Published: 23/01/2024 Tags: Stories

My chronically ill reality with EDS

People don’t know that I had dreams, I had dreams of being successful and being full of energy for my children. I had dreams of getting up in the morning and feeling rested instead of excruciating pain, able to make it out of bed or through the night without pain.

I had dreams of dancing around the house in dresses with my girls to our favorite songs while cooking dinner for my family without pain, and dressing up every day in my favorite outfits because that’s how I love to express myself. It’s fun for me and who I actually am or would be with out the pain. Now my pretty clothes sit in my closet collecting dust and I have to debate on getting rid of them or put them away in storage boxes.

I had dreams of being in the fashion industry or fashion photography, I even got accepted into a school in New York City for fashion photography and had to put that on hold. I had dreams of not going to the doctor every week and instead, hanging out with family and friends.

I had dreams of being able to go on a roller coaster with my kids and jump up and down on trampolines or run around and chase them. I had dreams of playing with my daughters or doing their hair without being in excruciating pain; I still do things with and for them, just in severe pain.

I had dreams of seeing the world without fog, and I had dreams of living life where I actually feel alive. I have dreams still but they’re a little different now, and more like dreams of being able to live long enough to watch my kids grow and be there for them for as long as I can.

People don’t see the weekly doctor appointments and laundry list of diagnoses. People can’t see how desperately I need sleep every day even though I will never feel rested because of the pain that only allows me a few hours of sleep a night, and the everyday fatigue that feels like a horrible hangover that doesn’t go away.

But I get up every day and try to make the best of it. I try hard every day to accomplish something even if that just means something small or just to survive the day. I look at old pictures of me, even from a year ago and cry because I don’t recognize myself.

People can’t see how every time I go to sit up or stand I faint or see all black or have to take a few minutes before getting up or how I feel blood rushing and hear it in my head and ears and my heart racing over 150 for no reason. People can’t see the pain in my spine or my neck or my head or my body, but it’s very much real and there and makes it impossible to do a lot of things without struggling or feeling like a hangover after doing something that would push me too much but have no choice.

People can’t see how my insides are falling apart and failing me. People can’t see that I don’t take any pain meds and suffer through the days because everything that has been prescribed has not worked or has horrific side effects. People can’t see that some days I watch the time pass just feeling numb and empty. People can’t see the unpredictability of my health each day or that I wonder if I will make it to grow old with my husband and watch my kids and grandkids.

People who judge or make assumptions about people with chronic illnesses/diseases have never been put in a position where they have to do whatever it takes just to survive each and every day. People don’t realize everything I do, I do it with pain, and just because you can’t see the pain doesn’t mean it isn’t there. It’s very much real, I’m just real tough and have no choice but to get through the days and be there for my family. If I didn’t make the effort I make I wouldn’t have a life, I try so hard every day and motivate myself which self-motivation isn’t easy, but I have no other choice.

I make the effort for my kids, and just because 2-second photos on social media seem like life is great doesn’t mean I’m suddenly cured. It means I make the effort for my kids and not to remember me being or looking chronically ill and have normal photos of me for memories.

I’m in pain no matter what I do and people don’t see that. I don’t want to disappoint so I tough it out and push through every day and I’m still capable of smiling! I don’t need pity and I know I’m very strong to have to live this way and try to make the best of what was given to me. This is just a little bit of what it’s like with a chronic illness or disease.

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