Life with a Chronic Illness: sometimes I don't recognize myself

Saturday, April 29, 2017

Sometimes I don't recognize myself.

Right now is one of those times.

I hate this version of me. I hate that my illness is taking up more space in my life. I hate that it's becoming more difficult to hide, more difficult to ignore, more difficult to function.

I know that I sound desperate but I feel desperate. I don't know how else to feel when I'm almost out of treatment options? When I have tried the newest break-through medication and it didn't work? When there is only one more medication to try if what I am trying now doesn't work?

I don't just sound and feel desperate, I am desperate. Desperate enough to suggest and agree to a crazy idea - trying to re-train my body to tolerate a heart rate that is less than half the rate its use to beating each minute. Desperate enough to have no clue if this will work, but certain that I will feel horrible in the process of finding out. I'm on day five and experiencing every symptom I knew I would - nausea to the point that eating isn't happening, shortness of breath doing nothing, chest pain and pressure, exhaustion, brain fog, dizziness and the sensation like I'm about to pass out more than not. Desperate enough to keep taking the beta-blocker even when that means having a conversation with the husband about at what point would he need to call a squad.

This week I am feeling the weight of a chronic illness - a life-long illness with no cure.  And in these moments, it's hard to ignore the nagging questions in my mind. It's the horrible "what if..." questions that I don't want to think about. They've been in the background since my diagnosis but they are becoming louder and harder to ignore.

What if this is my new normal? What if I continue to get worse? What if...? The questions continue and only get more dismal. 

I'm struggling. My chronic illness is suffocating and threatening to erase who I am. But perhaps I am kidding myself. Who I am now is a far cry from who I was. Four years ago, everything shifted in my life. My health was no longer something to be taken for granted but something that needs to be fought for on a daily basis.

I am angry. I'm angry that despite everything I do to appease my autonomic system, I am having more bad days than decent days. I am angry that a good health day isn't even thought about anymore. I am angry that my chronic illness affects my ability to be a wife, mom, nurse, graduate student, friend... it affects my very being. I am angry that I just want to function.

I am struggling. I know that fighting with and against myself is not productive, but I am struggling to give up more of who I am and settle for who I am becoming.

But I am also hopeful. I am hopeful that maybe this medication experiment will work. I am hopeful that maybe the last medication available for me to try will work. I am hopeful that in the future there will be more treatment options. I am hopeful.


  1. I am so sorry LeeAnn:(((( I love you! I didn't realize that your heart surgery didn't cure you! I am praying for a miracle for you!

    1. I will always be thankful that my autonomic issues lead to discovering the heart defect and subsequently I was able to have surgery - the heart defect carried a high risk of sudden cardiac death. Thanks so much for the prayers!!!


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