Two Realizations as a Result of the Women of Faith Conference this Past Weekend

I went to the Women of Faith conference this weekend in Philly. It was awesome and amazing and sad. Sad because this is the last year they are having the conference as they have been doing it, with all the amazing speakers that have been a part of it.

It is always awesome and usually amazing. Every time I walk in there and sit down I take about 20 minutes to relax, to adjust to being there. Then I get this deep feeling inside that tells me, "Yes!! This is just what I needed!!"

[Two of my beautiful sisters and I at WOF this weekend (I'm on the right)]

I don't know why it continues to surprise me that there are still things that bowl me over about God, how his daughters share about God, and how we and life work, but it does. It often does. It doesn't happen with every speaker, but usually at least one or two will say something that just really sticks with me. Sometimes it's just a spark of an idea that a speaker shared which causes me to come through a lightning speed thought process to some form of enlightenment. This year it was the latter.

So, this year I realized two things about myself. And these two things are huge. So huge that I'm not sure why I never realized this about myself before now. Perhaps God needed me to get to the place where I am now to know how to be able to handle it. Maybe I will never know why it took this long. But, here I am.

When I was a girl I always wanted my superpower to be flying. I thought it would be the most awesome thing in the world! I dreamed about flying often. Sometimes in the daytime, but mostly at night. In my dreams I would soar anywhere and be able to feel the wind rushing by me. I loved it because I felt free and safe and happy. If any bad guys came into my dreams I just flew up and was safe away from them.

I've mentioned some of the issues I've had in previous posts (Feel free to read the back posts). Yet, I have really only scratched the surface and gone down a couple levels. Here, I'm going to share more that goes down into the core of who I have been and am now.

So, back to what I realized this weekend.

The first thing I realized this weekend is that my superpower isn't flying.

It's been a long time since I've been able have dreams at night that I can remember when I wake up (I can count the number on one hand for the same number of years), let alone have a dream of flying. But, even still...

No, my superpower isn't flying.

My super power is running way.

I am amazing at it. No, I excel at it! I can run so fast and far that no one can catch me. I leave them in the dust wondering what just happened.

Those that know me by now might be raising their eyebrows or laughing because I have always hated running. With a passion! But, I'm not talking about physically running away.

In regards to my fight or flight response, when it comes to people I love being hurt or mistreated in some way I will have an initial reaction of fight.

But in every other way, and especially when it comes to things about me, my immediate internal response is flight. Swiftly. Silently. Immediately.

It isn't always visible on the outside. On the outside I might seem fine. But inside I shut down. I run away inside. I run so far and fast into the core of myself that my heart can ache with the emptiness I'm leaving behind.

This affects every part of my life. It affects my relationships with my boys. It affects my relationship with my parents. It affects my relationship with my extended family. It affects my relationships with my friends. And it really affects my relationship with my husband (bet you thought I forgot him!).

Yes, running away is my super power.

But, if there is anything I excel at more than running away, it's hiding.

I am a champion hider. Always have been. I hide so well sometimes when my son Reilly is finding me that I have to give a couple clues before he figures out where I am. If people found me quickly it was because I wanted them to find me sooner.

When I hide inside it isn't a quick little jaunt. It can be days. It's more often weeks. Sometimes it's been months. And people never find me.

This is why I've been pretty silent this summer. I've been running and hiding inside.

You might make the correlation that if running inside affected my relationships that much, then hiding affects my relationships even more. And it does. With the only exception being that when things are good with me and Steve (which is most of the time) the place I feel the safest and best is in the arms of my husband. It's my favorite spot. If I had my way I'd never leave that spot, but life does insist on moving forward. And it wouldn't end up being good for me anyway because I would still be hiding.

That's how I have responded to much of life ever since I was a little girl. If you run away inside then it won't hurt as much. If you run away inside you won't feel as much. If you run away inside then you can pretend things are different than they really are. If you hide then no one can find you. If you hide then you are safe.

I'm not going to share all of how I learned to handle life this way and how it got to that point. Some of it is part of other stories that aren't mine to tell, and most of them would just take a long while to explain.

However, I can tell you how many times that this superpower backfired. Almost every time.

I still hurt, I just let myself bleed inside while I tried to ignore it. I still felt everything, but I fooled myself into thinking my emotions were gone or didn't matter. Things were never different than they really are and reality always crashed in. People may not have found me, but they also didn't know me and I desperately want to be known and accepted for me. And any illusion of safety I had was a lie.

They were ALL lies.

But the thing with lies is that they are sneaky. They often start little but gradually grow into something big.

I've been trying to be really honest with myself and others for the past 13 or so years ever since I realized how hurtful lies could be (another long story). I have thought I've been doing pretty well at it. So, you can imagine my shock and surprise at realizing that I've been telling myself big huge fat lies for most of my life and didn't recognize it!

So, the first thing I realized this weekend was that my super power isn't what I'd hoped it was, and I've been telling myself big fat lies for years.

