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.

Yesterday I realized as you sat and shook

That life is no fairytale read from a book

Your eyes unfocused. Your face a flush,

The surge of worry- an adrenaline rush.

Heart is poinding as I stare at the door, 

Helplessly wondering if I would see you anymore.

I held your hand and layed my head on the rail- all I could do was cry and pray,

At this moment, I’d trade any amount in the world if only God would let you stay.

Results are in and you’re ok, 

Seems the stress in our world finally gave way.

The floods rushed in and time felt faint,

I looked at you as Christians look to a saint.

You’ve been here for me, quiet and steady in your time,

I didn’t realize the turmoil hidden behind your eyes.

I replayed our memories in my head,

And replayed every word that you’ve ever said,

And my God my God how I’m glad that your not dead.

It reminds me that this is a beginning and certainly not the end. 

Perspective comes in waves-crashing upon our shores.

Chances come in fleeting winds and pass upon unopened doors.

Cherish and be greatful for the things that you often neglect, like a smile or some sign of respect.

Love who you are but never fear the change,

If you wait too long, your life falls out of range.

As long as we’re here, we’re together in this,

And until the day I die, there is not a moment- a second that I would miss.

What’s going to be my purpose,

When the current purpose ends?

When my position now cloacked in the obsolete fades as mist.

When the sun sets on that day and I become the new person embarking on a new day. A new chance to be someone different. 

I’m exhausted and I’m tattered and held together by rusty staples. 

Every movement sounds like a bag of stones clacking against eachother. The sound in the silence is deafening.

When I awake in the dew, who will I be then?

Will I be noble or strong?

Will I be wiser or scorned and fearful?

Or will I be flames that rise,

Or tides that consume. Consume in this life what I could not do in the past. Soak up everymoment and own it in its totality. My world may be small, but the universe is bright.