It has been a while since I have discussed the brutal impact Lupus has habitually interfered with during my life. Today has been a total breakdown and I stayed in bed for most of it. Why the sadness infringes on my plans, I don’t know. My last infection, about 3 weeks ago left me with 2 weeks of antibiotics. I thought I was in the clear but redness hit my face and neck like supersonic colors. Of course I got my fever blister and only a little sore in my mouth but nothing like usual. My legs and ankles have become so inflated at times I can barely walk. I do have my special shoes but they are so decrepid I can’t even go to the mailbox in them. So embarrassing but I love them! My main concern now is my lungs. I am very short of breath and my inhaler just is not cutting it.
I am sorry for anyone going through any chronic illness. People will never know the sadness that everyday brings. Some days are so unbearable I can’t even put it into words. The people in our life have to continue their routine obligations so the sadness and guilt become overwhelming. You hurt so bad that your focus on God can quickly disappear and allow the enemy to move right in. I get fearful at times when I am alone. I worry about the future and I can quickly feel my mood change. I fear that I do not love this person that I see. I feel shame for some of the failures in my life. But God sees a desire to love us through our shame and guilt. But, I feel guilt and shame for not always remembering that. Hang tight you tenacious strong survivors. I love you all.
I hate the misology of victim. But, I am a casualty of my mind. My mind does not fully flower and bloom at the sight of happiness. I sit in my gutter and look up at you with excitement at every word you promise. But your promises are fake. They push me down deeper and deeper and i can see no way out. Where did I go? I want so much to be powerful again. I want to love and feel life again. I hear your promises and I know now they are not true. You are laughing at me but in your own sincere way, I want to climb out of this madness but I can’t. What is there to fight for anymore? I feel powerless while everyone around me looks so impressive. I am stuck in this cold wet abyss. Can anybody see me? What is going to happen to me? My voices yell at me, but I count on them so much. I hate them. What is the truth? Why can’t anyone tell me it is going to be alright. Would I believe them?
I am crying out in pain. Why is nobody listening? Why is nobody helping me. I don’t want to be like this but I have isolated myself. I have no true connection with anyone. When my family reaches out for me they are fearful. They act as if I am going to fall apart. Have they seen this in me to many times before? Have I scared them so much with my outbursts that I am a stranger to them? I need them so bad but they have seen this so much. It gets worse the longer it goes on. They love me but I am so angry that they cannot see my pain. Why can’t they feel what I feel? Why are they not like this? I am now changing. I can feel it. My emotions get raw and go somewhere. They hide deep in my head and now I am numb again. My anger turns to rage and my voices are mocking me. Do they want to hurt me or do they just hate me? I push them way back and pull my pleasant disguise forward until the pressure of the pain bursts wide open again.
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.
A thief is thief. A thief is still a thief until he stops stealing, gets a job and give back. God uses human angels to bring comfort to those around us. I walked into church this morning after many weeks of medical trials and I felt the euphoria I had so missed instantly transform my shell and overflow in places that have been hidden for so long.
We began in 2 Corinthians: 5-7. In fact, when we came into Macedonia, we had no rest. Instead, we were troubled in every way; confliction on the outside, fears on the inside. But God, who comforts the humble, comforted us by the arrival of Titus and not only by his arrival, but also by the comfort he received from you. He told us about your deep longing, your sorrow, and your zeal for me and I rejoiced even more. In the translation paragraph at the bottom of the page was the Greek root word Lupe describing Paul’s writings. I felt God’s faithful wink as to say I have seen your lupe: pain, grief, sorrow. That simple word that can cause such grief, reminded me that I was not doing this by myself. Paul also used the word to explain Christian giving should not be motivated by regret (lupe) but by a cheerful heart. I have been surrounded by many words and praises but as I saw my husband and children continuing their walk with God I knew I had an emptiness that nothing could fill. The Christian walk is so much more than sitting in church. We have an obligation beyond anything we could give ourselves.
I began a conversation with my husband as he got home tonight. I was reminded again about our financial situation and the lack of income coming into the house. As the wind and rain blow through, I am reminded again about our financial situation. The shingles on the south end of the house have blown off due to previous heavy wind and rain. We have a tarp over that area and the shingles in other areas are peeled back. As I go out to get the mail I am reminded again of our financial situation. Last weekend a driver took out our mailbox that had originally been encased in a brick stand. There are bricks scattered in an empty lot and a mailbox that is a crumbled mess. Satan loves to hit us in the most vulnerable place. As I walk back toward the house, I am joined by my little blond blue-eyed boy, who is not so little anymore.
Not to long ago he could not put a sentence together. He did not hold a pencil correctly. He had to be removed from every daycare or school he has ever been to. He was a bitter. He had angry outbursts. He is sensitive to noise and would often run down the hallway at school to escape from it. He is dyslexic and at the beginning of the week when the new spellings words come out, you can almost guarantee a call from school. Nobody wants to hear what the family goes through at home. Families often fall apart with the stress and turmoil caused by a non-typical pattern of behavior. I feel guilty as if I could change the madness. Behavior specialists can give good background tools, but there is no situation that is the same.
Lupus finally took me down about a year ago but I fought it for years before that. I was a single mom until he was five. When you are so busy, you do not stop to enjoy what God has given you. It is very easy to look out and see what you don’t have. Day after day you become embedded in a routine that seems so solid that nothing could break the barrier. I would isolate myself because I felt like a bad parent. I could not leave my children with anyone because I was so ashamed. You want to change the behavior but everything you do doesn’t seem to matter. And, it doesn’t get better, it just changes as they get older. You go through the motions day after day.
I never thought I would be so stagnant. Now, I sleep half the day sometimes. I am at the point where my income has stopped coming in. The other day he looked at me and asked me if I was going to go back to work. Before I could answer , he said I am afraid. I do not want you to go back. You might die. He heard me say for so long….¨i cant do this anymore¨! just cant do it, he was scared. I saw him for how his behavior affected me, I never saw him for how MY behavior affected him. He is reading and schoolwork although still hard, gets done in a somewhat sane way. I forget these boys who feel abandoned by their father, have overcome great obstacles . Even though I now am remarried, I am the only parent they really know. When you are a single parent you sometimes feel distant and cold, and removed from the relationship you have with your children. That is the biggest mistake I could have made.
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.