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)
Diagnosed with Lupus - 22 June, 2010