invincible, immortal youthful age. And she needs you to be her strong invincible Mom. She will come around. She is going through the stages, it's just tsking her longer
hugs and more hugs
Thanks everyone for your support and encouraging words. My daughter knows I am sick, she sees it everyday. What I think she is struggling with is the fact that there is a possibility that I might get worse because this year has been very difficult for me and I think everything has been escalating too fast for her. She is a person who doesn't particularly like physical affection, but when I stumble or loose my balance, she is there to offer her arm as a support, or will hold on to me as I go up or down steps or when the ground is uneven. Now this is really not like her.
It is difficult for me to explain what it is like. She does talk to her boyfriend about how I am, and when I went out to a breakfast function a few of her friends asked me how I was. I was surprised to find out about how much she has actually been talking to other people about how sick I am. Perhaps she is just frightened about how sick I can get, and I think like Terri suggested she can' think of her Mum being any other way and as Nonna suggested, she needs me to be her strong invincible Mum back.
Steve thanks for the chat yesterday, your advice was so valuable. Also you are right, she needs extra time to understand, and my job as a mum will never change, I will support her through this. After all, I am sick, but she still needs my support.
Im reading your post and all I want to do is cry because you hit the nail on the head. I feel exactly like you do my rheumy has already recommended a wheel chair or possible diasability in the near future but I refused to let this disease take one more thing from me. You are a fighter your post said it all, your not giving up just preparing for the worst and hoping for the best. Rheumy has prescribed the new drug Benlysta, waiting to see if my insurance will cover it. That drug cost 31,000. Anyway you keep on doing what your doing we might not be pain free but we are blessed in other ways. I think the cane just scares your daughter because it means you are getting worse and who wants to see their mom sick. Im sending you a hug (gentle) and feel better. slim
Oh Slim you are the first that I have heard of that was given the new drug Benlysta! Please keep us posted about how it works!
Originally Posted by Linda From Australia
I really hope for your sake your daughter does except you being ill but for her friends to know and you actually finding it out when meeting them, it shows to me, she's needing to open up to other's for proberly their opinion knowing they're her friends plus also her age and maybe how they'd cope in the same situation, as we all need someone to confide in sometimes and maybe this may be her way of releasing plus expressing herself to her moms situation in her own way.
Linda (((((Hugs & Kisses)))) from me mate and i'm really sorry to hear it's telling on you more.