The other thing I realized this weekend is that I've pretty much just been waiting for life to happen.

I have Fibromyalgia and chronic fatigue. I have pain and achyness all the time (though better more recently which I'll share in another post soon). I have difficulty with normal every day things that other people hardly blink an eye at.

I am an introvert. On a scale of extroversion and introversion, with extroversion being 0 and the most introverted person ever being 10, I'm around 8.5. I might even be able to argue for 9.

I have a really active extroverted 5 and a half year old boy and a mellow but curious 6 month old boy. Most of the little energy I have is drained out of me just with taking care of them. I'm exhausted every second of the day in a deep-down-I'm-never-going-to-not-be-tired kind of way.

Since I can do little else, especially not do much of any work to earn money, I feel like I am just in a holding pattern of waiting.

I'm waiting to feel better. I'm waiting for my boys to grow older. I'm waiting to figure out more of what I want to do with my life. I'm waiting to be in a good mental space. I'm waiting to be in a good relational place. I'm just waiting and waiting and waiting.

I decided this weekend that I'm done with waiting.
I decided this weekend that I don't want to run away anymore.
I decided this weekend that I don't want to hide anymore.

I'm still trying to figure out the how. It might take a while.
Maybe I can get a new superpower some day.

Maybe some day I can fly.

My Fibro Story

Since Fibromyalgia doesn't have a known cause, it's hard to say where my Fibro story started. However, there was a time I definitely knew something was wrong...

When I was 22, very close to celebrating 23, and away at college I woke up one day and realized I felt like I had never slept at all. I was exhausted. I dragged all through my classes and activities that day until I finally was able to sleep and get rest. Except I woke up the next day again feeling like I hadn't gotten any sleep.

Soon I was falling asleep in class, feeling awful, and struggling to focus on homework and assignments, even to comprehend what I was reading in my textbooks. [That fatigue and fogginess in thinking and concentrating has continued. Some times are worse than others]

After a week of this I knew something was wrong. No amount of sleep changed how I felt. I finally went to the doctors and they took a number of tests. At the end they told me I was perfectly healthy and nothing was wrong. Have you ever wanted to throw a total tantrum but as an adult? So wanted to here! I still felt awful so I knew something was wrong!

There is nothing worse than waking up one day feeling awful and, as time goes on, realizing that your body has betrayed you. If you have never experienced this for some kind of debilitating condition, illness, or disease it is difficult to convey the horror, confusion, and grief this makes you feel.

A few years went by while I met my husband and got married (one of the best decisions of my life!), I started my masters in counseling (also one of the best!), and still- no matter how much sleep I got I felt exhausted. Eventually, after reading online, I figured that I had chronic fatigue. I had a lot of the same symptoms. I still went for tests every so often as things seemed to get worse. The tests still came back saying I was perfectly healthy.

At this point my husband tentatively suggested that perhaps since the tests said nothing was wrong then maybe nothing was wrong? I responded with exploding, responding that I felt awful and it was in no way normal to feel this way. He learned to keep those kind of thoughts to himself. :) I learned to not respond badly when someone asks a logical question, even if it's upsetting.

I worked at an independent bookstore for several years around this time.

 
I learned that one of my co-workers had Fibromyalgia. She would occasionally call out sick the morning of work, need help lifting the boxes, and other little things like that. I remember thinking a little ungraciously the third time in a row I was working and she called out sick, then finding out later that she had been gardening (one of her favorite hobbies) or something a little more physically strenuous.

If I could talk to her now I would tell her, "I soooo get it now! I am so sorry I ever thought anything ungraciously and wish I could have thought to make it easier for you." Because it is hard. It is hard to get out of bed, and hard to resist doing something you love, even knowing you might pay for it later in pain and stiffness.

A couple years later (and a lot of difficult nights and foggy days) we decided we wanted to have kids and I gave birth to our son.

[Actual picture of our newborn son- Reilly Christopher]

Now, my son is wonderful! But the process of birth and recovering afterwards was awful. I was completely wiped out physically from the pain. I was drained mentally and emotionally from fatigue. I developed Post Partum Depression, which kept me in a constant state of stress and emotional distress. Reilly's whole first year is probably the worse year of my life so far because of all this. Reilly himself is the best part of that year!

If you've read my post about what Fibro is, you will have noted that one of the risk factors is physical trauma. I believe that the pain of giving birth ramped everything up. I started having pains in my hands and feet. My arms and legs would tingle periodically in a way that itched and drove me crazy. I had a hard time even walking because it was painful. My hips began giving me trouble. It felt like I was developing Rheumatoid Arthritis in all the major joints and all those in my hands and feet.

 As this year went on, I began feeling trapped in my body and wanted desperately to either have my body work properly and let me feel right, or to not be in my body anymore. Please understand, it isn't that I wanted to die. I was not suicidal. I just didn't want to be in my body anymore because I was so tired (having a newborn didn't help with that!) and so tired of hurting and not knowing why.

