Lupus is one of the most cryptic, mystifying diseases on the planet. As a wife and mother I get up every morning to car pools and breakfast and plan my day around doing cloths and arranging dinner. The rest of the day, the part nobody sees, is sweatpants, naps and Netflix. The hardest part of lupus to me is having to explain to someone what it is. Lupus is so different for so many people. But as most of us know, I don’t look sick on the outside but my body is at war on the inside.
I remember as a child the severe leg cramps. I remember getting burnt too many times at the beach and winding up with blisters on my lips. I remember the mouth sores and being so tired some days that I could sleep forever! But I was a teenager. I lived in Florida. I was a swimmer, cheerleader, lifeguard, well and just plain busy. I had a convertible and I loathed in the sun for that perfect tan so I never protected my face. The one thing I did not think about was the photosensitivity to my eyes. We did not have computers when I was a teen but now if I write to long my fore flare begins.
My ten-year old has started to produce the same symptoms I had as a little girl. He has leg cramps and if he goes outside for any length of time his face flares so bad it looks like a second degree sunburn. unfortunately for him the number one cause of his fore flare is his gaming systems. If he plays to long he pops up with a nasty butterfly rash. A friend told me about Gunnar glasses from amazon.com. They will protect him from computer vision syndrome and cut back on the ugliness of the disease. I have not tried these yet but, I am very interested to see if they work.
Maybe that is why Lupus is so relentless. The outside wonders of the world, the vitamin D & C which claim to help depression and give you the boost you need are the very things that make me so sick. The entire atmosphere can bombard my body. So if you see that nice tan glow that makes us look healthy just remember it makes us feel horrendous and scared that at any minute we could feel the wrath of the warm, glowing sun.
Feel Good Together (Photo credit: Wikipedia)
I want to say in advance that this is part of a painful glimpse into an always changing chaotic view of myself. Many know I have Lupus. And, I know there are many diseases out there that people are living with. Have you ever wondered how they feel? (mentally). What are you supposed to feel?
I am at a place that is empty. I have stopped feeling any emotion. I struggle through the day, Then, I get it back together before the kids come home from school. Now, as I recover, I know this place is the worst place I could be. Can you be that numb? I think so. So, when a person is in that state how can you help? Do you quietly think I am glad it’s not me or say you know you will get through this it just takes time.
I usually am an isolated person. I don’t like to talk on the phone or sit with people but, I have a overwhelming urge to help others. I have endured many different troubling life events. I think this is where I became reserved. Writing this post helps me share my feelings easier than if I were talking to someone about “how I feel”. I want to share this with you because people who are hurting might not know how to voice this. Professional help is a wonderful outlet that helps many people. But, this goes out to those who just can’t quite put your finger on what is wrong.
Even as I feel numb and depressed I know God is with me. It seems hard to accept but he is there. When you get to your dark place of your life please take a moment to pray. (or write to me!) I can’t tell you what your miracle might be but, I can tell you that being alive is a true miracle. You are the only one God made. There will be a change at some point. Being still and waiting is the hardest thing to do but that is what God has asked of us.
Have I told you today that I hate Lupus? I hate waking up, walking out of my bedroom and hearing….Nothing. Everyone has already started their day. I look around the house and all I see is a mess. Someone forgot their Friday folder, Someone left the milk out, and cloths are everywhere because of course nobody folded the cloths in the dryer so they were missing all their essentials. Sometimes it feels like everything is crumbling around me. Did I tell you I was a perfectionist? I might have forgotten to mention that. I guess that is getting better because before if I saw my husbands cloths lying in front of the hamper I would lose it. I am not sure why the boys in this house cannot actually dump the cloths in the container instead of right in front of it? Anyway, I am sad. I cannot stay awake more than a few hours at a time. And, now I am boring. I am not a fun mom anymore. My family tells me they love me. I know they do and don’t see things the way I do but I don’t want my life to be like this. Can anyone make it go away? Sorry everyone, I just need to vent. Lupus will not win! It may today, but not forever.
I asked my children to tell me how they feel about Lupus and how they feel about me being sick. These are some of the things they said. The writer in me had to correct some grammar but I love we got to the surface of their feelings. I hope to get even deeper because they are the future and the future of medicine. I hope to unleash a passion in them. Well, maybe I am getting to deep at this point.. Right now what I really love is that they love me. They hear what is going on and they care about the changes going on in this family.
My mom sleeps in late, is always sick, and has strep . My mom is sick all the time, but I can sill have fun with her. At the end of all of that, she is the best mother in the world, no exceptions! by caleb……… It is hard when my mommy is sick. I still have fun. We get to watch movies and do laundry, She watches us play on our scooters. I am angry sometimes. I am angry with the doctors because they won’t make a medicine to help lupus. But it still won’t break us from our love. I am happy when she feels good. I love mommy with all my heart and soul. We pray every night like our mommy and me time….conner