It has been a really long time since I really wrote one of those pouring-out-my-heart kind of entries on this blog. I guess because there is nothing I dread more than hearing someone “lament” (borrowing from J.D. Farag in yesterday’s update) all their woes that are dragging them down, and I don’t want to be that person doing the same to you.
I think that depression and mental illness are some of the cruelest harshest conditions that humans suffer. When I think of the tragedies of life, I remember that these things are a result of the curse of sin. God wants better for us than this.
I went through a “personal hell” while I was seeking help for the bone-crushing fatigue I suffered through the years of my thirties and into my early forties. At the same time I was raising my little ones.
The last time I went to my primary physician for my annual physical in August, my blood pressure was up again, though I already was on meds for that. He made a comment that I am sure was not calculated to be cutting, but that cut me nonetheless. He said, “well, I guess we can bump up your dose and if you ever decide to start exercising and lose some weight, we can always decrease it again later”.
This is not a bid for pity. However, even doctors don’t seem to grasp the extreme fatigue factor that accompanies narcolepsy. I was glad to see our local news highlight Narcolepsy in a young girl in our area last week. The doctor stated how misunderstood Narcolepsy still is and the ignorance of the medical community about it. It was a small consolation for me.
“Deciding” to exercise and lose weight is one thing, doing it is quite another. It takes energy to make energy. I have joint and muscle pain as well, and in fact I started this blog during the time that those aspects of my particular health profile were at the height of torment. My same doctor who made the above comment, was the one who hit upon a medication that helped. It is a med that was marketed as an antidepressant, however it has such an ability to decrease pain that some doctors now prescribe it post-operatively.
The fact that I suffered severe depression for over a decade was not a factor in the choice of meds, since by that time, I had finally been delivered out of that oppressive darkness. I think the treatment for the sleep issues made a big difference, but I mostly believe it was an answer to prayer for healing from that most insidious of illnesses.
When it all started out, I was thirty, previously very energetic, of healthy weight, and still “youngish” and some doctors were sympathetic to my plight, even as they failed to figure out the root of my problems. I found though, that as I aged, and as my weight crept up, more and more I was immediately dismissed as someone who just let herself go. More and more the doctors would say things like, “well, you’re nearing middle age, and you DO have extra weight on, so if you would just clean up your diet and get moving, you wouldn’t be having these problems.
It is so disheartening, when your mind is hardly working, and your body is exhausted and it takes supreme will and effort just to keep going to work and coming home and being a mommy, and still fighting to be your own advocate. It is exhausting and disheartening, to have to continuously repeat your long history and beg and plead for someone to listen to what you are saying. And as medical knowledge increases, docs are more and more “specialized” in their own singular “sliver” of medicine, that patients are treated in pieces-parts. If your primary thinks we need to have someone in Neuro look you over, it is entirely possible you will go there, have thousands of dollars in testing, find nothing, and the reports all go back to your primary, get filed in your chart, and no one talks to the patient about any of it. That is exactly what happened to me. While I was losing my ability to walk, and so weak I could not hold my body upright in a chair. When I called my doctor to once more plead for some kind of guidance, only then did it come to light that the neuro guy had recommended a rheumatology consult. Can you say dropped ball?
Sadly as medicine in this country becomes more and more socialized, that is how it will be for everyone. I thank God profusely that He led me to a doctor that finally was willing to look at the whole picture and diagnosed the narcolepsy, and that even though my primary did not apparently even see the report from the consult he sent me to, (staff member filed without bringing to his attention?) that in the end, as a Christian who prays about his patients, he was the one who “chanced” upon the medication that now essentially controls the arthritic and fibromyalgia pain and that in conjunction with the one hundred and fifty-thousand dollar medicine/per year that I take for the control of the narcolepsy, have given me a quality of life I never thought I would have. But meanwhile, I have aged and even as medicine works to control and counter the effects of my several conditions, time ravages my body with the effects of age. At fifty-one, I have already been through “old age”. I was “younger” in my forties than in my thirties. The aging effect of not sleeping for a decade is not to be underestimated. I was like an Alzhiemer’s patient in her seventies, wracked with osteoarthritis, weak, and very unsteady on my feet, while raising my babies!
If there is someone in your life who has narcolepsy, take it from me, the very most compassionate thing you can do is study up on what that means. Best way to do that is not to just read what the scientists and doctors say, but go on You Tube and listen to the stories of people who live it. I was diagnosed bipolar due to the effects it had on my moods, and state of mind, and I was suicidal. I was hallucinating. Read up on the effects of sleep deprivation. People think Narcolepsy is someone sleeping all the time, randomly and uncontrollably and therefore they seem to think narcoleptics ought to be the most well-rested people on the planet. NOthing could be further from the truth! Narcolepsy is a complete and utter malfunction of the body’s “sleep apparatus” so to speak. Sleep that is normal and working as God designed it to, is restful and restorative. Narcoleptics never get restorative sleep. Think of the times you were stressed and suffered a temporary couple of weeks of not the best sleep because you either couldn’t get to sleep, or you kept waking up. Or if you are a parent, think of how you felt in the first months when baby woke up every two hours to be fed. That is what narcoleptic sleep is like. Exhausting! You literally wake up exhausted from trying to sleep.
