Revelation

This morning I woke. I did not want to transition to daylight hours. I felt overwhelmed.

 I realized that I was opening myself up in a way that I never have before.

This journey is more than I thought it would be. I feel like I may suffocate. He will see ME. The parts of me I have always hidden. The parts of me I have just started to share here.

What will happen if I let someone see the me that I have kept hidden for all of my adult life?

I feel the fear. The fear I haven't felt since, as a young child, I discovered to never truly trust anyone. The fear that taught me to always keep myself at a distance, even without letting no one know that this is what I was doing. The fear that enabled others to describe me as "an inspiration", "passionate" and having a "depth of emotion" even when I knew that I was deceiving them in many ways.

This journey will mean that he will see how broken, shattered, and lost that I am. He will see the demons I wage war with. He will see beyond the facade I have presented to the world since childhood.

Will he love me once he sees that I am not strong as he was led to believe?

Somehow, I think he always knew.

Yet, that's not possible, is it? No one has ever known. I am a master at keeping the "real me" hidden and locked away. It's locked so deep inside of me that often I do not know who that person is any longer.

Can I, after 30 years, start to open those doors?

Can I, after 30 years, believe that someone may actually love the broken, dejected, abused and shattered soul that I carry within me?

Can I, after 30 years, actually trust someone?

I do not know.

I am terrified.

I have had panic attacks throughout the day.

Panic attacks I have not had since childhood.

The feeling that the bad people are coming. That they are watching. That dreaded sense I had as a young child that resulted in my never sleeping, staying clothed beyond all belief, and wrapping myself completely in blankets when in bed.

I panicked. I did NOT want to be in charge. I did NOT want to make decisions.

I was lost in fear.

Frantic.

Yet, even when I begged him to take control, he did not argue. Yet, as I started to write, I realized..... he never really took control. He left me in control, and though our conversation changed (such as him stating that today would be a good day to do x,y,z), he still had allowed me to be in complete control.

I am a mastermind at the opposite.....allowing the men in my life to think they have control when in actual reality I controlled every aspect of life.

Yet, never did I realize the opposite existed. He managed to give me the breather I needed, all while I never lost control.

Confusing it is.

Yet, so comforting.

With that realization, I called him in.

I apologized for neglecting my responsibilities. I promised I would not do so again.

He smiled, knowing that I was OK again.

Somehow, it is OK.

This is going to be a tough journey. We're both going to have to be in a constant state of learning and change.

Whereas I thought he would struggle and find the anxiety and fear of the dynamics to much to happen, it appears that I am the one with the greatest struggle.

I thought he was so much more adept at hiding his emotions and keeping them buried beneath walls. There is one fundamental difference though.

He was only hiding his emotions and thoughts from others.

I have been hiding my emotions and thoughts from myself since childhood.

The Real Me....

Something you, the reader, doesn't know about me.

In real life, I am confident, purposeful, passionate. There is not a single person that knows me that would describe me otherwise. Everyone will speak of how intelligent I am. That I"m a real "go getter". They'll tell you that nothing stops me and that I'm an "inspiration" (I always gag and feel sick when someone raves to me about what an inspiration I am to them).

You are all seeing the side of me that I HAVE NEVER REVEALED.

That part of me that feels ......

alone
  scared
    out of control
      weak
        tired
         bone weary
           incapable
             small
               hopeless
           

Yes, you are seeing that part of me that no one else knows.

Chronic Pain and Hiking

During the winter months, Fibro has this way of making you feel incomplete, like half a person. So much that you enjoy is taken away from you during the colder months that you jump at any opportunity to get that missing part of you back. Of course, that impulsiveness often has consequences that make you question whether it was worth it or not. This past Sunday was one of those times.

The weather here had been freezing cold for a few weeks. Much colder then our usual winters. I was bound in my home, wrapped up and praying for heat. Then, suddenly, our daytime temps went from in the 30s to high 50s!

