I have been struggling recently with the emotional and mental side of sickness. So many times people we forget to take care of our minds when we are sick and it becomes weak as well. All these scenarios run through your head about the dreams you have had your whole life and you start wondering how you will be able to accomplish each one. My advice, take one day at a time. The worst thing you can do is get inside your own mind. I have not been able to go to work since August of 2012 and have basically been home bound since then unless I have a good day and someone comes over or takes me somewhere. When I am here for days at a time, I end up letting myself think about the "what could have been" and the "what will never happen again".. The devil will sneak his way in so quietly that before I realize it I am angry at my circumstance. When I get angry at my circumstance (having a severe chronic illness) the devil starts grinning from ear to ear because he is slowly defeating me without me even realizing it. I have had to fight daily to stay on the "positive" side of Invisible illness, as crazy as that sounds, because when I don't, the devil steals my joy. It took me a long time to realize that, although I may NEVER know why, God didn't accidentally cause my body to just start misfiring... He didn't just take his hand off of me in 2012 and say "oh crap, I made a mistake"... My God is bigger than that. He obviously has a purpose for giving me this dreadful illness and I have to make a conscious effort to try to make sure I search for what that is. Before I became sick I was the typical southern girl. I was independent, stubborn as a mule, oblivious to how deeply I should love others and many more bullheaded, stuck-in-her-ways kind of gal.... Now, I have never loved my husband and son more. I appreciate them on a level I never thought possible.
When the ability to care for your loved ones gets taken away from you and you watch your husband work night and day to pay bills and you watch someone else have to care for your child, your heart turns to mush and every pain, adrenaline surge, syncopal episode, severe headache, muscle fatigue, tremors, seizure, and every other problem that you have that has kept you from caring for them seems like it is a race and you are just trying to beat it to the finish line. But, all the racing does is cause more trouble and more pain and therefore more setbacks. So the cycle continues. Little Miss Independent just became Little Miss Dependent and you have to have help with daily tasks, even as simple as walking. Being stubborn as mule kicks in at about this point because, of course, who wants anyone to be telling them what to do 24 hours a day, 7 days a week? Every time you wake up, you are told not to overdo it, not to get out of bed, not to stand up without assistance, not to eat that, make sure you drink plenty of water, and the list goes on... Just like an old mule you kick back out of pure frustration and just plain "I don't want to" and in your head you can just visualize yourself crossing your arms, pouting your lips, and plopping down on the floor in an Indian style position as if you were a toddler. Your family and extended family gets beyond fed up with you trying to gain just an ounce of independence back and many arguments play out over the year. You know in your heart that they are just wanting the best for you and you also know they are struggling too.. Their lives have been changed due to this illness as well. You put yourself in their shoes daily, although most of them think you don't due to them thinking you are selfish when you want to do something to get out of the house because it can be a hassle for everyone involved. Putting yourself in their shoes not only happens daily, but it is heart wrenching. You see how each life has been effected all due to you and your illness. Schedules have to be rearranged, nerves are on edge, whole worlds turned upside down just because of one stupid diagnosis. So, have you walked a mile in their shoes? No. Have you got enough guilt to fill those shoes plus the shoes in the warehouses they came from? Yes. You finally realize one day that it is okay to want to get out of the house after being inside for two weeks. It is ok to have to ask for help when you need it. When it becomes "not" okay is when you get complacent and ask for help when you can do it yourself. You will end up hurting yourself and any relationship (family, friend) because that is just being lazy and you may as well just give up. You haven't walked a mile in the shoes of anyone else, but people often forget they have never walked a mile in your shoes either.
When someone is diagnosed with an invisible illness, people automatically start assuming things about you. You will get approached by people who have an imaginary PhD from WebMD who knows all there is to know about your illness and tells you that all you need is to rest, drink water, and lots of salt and you will be fine. You will spend three hours getting dressed when it used to take you twenty minutes and go out in public and be told by someone you haven't seen or heard from in months "I am so glad you are doing better"... They see you upright and breathing and automatically assume you are healed. You lose friends you have had for years because you no longer can drive to get to them. The "we miss you" texts stop coming and the home visits never really even began. You are 26 and are living like an 82 year old shut in who has already lived out the prime of her life. Only thing is, you haven't. You have a son who you still want to run around in the yard with and go to ball games with and go camping with. You have been married for almost six years and you want to still date your husband and clean house and cook meals for him.
Slowly the devil puts into your mind that these things are being torn from your grasp.
BUT I can praise my God because He has shown me that regardless what the devil tries to show me, God is going to bless me far greater than I could imagine. Have I had to learn to be less stubborn and less independent? Yes. But, I also have used those qualities to find ways to be involved in my husband and son's life. Even one good day spent with my family is worth all the bad days combined.
I have learned that God DOES give us way more than we can handle. He doesn't want us to handle it. He wants to handle it. He just wants us to realize it so that we can surrender it all to him. Postural Orthostatic Tachycardia Syndrome is the most annoying, painful, scariest, but beautiful blessing I have yet to receive.
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