You end up functioning on pure adrenaline. Which most people know amps up cortisol output and burns out your adrenals, and from there it is a cascade effect on your entire body and all of its systems. Now imagine living that way on no true rest for over ten years. It is a known fact that people who suffer from untreated sleep deprivation can suffer from related medical problems such as high blood pressure, heart attack, obesity, heart failure, stroke, psychiatric problems, mental impairment, attention deficit disorder, fetal and childhood growth retardation, among other dangerous health complications. I submit that when sleep deprivation is untreated for decades, the reversing of this damage is not going to be easy. You never really “make up for lost sleep”. Changes become pretty much permanent.
Metabolism is effected, brain function is effected, affect and mood are effected. Everything is effected!
So, why am I even on this subject today? I guess because it’s time for my quarterly appointment with the sleep specialist. But also, I focus in this blog on the developments taking place in our world that point to the soon coming of Jesus. My conversations with the handful of folks who, like me, can scarcely find other professing Christians who even want to engage in discussions of a prophetic nature or upon the obvious rise of evil and the precipitous and precarious nature of life in these times, contribute to my already-profound-sense of alien-ness in this world. Not that I am not able to go out and rub shoulders with other people, dinner with a friend, the symphony, a normal trip to the grocery store, but for me it is always with this sense of being a foreigner in an unfamiliar land. It never ceases to blow my mind, realizing that just like the scriptures foretold, people are going about business as usual, as if the world was not fast approaching catastrophic changes that will impact every human, animal, plant, ocean, mountain, lake, city, nation, continent on the planet.
Do we start walking down the street in a sandwich board, painted with the words “Repent, the end is near”? Churches are either proceeding in autopilot in vain repetition week to week, month to month, and year to year, on tradition, or the other end of the extreme, they’ve built coffee houses and play lands in the “vestibule” and employed rock-bands and tee-shirt cannons, and disco balls in the “sanctuary”.
I thank God that He has given me a handful of people in my life who, to the extent that anyone can, pretty much accept, if not understand, what it is to live with Narcolepsy and other conditions that are silent and invisible, and I thank God for the doctors and medications, despite the bumbling path to eventual diagnosis, and I thank God for the grant that pays for the lion’s share of the cost of my meds which insurance does NOT cover, and at the end of the day, though I try to be productive, and positive, and contribute something and stay occupied and engaged, the absolute and unashamed truth for me is that I can hardly wait for the trumpet that will signal an end to the toil and instability and struggle of this life. I do not wish to have the end descend prematurely, but God knows that the same sun that softens the wax, hardens the clay, and thankfully that is up to Him to know and the timing will be according to that last person in the Gentile Age who has a heart willing to receive Him.
As I continue pressing on, I admit that of late, I am acutely aware that it is getting harder day by day. And thought maybe it ought to be acknowledged. It is not our imagination. I have been in states due to my medical history wherein it was not always easy to trust my own perceptions. I do a huge amount of “self-talk”. That is to say, when I feel the undertow threatening to pull me down into the slough of despond, I consciously start talking to myself as someone might do for someone who is losing blood or losing consciousness as they await the first responders. Does that sound like drama to you? Probably does to most who might read this, but it is the truth for me. I don’t pretend to understand or be really even “ok” with the fact that “just being” is sometimes really hard for me. It sounds so pathetic, in this self-sufficient society that prides itself on how much one person can accomplish in a day. The scriptures say that His strength is made perfect in our weakness, and that spiritually when we are weak, then He is strong in and for us. It is a darn good thing, is all I can say.
The older I get, the more I don’t understand. The less I need to have all the answers. The easier it is, frankly, to just lean on Him and trust. I can kick myself and lament my own seeming uselessness, my sense that the world and life are all going on without me, having been knocked out of the game by “disability”. But I think also I know something a lot of those “whole” and busy people whizzing by outside my door, do not know. You can fool yourself into thinking you are wisely planning for your future, for retirement, for that rainy day. But everything you are putting by, can be taken from you in a heartbeat. Fire, financial collapse, one second of distractedness on the freeway, cancer, some homicidal or demon-possessed maniac who invades your home in the middle of the night.