This past Sunday, we got up to head to church. It was damp and a little rainy outside and a bit cool. Yet, after service, when we walked out it was warm and sunny! It felt wonderful and for the first time in several weeks I was able to take off my gloves!

There is a place I know of that offers level walking trails. They wind through the woods and alongside the river. The area promises sights of wildlife and beautiful views. Although my walking recently has been intermittent with wheelchair use, the weather was warm, the sun was shining and I was sick of being cooped up inside all winter! So, after a quick lunch, our family took off.

The walk started out fairly well. A couple places along the paths were flooded, but we could navigate fairly well around the spots. Our youngest decided to splash straight thru managing to soak himself from the knees down. Still, the temperature was warm enough that it wouldn’t harm him to be wet just for a bit. Planning to take the kids to the farthest point of the trail, and then take the short way back we excitedly begin our journey. A bit into the trail, it began to drizzle rain. It wasn’t enough to worry about and the children didn’t seem to notice.

Our daughter, who we suspect has fibro also, began to have pains in her legs. I was in a lot of pain myself so she and I lagged a bit behind the guys. We took breaks often and babied our sore beaten bodies. Yet, we were both so happy to be outside in warm weather and not cooped up at home.

We reached the point of the trail and was thrilled with the glorious view. Seagulls flock inland to the area we live in during the winter and the water looked white with them floating on it! 

The sun was peeking out of the clouds now and then and we enjoyed combing the riverbank looking for goodies.

Yet, what we discovered wasn’t quite so good. The banks of the river were filled with garbage and trash. We found softballs, tires, bottles, toys, trash, an old swingset…all kinds of things. 

It was so discouraging to see this beautiful creation distorted by the amount of garbage people had tossed into the river.

As the children and I were brainstorming different ways we could clean up the mess, our daughter's IBS (Irritable Bowel Syndrome) flared. She had to use the bathroom and we were at the farthest end of the trail from the bathroom! By this point in time, my monster had reared its ugly head and I knew I’d have to make the return trip slow and steady. Yet, my children are avid hikers and so we sent the two of them together along the trail back to the bathroom. In my fibro fog, I told the children at each trailhead to go right. We followed behind them.

At this point in time, the temperature rapidly began to drop. With the youngest being soaked, I took off his boots, socks and pants and put my sweatshirt on him upside down. In this way, the sleeves covered his legs and feet to warm him. My husband planned to carry him out.

But then we heard screams from the other two children. It sounded like they were saying something but we couldn’t hear what. Then the yells stopped. Worried that something may have happened, I sent my husband racing down the trail to the children (who were only a few minutes ahead of us). I waited a bit but when he didn’t return and I didn’t hear anything from him, I begin to worry. I put our youngest on my back, and fueled by fear and adrenaline began the hike back. To my horror, I realized I had not sent my children back the way we had come but instead the way that was completely flooded! There was no way I could get around the floods, much less the children.

By this point in time I’m really worried. I haven’t heard anything from my husband or older two kids. I HAVE to push on. Although I tried to walk around the deepest parts of the floods, fibro prevented me from being able to keep my balance. Scared that I would fall with my son, I ended up trudging right through the deep parts of the water.

I pushed and pushed and pushed. If something was wrong with my older two children, they would need me. Besides, the sun was setting and the gates would be closed and locked soon. There wasn’t going to be time for my husband to come back in on the trails and get our son and me out.

My body wouldn’t go anymore. I couldn’t feel my legs or feet and my hips were causing agonizing pain. I had no balance, and was shaky from the pain. I was scared. If something were wrong with the older two, I was of no use to them now! I couldn’t even get my youngest off the trail and back to our car. I prayed to God, asking him to please let me keep going. To please let me get back to the car and the other children.  I was crawling by this time, or so I thought. Let me explain.

I remember kneeling down and slowly crawling towards my destination. Yet, I suddenly realized that my knees and hands weren’t getting wet! I took a few deep breathes and saw that I was still standing! I didn’t feel like I was walking. I didn’t have the strength left for that. Yet, I had been!! . What had just happened wasn’t physically possible. I couldn’t walk another step.

