If you only knew....

If you only knew how each day, I struggle to wake up in the morning. Not because I do not want to, but because my body will not allow it. Almost every morning, for 5-10 minutes, especially if my husband needs to help me wake up so that we can be somewhere that day, I am literally trapped inside my body.

What I mean by that is, I can hear everything my husband is saying, I can hear him say "Please baby, wake up, we have to leave soon." But I can't open my eyes, I can move anything, and I can' t respond to him. I'm blessed with a very calm and patient husband, but no words can describe the fear that comes over me when one of these episodes happen. I try not to focus on them, because for the most part, they only last for a maximum of ten minutes.

But then, there are days that I realize how much my life has changed so very much from what it used to be. These changes have happened over the course of about 14 years, some of them gradual and some of them thrown at me like a ton of bricks in a short time. My reality shifts.

If you only knew how very much I actually miss working full time. I miss knowing everything about every resident in my facility. Being so connected to them that I could tell by looking at them for less than a minute that something was very wrong with them. While stressful, those busy days helped me feel alive. They made me feel like I was making a difference in the lives of my residents and their families. I spent more time there than I did at home. The residents, my co-workers, and the resident's families became a part of my own family. I miss being able to keep an insane amount of information straight, knowing resident's information so well that I didn't even have to look it up. There were days I felt like I was running a hospital, but somehow I did it. And sometimes I get glimpses of my former life and I cherish them. Each and every moment.

If you only knew the hours, the days, the weeks, months, and years I have suffered. At first it was little things I could live with, a little fatigue, some minor stomach pain, headaches that were bad but not unbearable. Crises were few and far between and far easier to deal with. Through the grace of God, I have made it through the trials this disease has brought to me for the past 14 years. And while I know that I am so much more fortunate than most people with Mitochondrial disorders, because I get glimpses of my former life, and I still have a life. We have lost so many children in our community in addition to young adults, some older and some younger than myself. Each and every death hits me like a ton of bricks. With the adults, it's just another reminder that I never know when God will call me home and when this disease will prevail over my earthly body. With the children, it's a reminder that I do not know if my children will be cursed with my genes and be afflicted with this disease also. And there's no way to know for sure. It gives me a glimpse into what could be my future life. While I know it's a very real possibility I will have a child with Mito, that has not hindered me from wanting to have children of my own. People will have their own opinions about this matter, and their opinions really do not matter to me in any way. I truly do not care what people think of me, and it's my life, my family, and none of their business. I realize having a child with Mito will be heartbreaking, horrible, and probably bring more guilt to the table than I even want to imagine. However, I realize we suffer for those we love. Just because someone is disabled or ill, or dying does not mean they are not worth something, that the heartbreak you feel from watching them and helping them as they suffer or die is not worth it. We are called to be Christ for one another, and helping someone through immense suffering is one way we can do that.

If you only knew the constant pain and nausea I feel. The pain is constant, and there is no part of my body that is immune from the pain aside from my nose. Pain that is indescribably difficult to treat. Partially because there are multiple disease processes causing the pain. I have Peripheral Autonomic Neuropathy which causes nerve pain as well as demise of various nerves in my body. Mitochondrial disease causes muscle wasting and atrophy, another very horrible and intense type of pain. For the most part this affects my legs, which is horrible because I use my legs to walk and do so many things. Chronic bladder pain and spasms is likely linked to my Autonomic/Mitochondrial issues. At first it was called Interstitial Cystitis, but now it is looking more like a type of neurogenic bladder caused by nerve damage. Mostly this pain happens most intensely at night, which makes it extremely difficult for me to sleep at night, but there is no time of day I am immune from bladder pain. Some of my pain is caused by eating, something I need to do in order to survive. However, the entire digestive process hurts from beginning to end, and it goes so incredibly slowly for me. The pain of having food from hours ago sitting in the pit of your stomach is something I can't describe. The bloating that happens every time I eat, feeling like my pants don't fit even though most of the time they are falling down. Some people say we endure purgatory on earth, so that our time in purgatory after our death is less. I've been there, but I can also say without much hesitation I have also been to hell more than my fair share of times.

