January 05, 2005
Feelings of Isolation and Not being Understood
The Lupus patient may have to bear the burden of the illness alone, either because partners do not see a real and deserving condition, do not understand the nature of lupus or believe it is their life that is being damaged and thus turn away.
How true for me the above statement rings. Seems like my husband just does not get it or just does not want to and I am not sure which it is. I have always been the caretaker as most women are, and I am known for being very obsessive about my home and the conditions we live in. I like knowing everything is put away and will rarely go to bed at night if one thing is out of place or if there is even one dirty dish in the sink. So imagine how frustrating it is that what used to take a couple of hours now takes an entire day and then when I ask for the garbage to be taken out it is met with hostility! Mind you-I do all of the cleaning, I work full-time, I am responsible for the children and yet many people with lupus and psoriatic arthritis are on disability because of their illness! I have a copy of the rhuematologists report where he put I have SEVERE psoriatic arthritis and have trouble with all functions of daily living-even after seeing that my husband acts so put out if I ask for help. It is so exasperating! Then he blames my frustration on the meds I am on!! OMG that is like blaming a woman who is cranky on PMS! I told him-MY MEDICINE DOES NOT MAKE YOU LAZY!! I know it is a lot ot adjust to after almost 7 years of not having to do anything but I would not ask for the help if I did not need it-I have always been very independent and not needed anyone or anything-so if I ask for your help-believe me I need it or I would not ask. No one has ever accused me of being lazy in my life.
I am Buddhist and therefore try to live my life accordingly, however it is getting harder each day and each day I wonder if I would not be better off out of the relationship I am currently in. My husband acts like it will kill him if he has to move from the chair to do something. Even with all of the pain and swelling I have I can not sit still for any length of time my mind does not work that way. When I first came out of the hospital I was surprised that all I wanted to do was lay around for the first few days-I have never been like that. But once I realized this was my new reality and I was going to have to learn to live with it or let it live me I had a choice to make. I chose life and I chose to keep on keeping on until I can no longer do so. I am a realist so I know it may come to a point especially if there becomes major organ involvement that I will have to cut down considerable but until then I am going to do what has to be done every day even if it means taking extra pain meds to get through it.
And it is not just his refusal to help with the daily chores required to run a home-it is the way he talks to me and the children. The only time I raise my voice is to warn of impending danger or after asking nicely three times and getting ignored by my teen-agers. I have always been like that-I believe people do not need to be talked down to you can get that anywhere. In your home you should feel safe, loved, protected and like your home is a sanctuary from the rest of the world. But my husband thinks nothing of screaming and cussing at the top of his lungs over EVERY thing. It is ridiculous to me and to the children-we are tired of hearing it over and over again. He talks to everyone in the home like we are nothing more than people to be barked at over and over again and he wonders why I ignore him anymore. I try hard to not let it get to me because stress is one of the things that can bring on a flare and since I still have not recovered from this one I do not want to make it worse by getting upset all over again but it is so hard to not cry. I try to tell him that you do not talk like that to people you love but he says it is the way he has always been and is not going to change.
On the plus side-he has always helped me support my children as I do not get child support from their father and he has never ever complained one time about that and I know he loves me and the children I just wish he would quit yelling and cussing and start helping me around the house-right now I need him and I have tried talking to him to tell him that but he does not want to hear it. Any suggestions would be greatly appreciated.
Posted by Lisa on January 5, 2005 04:13 PM