I had stopped and was bending over with my hands on my knees. My youngest had fallen asleep on my back. His arms and legs hung straight down on either side of me. I couldn’t move and the pain was unbearable. I begin to softly cry. As I did, I heard the sweet voice of my youngest say, “Mommy, please don’t cry.”  I put one foot in front of the other and as I rounded the curve I had been standing in, I saw a tree stump with the sun shining down on it, despite all else being overcast. It was huge and was cut to the perfect height. I could easily sit down on it, not having to bend down or anything. It was big enough that my son could stand and walk around to get to my lap. I sat down thankful for a place to sit and wait. I sat looking at the trail in front of me, knowing that I couldn’t go another step and wondering how long it would be before help arrived.

I prayed that all was well and that help would come soon. As soon as I finished praying, I heard footsteps coming thru the woods behind me! Not from the trail, but thru the woods! I called out and it was my husband. He assured me the other children were fine. Upon realizing I had sent them back the wrong way, they had yelled to us to let us know that they were going back the way we had come (the short way). Then they had taken off and not heard our calls back. They had made it to the bathroom and were hanging out with the caretaker (whom they knew from previous visits). Yet, I was confused. How could my husband be thru the woods behind me? Had I taken a wrong turn in my fibro fog and pain? I told him to stay where he was and to keep talking. I could tell he was near to me and didn’t know exactly where I was anymore (though prior to hearing him had been confident to my whereabouts). I took just a few steps into the woods and was able to see him where he stood on the trail. He came down and got our son and I leaned against a tree to recoup. He helped me back to the trail and told me that if I just waited, he’d be able to come back and get me to. 

Only a short distance and both my older two children came running to assist me. Upon finding the trail map, I discovered that had I tried to push on instead of stopping whenI saw the tree stump, it would have taken much longer for me to get back to the vehicle. The trail wound back and forth before even getting toward the parking lot! Yet, by stopping when I did, my husband was able to find me quickly and get me back to the vehicle.

Upon arriving home, I was helped into my bed. After helping me get unclothed, warm dry clothing was put on me and blankets were piled on top. My children came and kept me company, filling me in on the events I had missed. We discussed how we had not thought to use the same rules we use when hiking, as we each had merely thought of this particular walking trail as nothing like our usual summer hikes. From now on, all walks will be considered hikes with the appropriate rules covered in a refresher course! 

That night I woke in severe pain. Three Lidocaine pain patches ended up lessening the pain in my hips just enough so that I was able to doze in a light sleep. The next morning I was confined, unable to move. The pain was unbelievable. Normally I would have beat myself up, knowing that once again I had made an impulsive decision and was stuck in bed as a result. Yet, all I could think about was how everything had worked out. Everything had happened, at just the right time, so that I was able to hear my husband walking back up the trail and cut of a huge chunk of distance and time. Sure, I’d made an impulse decision. It ended up with my being bedridden. Yet, sometimes the pain is worth it. 

Many of us with Fibro beat ourselves up daily. We beat ourselves up for not realizing we were out of spoons and using spoons from tomorrow. (The Spoon Theory). We beat ourselves up for not realizing that cooking that meal yesterday meant we couldn’t clean the kitchen today. We beat ourselves up for not accepting our own limitations, and for not realizing our potential. Fibro comes on so fast and strong, crippling the body and playing havoc on the mind. We feel so hopeless at times. If each day we knew what to expect, we each feel we could handle it better. Yet, what we can do today, we won’t be able to do tomorrow. It’s never the same. There is neither rhyme nor reason to Fibro.

It is so important, that when battling Fibro, we quit striving for the same perfectionism we had prior to our health problems. We were never going to reach the perfection we demanded of ourselves anyway. In some ways, that unrealistic drive was probably what caused our bodies to short circuit in the first place.

It’s time for Fibromites to quit looking at what was and start looking at who we really are. We are not defined by what we can or cannot do!