Living with medical conditions means patients inevitably must confront life on an emotional roller coaster brought on by the fluctuations in their medical conditions.
I have written about success back, after two years, of waking up with my gut shut down. I did find a successful treatment. The success suddenly happened when I ended up with a cold and due to my inability to metabolize medication for congestion, I had turned to alfalfa tablets that a homeopathic doctor mentioned might work. So, I started to take alfalfa to dry up that congestion and to my surprise, the gut moved for the first time the next AM. This successful method lasted for a few years, even after second neck surgery. And now??……
Living with Ehlers-Danlos syndrome creates a life you live that is often unpredictable: a simple hug, turn the wrong way, step on something uneven, each can cause the body to shift out of alignment. One mild virus can also cause havoc in your system. Having dealt with a stomach virus that caused three bouts of vomiting, chaos began. The gut decided it was not happy and after all that work for so many years, it shut back down.
So, I am back to trying not to give up hope in order to attempt to make the best of daily home enemas and weekly colonics until my gut is rejuvenated. And then you have to add the emotion of being pushed backward. I have had to talk with myself to keep the emotions in check. I have simply realized that I know the old routine I have had to go through for two years and I understand how to make the best of it. Do I enjoy it? Not at all, but I need to live. We even traveled to advocate for the Rare Disease Conference and were able to have me do what was needed in our hotel room.
What bothers me the most:
- Going back to the older version of me.
- Losing AM time normally used for reading the paper and exercising. The home treatment takes time—and I never know exactly how long each session will take.
- And I tend to feel self-conscious about having to do the enema at home with my husband around too. He has never made me feel this way but still I do.
What I focus on:
- If I could turn the gut around after two years of no action, then why not succeed again?
- If this is the worst that could happen and I need to continue to return to living my life from now on with a nonfunctioning gut is: at least I am ok, alive and still doing things as before, despite this needed treatment.
- I need to clean the gut out so if not naturally, this is the best second to keep living life comfortably.
So, how about you, have you, too, experienced successfully rising to the top of the hill of progress and then fallen back down, too? It is one of the tougher things to cope with but we don’t always get a choice as to what our challenges will be. However, we do get to choose how we handle these issues and I am trying to choose to be positive and still find satisfaction in my daily life.
May life be kind to you,
Ellen Lenox Smith
Author of: It Hurts Like Hell!: I Live With Pain– And Have a Good Life, Anyway, and My Life as a Service Dog!
The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of National Pain Report.