If You Never Try, You'll Never Know

[sayvandalay]

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Nearly all my life, I've lived with pain. Around the age of 11 or 12, I sort of integrated regular pain in various parts of my body into my daily life. I didn't know it then, but I had a chronic illness. I wouldn't be diagnosed until age 35.

As a teen, my pain was manageable but consistent, and I had a range of other odd symptoms like fainting, racing heart (tachycardia), dizziness, and dry eyes. It wasn't until I entered my 20s that I began to realize that what I was feeling wasn't "normal." After a bad breakup at the age of 23, I started looking into just what was "wrong with me."

Fast forward.

After ten years of marriage to TOP*, we divorced amicably in 2010. I had been a stay-at-home-mom for five years by that point, but being a SAHM was no longer an option as a single mom. Uninterested in re-entering the teaching field, I took a job as a legal assistant in a small law firm. The job was mentally demanding, but physically I sat at a desk all day. The strength I had built up exercising and running after my young children quickly disappeared. After one year on the job, I was in the worst shape of my life with zero muscle tone. I had lost a ton of weight and could barely function.

In late 2011, two brilliant things happened: I got remarried and I met with a doctor who actually examined me. All prior physicians (and there had been A LOT) dismissed my complaints with one look at my "normal" body and "pretty, young" face. This new doctor was smart enough to know that some illnesses are invisible, and sometimes hoofbeats mean zebras, not horses.

What should have been an obvious diagnosis of Ehlers-Danlos Syndrome (hypermobility type), or hEDS, took over twenty doctors and nearly twenty years to be discovered. By the time I was diagnosed, I could barely get out of bed. Every joint in my body was subluxing and inflamed. I had what I now recognize was very close to a nervous breakdown. I couldn't work. I couldn't walk. EVERYTHING WAS DIFFERENT AND WRONG.

Once I got over the shock of having a genetic disease that would stay with me forever and had no cure (not to mention could potentially end up affecting my children as well), I did a lot of research. My conclusion was that I had two choices: I could get busy living or get busy dying.

Would I have literally died from EDS? Probably not - but I was merely existing instead of really living. I was in excruciating pain every day, all day. I had pain-somnia every night, and my anxiety had reached crippling levels. A simple walk to the bathroom sent my heartrate soaring to 150bpm.

Everyone with hEDS has varying degrees of severity and symptoms - even within the same family (it was later discovered that my paternal grandmother, father, and likely an uncle and some cousins have it as well). There are hEDS patients who have MUCH more collagen laxity than I do; some must wear splints on many joints, and some use wheelchairs or other assistive devices.

After my diagnosis, I was left wondering, "How bad will this be for me?"

I knew there was only one way to find out if I could fix myself. I got up - and I tried. I started with walking around my block once. ONE TIME. (It's a small block.) I barely made it, but I made it. I walked one lap every day until I could walk two laps, and then three. It was a painfully slow process, and once I made some significant progress, my hip joints became inflamed with bursitis and I had to stop walking. I almost languished in self-defeat.

Almost.

I felt that there had to be a way for me to get stronger. I instinctively felt that if I could just strengthen my muscles enough to support my lax joints and tendons, I could live life again. That day was the first time I took the plunge into the pool, four years ago. I took everything I learned in Physical Therapy straight to the water. I could do everything I used to do as long as my body was supported by the water! Slowly, I built my strength back up with water therapy and swimming. I still injured myself in the pool, but not as often. I began to really know my body. I learned to pay extremely close attention to every problem joint so I could stop a problem before it got out of hand.

Combined with a chiropractor who is knowledgeable about connective tissue disorders, monthly pain clinic visits, eliminating several foods from my diet, finally getting the right amount sleep, and taking the right medications, vitamins and supplements, swimming saved me. I am now stronger than I've ever been at age 43. I can do everything I used to do (within limits), and I live a full, satisfying life.

I now own my own business and work from home so I can set my own hours. McGuire Media, LLC became incorporated last year and now has five employees. Never, ever give up.



*the other parent