As I lay on the couch covered in ounces of beaded sweat for the fifth time in a weeks time, I knew what was happening. The great, almighty Dysautinomia flare up during the summer (of course)! It feels like you're freezing and then on fire and your body responds in kind. The same body that continues to betray you.
I've tried screaming at it, "You have ONE job"! But silence is my only reply. I arrive at work. Tired. Haggard. Trash panda strikes again (much less entertaining than Kung Fu Panda)!
I feel like staying in bed. I feel like I should rest, but the world awaits. I have to work. It's part of my duty as a wife and as a mother, even if they would rather my doing something else that benefits my health more. I'm scared that if I am not a participant in this world, I will loose my membership card. My muscles will atrophy and I will die and unfulfilled life.
So I work, and I create. I love art. I love sketching and writing, painting and photography (even though I pay for each activity through my body. Each action has a negative reaction in kind.
So what do I do with this information? With this life and all of its complications?
I could choose to do nothing. I could choose to do everything. I could choose to 'fake it' till' I make it. So what is the balance? I had to find meaning myself. Through art. Through faith. Through my spirit. It may seem untrue but your spirit is what holds you. Strength in the body is temporary, but strength of spirit and of the mind can carry you through almost anything. Almost. Sometimes you will get beaten down. You will hit the pavement and it will burn your skin, but every time you choose to fight back, is another day that you own your illness and it doesn't own you. Sounds like fluffy crap doesn't it? I've found it to be so true. If I can keep my mind busy, if I can find just one thing that I enjoy, that will bring me life. There was an interview on the documentary "Unrest" that I watched recently where one patient with Chronic Fatigue Syndrome decided that she could go anywhere in her mind. So what do you do when you just can't? Ride out the storm? Cry? Scream? Sleep? The answer is in front of us. Yes. You do what you need to, to ride out the crashing waves. Never be ashamed to cry or scream or rest if you need to.
If all you can do is open your eyes, remember somewhere that this is a great feat. You're here.
Not too long ago, I was desperately ill. I spent six months not being able to consume solids. My adrenals were fatigued and my gallbladder was failing. None of which I knew. I didn't know that I could've died from an Addisonian Crisis. Every day, I found something to watch or listen to. I found music and video games. Some days I just slept all day or stared out of an open window and day dreamed. Some days I only had enough energy to let the tears stream down my face. What I didn't see until some time later was that those were small victories. I was alive. I was fighting. Even if I didn't feel like I was doing anything at all. Sounds like crap doesn't it? Wait until you live it if you are not living it already. This is what outsiders don't seem to grasp. We are doing something. We are fighting for our lives. Every day we are here. And some days it will be beyond their comprehension. They (the outsiders) can't fathom how one day you are well and another day you are lying on the ground curled up in pain. They see you walking and then they see you falling. They see braces and wheelchairs and medication, and then they see that one photo of you eating ice cream with a friend or family member and the assumptions begin and are never-ending. They don't realize that one photo took you a month to achieve. That you've been staring at the blank walls of a hospital, or out of your bedroom window wishing that your flare would pass so that you can step foot outside. Here's the thing that no one wants to say, that isn't going to change. So what do we do then, us chronic illness warriors. Keep on keeping on. Keep on waking up and keep on breathing and keep eating that ice cream when we can and take all of the pictures we want because in the end it is our life, and it is worth living.

The only peace is on the page.

Where it all makes sense to me.

Where I find my soul. Is on the page.

I’m blending away every mistake,

And it’s form is taking shape.

She’s stronger than me, her eyes glow in the dark.

Her skin dark and smooth.

She carries the confidence needed to walk through.

To make it through.

She has seen her share of war,

But she’s not lost a battle within herself.

I envy her and I hate myself for not being more like her.

She lies deep within underneath all of the doubt and fear.

If I put her on this page, will she rise up in me?

Chronic Fatigue/EDS and what you can do.

 

Some days are worse than others. Some days it is a trial just to get out of bed in the morning, but still I manage to roll out and attempt my day. Through these days, I load up on B vitamins and caffeine, and most days it still isn’t enough. I’ve tried exercise to see if I can raise my endurance and some days, it still isn’t enough. I sit at work, stare at the clock, and long for my comfortable bed. It’s almost too painful to be awake. Most physicians and people do not understand this. Especially when they see us out in the world and there doesn’t appear to be anything wrong. Just a hint of a facial expression that just barely lets people know that something may be wrong. Doctors seem to go to what is easiest in many cases. They try to adjust your vitamins or diet right before they accuse you of ‘faking it’ or exacerbating your symptoms. That is unless you have found a compassionate practitioner which as unbelievable as it sounds, I’ve managed to assemble a very compassionate medical team (it took many years of trial and error and research). 

So how do you make yourself be heard? 

1. Preparation!

Make sure you have your medical records along with any personal research you’ve done and bring the in the information you’ve collected (testing, symptoms, etc.). 

2. Help the physician connect the dots!

You want to have made these connections prior to your appointment. What do you know about the condition that you want your physician to research? What connections have you made (i.e. joint dislocations in connection with Ehlers Danlos Syndrome or symptoms of Chronic Fatigue such as loss of memory, excessive exhaustion after physical or mental stressors or events/activities).

If you find that your doctor is unresponsive to your needs, then you will need to likely go for a second opinion. A good medical team listens and responds. After all it’s your insurance and funds that support the profession so in essence they work for their patients. Ensure that you are a good patient as well. Always remain professional no matter what the irritant. 

Remember that YOU are your BEST advocate! 

