The Chronic Illness Files


Hello. For those who don’t know, I have a long list of health problems and because of my real life experiences, I felt compelled to start this series of blog posts about the issues I (and unfortunately so many others) face as we live with a Chronic Illness. 

Incase you are curious about my list of issues, here are some highlights: Dysautonomia/ POTS: Postural Orthostatic Tachycardia Syndrome, Hypokalemic Periodic Paralysis,  Inoperable Bilateral Madelungs Deformity, Meniere’s Disease, Asthma, Migraines, Anxiety and Depression. Now that you know a bit about me, here is my latest addition to The Chronic Illness Files.


I once had a dream…

I was swimming in the ocean when all of the sudden it was night. There was a thick fog and I could not see the moon nor the stars. I could not see much of anything. A wave hit me and when I swam back above the water I no longer knew which direction I needed to swim to reach the shore. I knew I was close to the shore, but I couldn’t see anything.

Then, I heard people yelling for me from the shoreline. Maybe it was from the shoreline? I couldn’t tell. As the sound of their voices traveled across the water it echoed and I could still not tell which way I needed to swim. The people on shore realized my struggle and began to toss things to me to try and help.

Someone had a flare and threw it out to me, but when I swam to it, the flare was too wet to light.

Next, someone turned on a flashlight and threw it out to me. I could see the light as it flew through the air, but when it hit the water it sank before I could reach it and soon it was dark again.

I was cold and I had been swimming for so long that I was struggling to keep my head above the water.

They tried to throw me a life preserver, but no one could throw it out far enough to reach me and the waves just continued to bring it back to shore as they tried again and again.

Someone threw a pair of goggles into the water, and even though they were sent with good intentions, goggles were not going to help me see through the dark fog.

Neither were the floating flip flops, sinking scuba tank, or soon to be wet towel.

The people just kept trying to toss things to help and continued to reassure me that I would be saved, but because nothing was working I was losing hope.

By this time the water was becoming colder and my body was shaking. It was so dark that I could not see my own shriveled hands. The people could only offer their words of encouragement and hope, but words could not help keep my head above the water.

Soon my weak body could no longer swim and I slowly sank below the cold water.

I woke up at that point and realized how similar my life is to this nightmare. For so many people living with a chronic illness, there is no cure. You may go to one doctor after the next looking for help, and as they throw a bunch of medications at you, that may or may not work, all you can do in the mean time is try not to allow your symptoms to overcome you.

It is a long and hard battle living with chronic illness. I have spent so much of my life living in the dark when it comes to my own body that it fills me with anxiety. What will today hold? Will I faint in public again? Will I get another concussion? What horrible side effects does this new medication have? Is this worth it? Will I ever get better? Will there one day be a cure? Will it get worse? Will I always need this wheelchair? Will I ever be able to work? Will I be able to have a child? Will I ever allow my emotional walls down long enough to find love? Am I a burden? Will I be a burden?

With all of those relentless questions flooding my mind, it can be easy to feel like giving up. It is dark and lonely and tiresome and frustrating and there are no real answers and some days the physical and emotional trauma of chronic illness takes everything out if you. You can feel as though you are treading water.

Maybe it would be easier just to sink below the water. Everyone knows you can’t swim forever. What you can try to do, as you battle chronic illness, is try to keep your head above the water long enough to see the morning sun. Maybe that fog will lift; maybe the sun will shine warm and bright again; maybe you will reach the shoreline one day and never struggle again, but you will never know unless you push through the hard times.

Just keep your head above the water and if you need to reach out to someone do it.

Maybe they’ll have a boat.

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