I Slept….Again!

Good Tuesday, August 21, 2018 to you. I have great news to report! I slept 12 hours. The second day in a row of extended, uninterrupted sleep. Yes, I went to bed with the flu-like symptoms of an upset stomach, headaches and body aches but I slept comfortably (for me) — except for the severe dizziness I would feel when I turned or got up to use the restroom.

Have you ever been diagnosed with Benign paroxysmal positional vertigo (BPPV)? It is so unpleasant. It is described as the sudden sensation that you’re spinning out of control. Like a top in hyper motion that is somehow now in your brain. I have a video of how my eyes responded to BPPV soon after my brain injury in March, 2016. I spent a few days being treated by my physical therapist as she manipulated my head and my body rolled along at her command. I threw up, i belched hundreds of times, my eyes gyrated up and down as if on a yo-yo string and the walls of the room melted. Waves of horizontal movement occured and vertical melting from top to bottom also happened. I was miserable until the symptoms ceased. Well guess what? I’m beginning to feel those things again. I don’t know why but they are intensifying since beginning these dives. There are techniques to try at home and if they don’t help me, I will call my physical therapist and ask her for an appointment.

I am in the chamber at 1.3 psi. Its interesting how the chamber has built-in valves that let a little air out it the pressure gets toward the upper part of the blue line. Again, I am baffled by technology. I have the cannula in my nostrils. I have the cool towel around my neck. I have the battery operated fan blowing at my chin. I’m comfortable. This zero-gravity chair is so comfortable. I brought in my glass of iced coffee without a lid! I don’t want to experience that mistake again! The coffee is to sip at my Dr’s request. He said that one of my medications can be intensified with the increased pressure so he wants me to raise my heartrate slightly with the caffeinated coffee. I brought my cell phone in like I do every day but I won’t necessarily use it. I took a picture at the beginning to document the dives with pictures too.

I saw that there are hyperbaric chambers used for cosmetic purposes in the Los Angeles/Hollywood areas. That could be an added bonus for me! YAHOO…I need all the help I can get.

Today, I want to focus on the symptoms I live with since my fall at work where I hit my head on a stack of plastic arm shopping baskets. You know the ones you pick up as you enter the grocery store because you are only picking up a few items!  hehehe

TBI (traumatic brain injury) causes many symptoms. I’m going to focus on those that I struggle with currently.

1)Struggling to stay focused or on-track with you if we are talking. I used to be able to multi-task and now, just getting one task done or staying with you as you are speaking to me is very hard. I loose a thought so easily. I get lost in trying to figure out what your last sentence really means and you are saying something else that I have no idea about. Its not you. Its me. Processing a simple word like “pencil” takes me a while because I have to think in the word itself and then I have to find a reason for you to be talking about it. By that time you are talking about something else I have never heard of. I give you those stares as if I am saying, “Who are you? What did you do with that pencil?” Or I am trying to explain something to you and in the middle of the sentence I fumble and hesitate and bore you in the waiting. Another example is baking. I loved to bake before my injury. I still do but now I have to find the exact recipe I liked. Then I have to lay out each ingredient in the order that they are written in that recipe. Then I have to go over the list four or five times adjusting every item on the counter. Then I begin the instructions and if I get lost in one of the listed tasks I panic or walk away and forget that I was baking something. This is a terrible struggle I have. I choose to continue talking with you. I choose to find the word I couldn’t come up with. I choose to bake my favorite recipes…it will just take time. I have to find patience with myself. And I hope that you find patience with me too.

2) Vision problems. I could write until midnight tonight about all of the vision issues I deal with. Prior to the fall at work I only wore reading glasses occasionally.  Now I must wear these prism glasses when I am awake. Prisms bring the visual world into clarity. I do not have depth perception and everything blurs or doubles without these glasses on. I also perceive the world around me as dull and lifeless without my prisms on. I do not like glasses. I do not like pushing them up the bridge of my nose. I do not like seeing the edges of the frame. I do not like how dirty they get. I do not like carrying a glasses case and worrying about loosing my glasses when I take them off to take a shower or go to sleep. I would rather not have to live with them at all. I must. I have to. I have no choice. In the early morning my eyes are blurred from sleeping so I run into walls and furniture. I put my glasses on to survive. How sad is that? You do not look real to me without my glasses on. I can not walk across the street to our son’s house without them on because the world is not natural and slopes straight down ahead of me and to either side. If I am at church and I am watching Garrett preach, he begins to grow a wider leg. That is something you would not want to see as this thin guy gets blurry and thick and even if I blink its still distorted. Reading is impossible. Looking at the words jump around and change position is terrible. I read just fine for a while on the computer screen as long as the light is very low. Forget movement on the tv or while I am a passenger in a vehicle! Its miserable. The oncoming vehicles frighten me on a two lane road or highway. Driving through Steamboat is terrible. D has to drive in the left lane because passing parked cars and other vehicles to our left driving faster then us messes with my brain. I can’t lay back while driving because my body then is seeing all of the terrible movements and overwhelming me. Give me a shot of something strong….o yeah, alcohol would make me feel worse.