So negative, huh? People believe nowadays that just thinking those thoughts has the power to bring those kinds of things about. Karma. Negative energy. This is all a result of conditioning, through education, movies, television, propaganda of the enemy. Not like Tokyo Rose, nothing so barbaric as wartime psy-ops, or is it? Actually, yes, that is exactly how it is. The real crux, though, the one truth people still just don’t want to face, is that the enemy is Satan. The enemy behind wars, the enemy behind sickness, mental illness, injustice, poverty, suffering, is not only Satan, but the rebellion he represents and which has infected the entire human race at the fall. No, that’s a “dark age” concept. Enlightened folks don’t believe that nonsense anymore.
Well, I do. I believe the Bible. I believe God created the world and everything in it. I believe that Jesus came and He is coming again. I believe He is going to catch away His church soon. I don’t care how many “believers” call the “doctrine of rapture” a lie spawned by Darby, I find their vehemence merely further confirmation that along with all spiritual truth, sparks such outrage. Satan can’t stand it. It frosts him for me to sit here feeling peace despite how hard he and his are all working to stir up fear and conflict and doubt and dissention. I used to feel like I was swimming through Jello, as a Christian in this world. When it seemed even the other Christians were unperturbed by their own consciences when they lived like the world. Until I realized that God really wasn’t exaggerating when He said it would be as it was in the days of Noah and Lot.
I wonder that He has allowed me to see. I ask instead of “why me” about the illness as if it were keeping something from me, instead “why me?” that God should be so merciful as to sideline me from the unimpeded march toward the edge of the abyss, the world and even so many professing Christians are engaged in.
I realize how merciful He has been. I look around and I know I have pointed out to many of the pastors I personally know, how we just proceed from week to week in ritual and tradition, and how the Holy Spirit is far from free to move in our churches. I have had many pastors respond toward me in much the same way many doctors did. With arrogance, or patronizing or dismissiveness and sometimes even outrage that I would dare suggest that something was happening that they are missing.
Yeah, since I still am Earthbound, I do still have moments that, while having to function in this world, I forget momentarily that I am a stranger in a strange land. I “flashback” sometimes to that sensation of trying to swim through Jello.
But some day really, really soon, I am going to fly. Someone says “you cannot actually believe that nonsense can you?” Oh, yeah. I do. I sure enough do!!!
I’m going to fly right out of here. A trumpet, and a shout. Will there be millions of cars crashing on the freeways of America, airplanes crashing, patients disappearing from operating room gurneys? Only eight made it through the global flood on that ark. They waited upon the Lord. God closed and sealed that ark door, after telling Noah to take his family on board, in faith they remained in there, not knowing when the rain would begin. The animals came, prompted by God, Noah didn’t go out and round them up, they just came. When the week was over, God closed the door. God sealed the door. But when the flood was over and the waters had subsided, Noah himself opened that door. That means Noah could have opened that door anytime. He stayed and his family stayed, by faith. They believed God and it was counted to them for righteousness by God. I feel it is a mercy that God arranged things in such a way I can’t hedge my bets. It’s either trust Him or there’s no other hope.
I encounter people all the time via this blog and my reading and viewing of videos, who are still struggling with whether to believe God. Even while they are sounding the alarm, they are hedging their bets by storing away food, ammo, preparing to have to endure the Tribulation, even while wishing that they could engage in the “wishful thinking” of a Pre-trib rapture. I’m sorry you’ve been deceived and had your hope and peace stolen.
I man, that is why HE calls it faith. It is believing without having to have all the answers. It is believing what doesn’t seem possible because God is so much bigger than we even realize. It is having the faith of a child, and children have the ability to believe in Santa and the Tooth fairy. But Santa and the Tooth Fairy didn’t write a Bible.
God did. He doesn’t ask for blind faith. He gives us plenty to hang our faith on. But the problem is, people don’t want to dig into it to get that toehold and they still want to cling to their own sufficiency and depend on themselves.
Capable people naturally feel either sorry or disdainful of people who are not as “whole” as they are. God’s delightful little secret is that being dependent is an unspeakable gift. You ask anyone who has a down syndrome kid or the parent of a child who is autistic and doesn’t seem to have language, only to have them start typing on a computer one day and tell you all that they know. God doesn’t just hand things to us. He knows that ease breeds arrogance. His ways are not our ways. The delusion to which the majority of the world is now subject to, does not negate God’s Truth, in fact it underscores it. So be of good cheer.
Trust Him. Even when you are doing all you can to make the best of a bad situation, you have no idea how much He is still the one making that possible. We humans want credit. It is what it is. The problem is, few people know “what it is”.
If you are struggling, I’m talking about Christians who truly do know the Lord, and want to be obedient and like Paul, find you still contend with the flesh, and still succumb to the discouragements the enemy blasts your way nonstop. Just hold onto the Life Preserver, and you will rise back up to the surface where you can breathe.
I don’t have to know anything else. That is enough. He’s got me.