Does the waiting ever end in Chronic Life?

Living with one or multiple chronic illnesses involves a LOT of waiting.

We wait for doctor appointments, test results, pain relief, cures, diagnoses, people to understand, and so much more.

But does it ever end?

There is no simple answer to this question.

My chronic illnesses which include but are not limited to, fibromyalgia, psoriatic arthritis, psoriasis, degenerative disc disease, abdominal adhesions (from endometriosis and surgical scarring), and coccydynia, have all forced waiting periods into my life when I would have rather not been sitting around waiting.

The problem with all the waiting that has to be done is that waiting then becomes a way of life.

However, as I discovered after the first 12 years after my first diagnosis, there are some things that we shouldn’t be waiting for, like living.

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What was I waiting for?

My early chronic years were spent waiting for answers, test results, and most of all pain relief. Even though I heard my doctor say “There isn’t a cure, but we can treat the symptoms”, I wasn’t able to accept that I would never be 100% pain-free. I kept waiting for that unattainable dream of waking up without pain and being able to do whatever I wanted.

Although I had no choice but to wait for test results, to recover from surgeries, and for treatments to begin working, my life was meant to be lived.

Waiting to live caused me to miss out on a lot. I missed out on many opportunities to grow as an individual, to spend with others, to make memories with my family, and so much more.

My life didn’t change overnight, it took time, patience, and hard work to create a life that I am passionate about. Nor did I wait until my pain level became manageable, no I began carving out my new life while flat on my ass in one of the darkest periods of my chronic life.

Chronic pain or any new twists or turns that my chronic illnesses want to take will never hold me back again. Why? Because I won’t let them. If my body won’t let me do things one way, I will find another. If I have learned one thing throughout 20 years of living with my chronic illnesses it is that life should never be put on hold, no matter what I am waiting for.

Why are you waiting?

I vividly remember the day in 2013 when I realized that I had been waiting to live. That I had done nothing with my life since my symptoms began disrupting it.

I had lost over a decade of my life.

The heartbreaking part was that I was also raising children who were watching me wait. Existing was the last thing I wanted my kids to do.

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When I realized that I had been waiting to live, I had to ask myself why I did it. The answer came easily, I was waiting to be healed, even though I knew that would never happen.

Why did I wait so long for something I knew would never occur? Because being healed would make what I wanted to do so much easier. Friends, that hit me like a ton of bricks. I wanted life to be easy.

Life isn’t easy for anyone, even those who aren’t chronically ill have their challenges. Reaching my goals would never be easy or pain-free, but instead, they would require a lot of hard work and sacrifice.

Take a chance, don’t let the unknown diagnosis or unexpected flare stop you from creating a life that is filled with passion and purpose.

What can be done in the meantime?

I will be the first to confess that it is extremely difficult to think about the future while waiting on a medical test result or diagnosis.

If you are like me, your mind goes to all the worst-case scenarios and not one of them includes a future you can bear to think about. But we can’t allow the unknown to control our destiny.

Instead of continuing to allow my life to abruptly come to a halt, I began looking at alternative ways to make my dreams come true. If a particular diagnosis is going to dictate that I can’t do something the way I have, I begin looking for other ways to continue what I am doing.

For example, working from bed doesn’t mean that I am working less than if I traveled to an office every day. Nor does using a mobility aid make spending the day at Disneyland any less special than when I am on foot.

Currently, I am experiencing a flare-up from abdominal adhesions. Thankfully, my pain management plan is keeping the pain from my other chronic illnesses under control, because combined my pain level would be off the charts. However, the abdominal pain I am experiencing is forcing me to do things a little differently. Here is how I continue to live while waiting for relief.

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I accept assistance
Allow for a flexible schedule
Use mobility aids
Cancel or turn down anything that will derail me from what most needs my attention and energy
Practice patience with myself and body
Listen to my body and give it what it demands
Breathe: I allow myself to enjoy small moments and to be okay with living differently than my friends and family.
I forgive myself for not being the perfect, pain-free, superwoman I wish I were.

What are you currently waiting for?

References:

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