3. Don’t give up!

This journey may be exhausting, but you are deserving of answers and treatments. People or physicians may make you feel detached or burdensome. IGNORE THAT! Find your strength that is buried deep down under the rubble and pull it out of your reserves. Find things that encourage you like music or art. Anything that keeps your mind active and sharp, and never forget that you are stronger than you know. You have come this far, even if you are scraped, bruised and bleeding. You are here. Right now, in this moment, and so long as your living there is opportunity to move forward.

So, how can you cope with EDS and Chronic Fatigue Syndrome? 

1. Give yourself some credit! Did you wake up? Did you do what you could within your limitations? Then you are doing all that you can and that is all anyone can do.
2. Ensure that you listen to your body. If you need to rest….REST. Take a load off and listen to the signals your body is telling you. If you choose to ignore the signs, then you will likely suffer the consequences. 
3. Find things to occupy your mind! Whether it is reading, or art, or even meditation if you can do nothing else that day. Or if all you can do is sleep, allow your body the time to do that.
4. Ensure that you are taking vitamin supplements or medications if suggested by your physician. Remember that you cannot hope to be better if you don’t follow the suggested treatment plan. What if the treatment isn’t working? Ensure that you keep a journal of your progress and then present it to your physician for review. Remember that medications may need to be changed or dosages need to be adjusted to begin to see any benefit.
5. Find ways to hold on to hope! Whether it is your belief in yourself, and/or the presence of good friends or family. Maybe it is your faith in a higher power, and maybe it would just be faith that modern medicine will catch up to help you. Hope is essential to staying afloat on this journey.
6. Take one day at a time! Every day is a new opportunity. You only loose out, if you stop trying.

In closing, we all have a different and unique journey that we are on, and sometimes you feel and are helpless against the circumstance. Sometimes people and physicians just don’t get it. Because who can really understand your journey better than you? Sometimes it is up to us to lend that information to those around us, and to spread awareness so that someday there is more understanding and compassion in the world around us. Never let go, and never give up.

 

 

 

"This is the greatest show"-The Greatest Showman

Impossible. Improbable. Unrealistic. Wondrous.


As I sit here, I think of life as it is now.
My lungs filling with air as my chest rises and falls. Filled with life and appreciation for life.
Gratitude.
I have so much gratitude for my family and for those that love me enough to be here through the hardest time in my life.
The veil is pulled back and I can see the road ahead and for the first time I'm excited. I have a vision of my life that was previously clouded. Now what was once unknown and improbable, seems more than possible.
It seems like opportunity.
It seems like a wondrous journey and as I take my first steps into this new life, my eyes are taking in everything surrounding me.
With a smile, I move forward knowing that the future, though uncertain, has the opportunity to be whatever I need it to be.

When people think you’re ‘all better’ because they see the corners of your mouth upturned,

When they think that nice sweater is an indicator of your health,

When they think that if you laugh that a miracle has become you or that they’ve caught you,

Know this one thing....

Life will out.

During pain and suffering, life will out.

During times of judgement, life...will...out.

As long as your heart is pounding in your chest and you can feel the air in your lungs, life...will...out. 

Whether they like it or not, you are here.

You are breathing.

You are living.

Make it spectacular.

Sometimes I wonder if I will live to be elder

As I lay awake in my comfort shelter.

Sometimes I wonder if I am enough,

To get through this complicated stuff.

At times I feel doubt as life slips through my fingers,

I hang to the moment as it lingers.

I try to sing and try to feel joy,

But life plays on like a childrens’ toy.

I stare at you as a child with wonder,

And I ponder if I will drag you asunder.

I sing and I pray and I cry and I carry on,

Wondering if we are singing the same song.

The one where we feel each others embrace, and times 

When I could read every look upon your face. 

Your breath moves your chest and I wonder what’s inside,

What’s going on, and is it too late to try.

But the truth is it’s never to late-

To hang on to what you love and embrace your fate.

Your eyes whisper queitly in the dark,

Of a world that I crave to be a part.

But you love me. My insanity. My mind.

Your eyes look upon me so soft and so kind.

You’re quiet but your loud with your care.

There isn’t a moment where I wonder if you’ll be there.

You fight for me when I am too weak.

When I am at my lowest you carry me to the peak.

You do so without return. Without asking and with so much concern.

You shelter me in your love and you push me to be stronger.

If it wasn’t for you I wouldn’t be here any longer.

You hold me up when I’m to weak to speak- to utter another phrase, you love me in spite of these harder days.

Even when I walk the hardest path, you save me everyday from the worlds wrath.

What you need to see as I do now 

Is your more than enough even if you don’t know how.

You make me feel safe in a world out for itself,

And you never make me feel lower on your shelf.

You do so fearlessly and with love in your heart,

You never run from the fight, and you’ve done that from the start. 

You’ll be here til the end and I realize that now,

We will make it through though we are not sure quite how. Hands held tightly, breathe in and out,

This is love- what it’s all about.

It’s not the toothpaste or toilett papar roll,

It’s more than your typical mold. 

You are my life and my choice and I will never look back,

You’re in my head, my body, and in my stack.

You’re here even though you have a choice to walk away.

That means more than words can say.

If I could have you a second time I’d do everything the same- just to have the last words on my lips as your name.

You hold me tight and I cry in fright. 

You tell me it’s ok and I believe you anyway.

You’ve made this life one I never want to leave. I need nothing else- I need no repreive. You’re here and I see everyday you are with me.

If all else fails beyond our bodies in ill repair- just know I’m still me and I’m always right there.