A 26 Year Old Spoonie Shares Her Story (Part 1)

My name is Nicole.

I am 26 years old, and a Spoonie.

Ever since I was a baby there was always something underlyingly wrong with me that held me back in life and kept me from being “normal”.

I never had the energy other kids had.

I was asthmatic and my heart rate always spiked whenever I exercised (or even walked around) which would make me out of breath and give me an asthma attack.

I spent every recess in the nurse’s office because of my horrific environmental allergies, and instead of playing with other kids, I colored or talked with my new friend, the nurse. She still remembers me to this day. I did learn a lot of medical things while spending every recess with her; everything from basic first aid, to how to treat a headache, to when to call for an ambulance. So, I guess that time wasn’t completely wasted.

There were concerns I had Cystic Fibrosis, but testing was negative.

I grew up as the kid who was always sick. My immune system was very low and I caught every cold and bug out there. Every time I got a cold, I would get bronchitis and end up on antibiotics. This STILL happens.

I was always underweight and built like a beanpole.

My doctors over the years have given up trying to fatten me up. I eat and eat and eat, and very rarely gain. At 5’4.5”, I still only weight 102lb on a good day. I’m usually closer to 98lb. The comments from strangers that I’m “so thin I could disappear in a picture” and that I “need to eat a cheeseburger” get really old. I’ve lived all my years being put down for being so thin, and was even called anorexic in high school. Relentless bullying has given me self image issues I’ll probably never recover from.

I have been a horseback rider since the age of 8 (the youngest age the local barns would take on new students). It’s my only passion, the only thing that keeps me motivated to keep going and keep trying to live. It’s an expensive passion, but every dime spent is worth it for my mental health. I have found it helps my pain levels considerably, too, as it relies heavily on upper body and core strength. I am unable to do any other type of exercise without paying for it dearly in the physical sense. I believe since I have been riding for so long, my muscles developed in one manner, with one purpose, to support my body in my sport. I stopped riding for several reasons, mainly financial, after my freshman year of college. I would only ride about 3 times a year, if I was lucky enough to find a stranger who needed help with their horse. It took about 5-6 years for me to finally get back in the saddle regularly. As a result of this, my pain levels escalated quickly from the ages of 19 to 25. I lost all my muscle strength I had built up for so long.

In 2014, I finally gave up. I had quit numerous jobs due to my pain, and was only working 20 hours at a desk job, still couldn’t move without cringing, and every day was filled with blinding pain. I filed for disability and was denied because of my age. Instead of reapplying and going through the draining process, I moved to Florida to escape the bitter Massachusetts weather and constant barometric changes. I had hoped my pain scale would lessen with warmer weather and less allergens. I was thankfully correct. I now am able to work a 40 hour week and have enough money to ride. I started riding in January 2016 again, and my once a week lesson is my salvation.

My muscle tone is very, very, slowly starting to come back, and while I am still in a “crapton” [as I say] of pain, I am able to press on.

Read the second part of Nicole’s story here.

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Tags: Asthma, Bronchitis, Cystic Fibrosis, Ehler Danlos Syndrome, Horse Therapy, Pain, Spoonie, Thin

Real Life Stories | TinaMiller | May 21, 2016 1:06 pm

2 Comments

By Hannah @Sunshine and Spoons, May 21, 2016 @ 1:42 pm

This story really resonated with me. My childhood was pretty much exactly the same as hers.