3) Headaches. O my goodness! Someone has to invent some kind of hammock that is suspended from the ceiling that I could place my head in so that it is secure and rests comfortably without any sway or movement from side to side unless I want it so…that’s while I sleep. My head hurts in every place that I lay it while I try to sleep. During the daytime I have a constant numb headache across my forehead. I have vice-gripping headaches at my temples. Sometimes they are so painful that I ask D if I can use his on the workbench outside to validate how bad it hurts. Don’t worry, I haven’t tried it. Then there are the headaches that are caused by light and sound. Our house is dark for the most part. Sounds are limited. Outside noises send my head into an abyss. I literally find myself imagining going deep, really deep into a dark place to avoid a phone ringing, or a knock on the door, or my little dog barking, or the neighbor dogs barking or a car horn blowing or a lawnmower being used. I use earplugs that are designed for people to use at concerts or on stage while playing loud instruments because all of these noises cause migraine-like headaches. Then there are the terrible headaches I live with 24/7 across the back of my head. They are caused by anxiety and tension and unresolved neck problems following the whiplash I experienced when my forehead hit with my neck hyperextended and the coup-contrecoup injury to my brain. I am drug intolerant. Simple sleeping pills send me into deep depression. I won’t do any opiates. I use tylenol and ibuprofen occasionally but I am concerned with the cummulative effect of taking them over long periods of time. When I am ready to throw in the towel because of the head pain I take a flexeril (prescribed muscle relaxant). Most often I just live with the pain and  D always knows when its terrible. Its written in my face and eyes and my countenance is not so good.

4) Sleeplessness. What a terrible part of this journey. I need rest. Everyone needs to sleep to rejuvenate and revitalize themselves. Over the past 29 months, overall I have only slept 1/4 to 1/3 of the time I should have slept. Hours of remaining awake takes quite a toll on my mental, emotional, physical, relational and spiritual health. It has been refreshing these past two days to sleep so well. I sure hope that I will be able to restore what has been lost because of the sleeplessness. Its very lonely and depressing to be awake when the rest of the household is sleeping. At times it is nice to be quiet and safe but not for the most part. I miss out on time spent with D and the grandkids. I loose out on normal and natural life events. I miss out on church and walks to the park. I miss out on enjoying breakfast with D because I am too numb from being awake and not really being completely available to my family. This is not the way to be.

5) Dizziness. I have heard it called vestibular issues. Issues for sure. I am dizzy. I fall into walls. I hold onto the rail and the wall as I go downstairs. I step sideways all of the time. I look like a full-time drunk as I walk from our house to G’s house just three down and across the street. I am dizzy while sitting still. I am dizzy turning in bed. I am dizzy turning my head to talk to you. I am dizzy at standing. I describe it as if I am on a wakeboard or a timber in the middle of a raging sea. Often I list to the right more than to the left. The bruises on my right arm prove that one! The dizziness is even more noticable if I try to look beyond what I see to either side of me. You know what I mean, just past your temples. I look up or put my head back and o my goodness, I am seasick. I feel like I am falling even when the whole world is still. I do have tinnitus since the fall. I have two aweful off-key orchestras that compete 24/7 and when they take short breaks I feel as if they have turned up the volume on their speakers and I am sitting inside of an electrical grid. Try those sounds for five minutes. You’d scream. I know that the dizziness and tinnitus are related but I do not know how or why they torment me so much.

I have only shared a few of the difficulties I live with daily. I have expressed these things for two reasons. One for the personal therapeutics and two because I strongly believe that these symptoms will begin to be resolved in my journey to recovery. I am intent on accomplishing everything that God created me to do in my lifetime. I am eager to receive and give the love I have for D, our daughter and her family, our son and his family, my Mom and my extended family, my friends and those I have yet to meet. This journey is special and God-given. I do not want to miss anything more. I want to flourish and thrive and live life to the full and then more.

It’s time. I have been in the chamber for 90 minutes. The time goes quickly. I have to find some source of cool air. Its not claustrophobic in here. Its terribly stuffy. I will do my research. The decompression has begun. I need to take care of these ears. My right one is throbbing. I can pop the left but not the right. I might have to see if our grandkids have chewing gum I can try tomorrow.

I bless you and I thank you for taking this journey with me today.

Suz