After a couple months I was able to go to an RA doctor, and received the orders for another series of tests. However, this time I got a diagnosis back- Fibromyalgia. Finally, after 7 years, I had gotten a doctor that both had the knowledge and took the time to really listen and figure out what was wrong!

It was both relieving and depressing. Relieving because I finally had a definite diagnoses in which everything I was going through made sense! Depressing because I already knew that Fibro was a lifelong condition and there was no cure for how I was feeling- I hadn't wanted that reality.

It took a while to completely come to terms with having Fibromyalgia and how different my life would be with it. More of that in this post.

What Is Fibromyalgia?

Fibromyalgia (Fibro) is a chronic syndrome, with no definite cause, in which the sufferer experiences heightened pain and stiffness, fatigue, and depression, among other symptoms.

Lets break this down...

Fibromyalgia is a chronic...
Fibro is a condition that doesn't go away. It can get better at times, it can get worse, but once a person develops Fibromyalgia they have it for the rest of their life.

...syndrome...
Fibro is called a syndrome because over the years doctors have noticed certain symptoms grouped together in patients they have seen. Over time this grouping of symptoms became labeled as Fibromyalgia. It is not a disease, an illness, or directly caused by a virus.

...with no definite cause...
There is still no definitive cause for Fibromyalgia. There are things that are the same for some, but no underlying reason is the same for everyone. Here's what they know about the cause in a condensed form:

1. Fibro often runs in families, so genetics could predispose a person to get Fibromyalgia.

2. Epstein Barr virus, hepatitis C and other systemic infections have been linked with Fibro. Chronic infections of certain viruses can trigger Fibromyalgia.
3.  There is some evidence that links Fibro with previous physical and emotional trauma, similar to PTSD. This can include a bad car accident, childbirth, or menopause (a dear woman I love told me her symptoms have been greatly exacerbated by menopause).
4. Fibro has been linked to diseases and illnesses such as Lyme disease, ankylosing spondylitis (an inflammitory disease that causes vertebrae in your spine to fuse together), rheumatoid arthritis, and lupus (an inflammatory disease caused when the immune system attacks its own tissues), all of which indicates there is an autoimmune element to Fibromyalgia.
5. Some believe that a pattern of sleep dysfunction is the root cause for Fibro.
6. Studies have shown that those with Fibro have lower Serotonin (Serotonin helps lower and regulate pain) and 2-3 times higher levels of substance P (increases nerve sensitivity and heightens perception of pain.)

My opinion is that 1-4 are risk factors. The more of them you have the more likely you are to get Fibro at some point, with 5 & 6 having potential as both cause and symptom, perhaps cycling to make Fibro worse as time goes on if nothing mitigates these conditions.

...in which the sufferer experiences heightened pain and stiffness...
After reading the previous paragraph in #6, it isn't a wonder that pain is experienced. Additionally, to get an official diagnoses of Fibro, pain must be present in at least 11 of 18 pain points on the body, and in each quadrant of the body. The pain feels similar at times to Rheumatoid Arthritis, but instead of occurring in the joints, the Fibro pain occurs in the muscles, tendons, and connective tissues. Stiffness in these areas also occurs after remaining in one position for a time, causing additional pain.

...fatigue...
Regardless of whether it is cause or effect or both, sleep patterns play a big part in how people experience Fibromyalgia. Fatigue experienced ranges between mild and overwhelming. Fatigue often contributes to depression and worsens pain symptoms. People with fibromyalgia often have below-normal levels of certain brain chemicals that are essential for proper sleep patterns and a sense of mental well-being: Serotonin, Norepinephrine, and Dopamine.

...and depression...
Depression often occurs in those with Fibro as a result of lowered Serotonin levels in conjunction with interrupted sleep patterns and increased fatigue. Low cortisol levels, poor mitochondrial function, low levels of vitamin D, and hypothyroidism can also contribute to anxiety and depression.

...among other symptoms.
Other symptoms include tension headaches/migraines, Irritable Bowel Syndrome (IBS), TMJ pain, dry irritated eyes, ringing in ears, pelvic pain, skin problems/sensitivities, burning, tingling or numbness in hands and feet, and cognitive difficulties (memory problems, confusion, and difficulty concentrating).

And all of this means that Fibromyalgia is complex, confusing, and difficult to deal with!

Do you feel a little down just reading this? It's not an easy condition to live with, and difficult to not feel slightly depressed when thinking about it! Not everyone has every symptom. However, the fatigue and the pain points are the definitive symptoms of Fibro. You have to have those to receive a diagnoses. I haven't had every symptom of Fibro, but in writing all of these symptoms out I realized that I now do, and some have become pretty bad!

I will share more details about each of these sections, as well as some of the ways I've found to manage it and think about it more positively, in later posts.

Do you know someone with Fibromyalgia, or have you been diagnosed yourself? I'd love to hear more about it!

Disclaimer: Not a doctor!