Today is one of those days. I really don't know what exactly is wrong with me. I only know for sure that something certainly is. Some days I do ok at pushing through my physical fatigue and pain. Some days I do not. Today is one of those days.
I get so angry with myself. Why can't I be ok most days? I tell myself to try harder. Do better. I tell myself how it's so unfair to my children and my husband to deal with me struggling. When I can't push through the affects of my chronic disease and the depression that sometimes in itself is more overwhelming than the actual lupus, they are left in essence without a wife and mother. Or even worse, they are left with a tangible person who is here but is unable to be the wife and mother they deserve and need.
Is it so unreasonable that I would wonder if their life would be so much happier and enjoyable if they didn't have to deal with me and my lupus? It probably makes me selfish to think thoughts like these. But today, is one of those days, when I have these thoughts.
I love my children and husband so much. I however, have for a very long time thought that someday, somehow, my lupus would go into a real remission and I could be the me I sometimes pretend in my head, I am. The me who is happy, healthy, strong, funny, basically,...the wife and mother my family deserves.
I hear things come out of my mouth that I hate myself for saying. Things like "I'm too tired", "I need some down time", and my husband's personal favorite..."I can't". Where the hell is the line between accepting your physical limitations and being a whining baby? I can't seem to find the damn line.
I play that lupus will go away mind game a lot. Maybe it's my way of tricking myself so that I don't completely give up on myself. But then what happens is this. I feel better for a little while and I go gangbusters. Trying to "make up" for when I was sick. I clean everything I can clean, I try to be funny and just all out super mom. Then, here comes the predictable part folks, I crash into a wall. Usually figuratively, although sometimes literally too. When this happens it's like I'm facing my diagnosis and my limitations all over again. Instead of accepting it and rolling with it.
How do people do that? How do people with a chronic disease like me stand themselves? I keep trying to figure this out. I know I'm derpressed. I know I have huge issues. I feel like a hamster on a freaking treamill. Atleast hamsters have shorter life expectancies. I love my family. I want to be someone who contributes to their life. All I can see that I am right now is a hinderance. If your either contaminating or contributing a relationship.......................guess I know where I'm at with this.
Some days I have a better attitude. It usually corresponds with my physical condition on that given day. When I can be productive and "contribute" I feel happier. Today is not one of "those days". Today I hate myself.
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1 comment:
I also have lupus. Diagnosed in 1988. I am currently in remission. Hang in there. Depression is built-in with a lupus diagnosis. Your body has betrayed you, and it sucks!
Yep, some days are better than others.
I wrote a book: Dianosis: Lupus: The Intimate Journal of a Lupus Patient, by PublishAmerica, about my struggles with this damn disease. It's available online at Amazon.com and other on-line bookstore sites. I just haven't had the energy to get it into brick and mortar stores yet.
I took my journal entries from the first symptoms to my most recent remission -- If you have a lupus support group in your area, please attend. You will find others just like you. And your family needs to go, too, to understand what you're going through, because, like most of us, they tell you, "But you don't look sick!" If you don't have one, why don't you start a group? Go to www.lupus.org and find out more current information. I recently attended a seminar where the outlook for finding a cure is very promising.
Best,
Marilyn Celeste Morris
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