If you only knew the feeling of crashing, losing all control of your body. Knowing your blood pressure is dropping to almost nothing and your heart rate is going through the roof. Hearing your husband talking to you, pleading with you to respond and stay with him but no matter how much willpower you give, you simply can't. Your body will not listen. Slowly, your body goes into a state of unresponsiveness, which often but not always leads to some type of seizure activity. Coming out of a seizure episode means confusion. You can't imagine waking up on the floor, drooling all over the place, seeing a man you think you should know but realizing you have no idea who he is. Trying to figure out where you are but not being able to. Feeling fear that you can not move, can not speak, can not figure anything out. Having someone you don't know hold you and tell you everything is going to be OK. Having him tell you that you are married, showing you your wedding ring, telling you your love story. Yet, you still can not recall everything he is telling you. Then, he starts singing a song to you. Slowly, you start to remember the lyrics, what they mean to you, that this was your very first song that you danced to as a married couple. The memories begin to flood back.

If you only knew the constant struggle of eating. Knowing you have to eat to survive, but knowing how much pain eating causes you. The waves of nausea you are no longer immune to, waves that not even Zofran can cure. Taking a few bites, being exhausted and feeling so full that the next bite gags you. Even though the food tastes good, you know that the battle isn't worth it because you won't win. So you resort to fluids. Which in turn makes you need to urinate so badly your bladder constantly spasms. There is no happy medium and no easy way to take care of this issue. Despite your best efforts, you rarely see your weight over 95 pounds. You remember the days you used to weigh over 100 pounds and were happy with the weight you were at. And you miss those days. You wonder what it will take for the doctors to become concerned enough to do something.

If you only knew the encounters I have had with doctors, over 20 of them. Only a handful of them don't automatically go to a psychiatric cause. Those that do understand, try to fight for you for a time. They do the best they can for you and run out of ideas. You see the sadness and heartbreak in their faces, because they know they've done all you can and yet they see your suffering and pain. So you have to end your care with this doctor, because you can't put either one of you through it anymore. You desperately try to find another doctor, one who shows promise and tries to empathize with you. Despite yourself, you begin to feel hopeful. You feel hopeful that this doctor can help give you a better quality of life. But you realize that none of this is an overnight process. Every night, every day, you pray to God that He gives this new doctor the wisdom and guidance to give you the best possible care. Despite the struggles and kinks to work out, you realize (with God's help), that this woman was sent to you by God to help you. To give you the care you've needed for years. God shows you that you need to be honest with her, that you need not hide anything from her, and that He will guide her and you in what is best. So you press onward, believing and hoping that this is finally a point where you don't have to struggle to find help.

If you only knew the nights I can't sleep. Pain prevents me from sleeping, and during those long nights I often pray to God, desperately for earthly healing. I can not count those nights. I can not count the days I have prayed for this. God always answers our prayers, but it is not always what we want to hear. Over time, you realize that God is telling you that this is your earthly burden. That you live in a fallen world, and that this disease can either steal you from the rest of the world, steal your life, or steal yourself, or you can form a new life and a new understanding of the world. There is no way to make sense out of this kind of suffering. God shows you that you can be a source of love and support to all who are suffering. And through that, you learn that maybe you can tackle this, with the help of God and family and friends.

You continue to fight for answers, for a better quality of life, for more awareness and someday- a cure- for your disease. You hold your loved ones more closely than ever. You appreciate life and love and people more than you could ever expect. People might call you courageous, brave or heroic, but in reality all you are doing is your best. You pray that God gives you enough time with your loved ones, but you realize no amount of time will ever be enough. Not with your husband, your best friends, your Sidekick, your big brother, any of your siblings, your family, your Pseudo Moms, your co-workers, or your residents. But you realize also, that you have an incredible support system that will fight with you and for you as much as they can. And someday, God will take you from your earthly exile and bring you into everlasting love and peace. That is your only consolation.

Until then, you fight like hell.