IC Journey

Stuck? Or Just Not Getting There as Fast as You Would Like?

Posted in Uncategorized by LJ Johnson on March 17, 2014



Life is complex in the best of circumstances.  I can’t think of a single life style that wouldn’t be (though childhood, now that I am an adult, was much easier – no wonder grown-ups would laugh at me when I would cry in frustration, “I wish I were an adult!  At least then I could make all the rules!”

When you develop a chronic illness, the adaptation process is not immediate, nor is it static – you don’t just one day “accept it.”  Part of this, in many cases, is because the illness itself is usually not the same day to day, and many are progressive.  Often, instead of treading water, a chronically ill person feels like they are in quicksand.  

I think one of the hardest critics most of us deal with are ourselves.  Last night while talking to a parent about my son and his future possible soloing in church, I said I needed to spend time giving him some voice lessons to overcome issues with singing too forcedly, bad breath control, etc.  She immediately said, “Oh my goodness!  I can’t imagine what you think when I sing up there!” Oops!  I realized immediately, of course, that I hold no judgments about other singers.  I was concerned about my son’s performance because of an unconscious worry about how it might reflect on ME.  Worse, it made me remember how much my parents contributed to my own performance anxiety because of their constant nit-picking about possibly holding a measure too long here, going flat there, etc.  They wanted me to do my best, and at that moment, I was.

We need to learn that sometimes staying just as we are – not improving any more at that moment – is okay.  Sometimes in those quiet times, we are growing and changing, and working towards a new understanding.  Like the frozen winter where spring waits under the snow, there are always new changes and rebirth awaiting, if we just allow ourselves some quiet time to reflect and grow.  

Quit being so hard on yourself…  me too.  


Do You Know Who You Are?

Posted in Uncategorized by LJ Johnson on March 3, 2014

I have had the joy or misfortune to be raised by someone who was getting their master’s degree in psychology while I was in my adolescence. This person readily accepted theory as fact, and always put it into practice. Every error or mistake was done “on purpose, just an act of your unconscious.” In a very real way, this created a woman who is never sure of who she really is. Even though I no longer am as convinced that I would be unintentionally hurtful to another person and actually have “meant” it (while being unaware that I had any hard feelings or intention to do so), when it comes to more complex things, like how I cope with and react to chronic pain and illness, it is a lot more confusing for me.

The other day I spent about four hours with a friend working on a house design. My bladder was being its lovely self, and lots of talking somehow means sipping rather continually on a beverage, so I was excusing myself three or four times an hour for bathroom breaks – my version of normal. During that four hours I drank about ten ounces of fluid. Usually when I know I will be out of my house I don’t drink anything anymore. It is how I accommodate functioning away from home. That being said, I don’t visit with people much anymore, just because of that – when you can’t hold a decent conversation because of your own interruptions, it is just easier to avoid them entirely.

I still read occupational and psychological therapy blogs and read that I am supposed to learn to accept my pain and cope with it, preferably without medication. I must admit every time I read this I feel so much shame! I was at a point where my pain levels made me physically ill (flares still will – I will sweat in a diamond shape on my face, change color, steam – I will steam over the windows in my car), and an observant person will see my distress, even if I am doing my best to just carry on. I often wonder if I gave up and took the easy way out at some point. Was pain medication worth it?

Then I read another article and all the self-doubt begins. One of the reasons is because I cannot be sure where my limit is. More than once, usually when frustrated or overbooked, I have pushed too hard and exceeded it. When I do that, I end up in a flare that makes me sick enough to put me in bed for two or three days. I try very hard to pace myself instead, and have my “always” activites, my “good day” activities, and even schedule how my always activities fall, mindful of recovery days if there is a lot of “always” that seem to come all at once (I am the mother of a teenager, and I do try to be there for things he does).

I wish that I were better at this. I am weighing counseling, wondering if they might help me better discern how to push myself and improve things, or at least reassure me that my self-awareness and self-analysis have insured that I am being all I can be, and accomplishing all I can with what I have.

One word about what I do accomplish: many others who are connected to me who share my illness believe I accomplish plenty. It is encouraging to me to have them share stories how my choices (I have some livestock that I take care of – they, and caring for my child, are the “must always do” list) have inspired them to choose their own “always have to” list, and have moved some from staying in bed to choosing to move. It is shared in the end – we inspire each other, and I am grateful for that.

If you are where I am, don’t lose hope. In the end, I think that is how we keep going and growing. If we are afraid to ask ourselves the hard questions, we don’t have much reason to move beyond our safe places.