The Things That Slip Away….

My posts usually start with a moment of introspection; today is no different. I was standing in front of the mirror and happened to look at my ears, and what I noticed (not for the first time) was that my piercings have grown in. I sought to try and remember the last time I wore earrings and surprisingly I realized it may have been as long as a year or two. The significance of this is that it is just one more thing that would in different circumstances be just part of a normal routine… a no-brainer part of life. 

I don’t think many people understand how drastically different the day to day life of a chronically ill person is and I am realizing what is lost is in the small things. You see people may understand when illness keeps you from not attending events, not being as social, tiring out easily, the limited diet and all the rest, but I think they may not comprehend how the life perspective of an ill person is so very different and how daily life has been stripped to it’s bare bones and what is lost is all the small things. 

If it’s “extra” it doesn’t happen

So I’m a girl and many things I may mention are specific to my gender (after all guys let’s admit we are higher maintenance). 

My routine when I am going to leave the house is not what it once was. I remember the days when I spent more time on my hair, when I wouldn’t leave the house without full makeup, when I actually put thought into an outfit and (gasp) yes used to have a decent fashion sense.

This isn’t true anymore for a few reasons; apathy/lethargy/indifference/listlessness/dispassion/detachment… fatigue. It is that thing I have talked a lot about I call survival mode. You just shut down and live one foot in front of the other, shuffling, not running or thriving. I am learning that beyond just chronic fatigue and brain crud there are some real physical reasons for this apathy/detachment that accompany long-term illness, but that’s not the point of this post, rather it’s the effects of this on your life.

💠I can’t recall the last time I used a flatiron or curling iron. 

💠I almost never wear lipstick.

💠I almost never think about jewelry, much less bother to wear it.

💠I do pretty minimum with makeup just enough to make sure I don’t look heinous. *

*accept for some doctor or IV appointments, when I don’t care so much about looking heinous.

💠Personal hygiene suffers. No I don’t mean I don’t keep clean, but anything extra like plucking eyebrows, shaving, taking care of my nails and other stuff doesn’t happen.

💠My shoes only get changed and replaced when they have holes in them. 

💠I haven’t enjoyed clothes for years and I don’t like much less enjoy anything I wear. Clothing for many years has been about nothing but covering up my edema and the parts of my body that betray me. And it’s not like I have extra money to buy much in the way of clothes anyway. 

Confession: I am never comfortable in my body and it is almost it’s own entity that I am tied to with no release. It’s constant pain in varying degrees, the water retention is a constant source of discomfort and embarrassment and even if you think you have my full attention when I’m with you, you don’t. A piece of my mind is always occupied with my physical self and the aforementioned manifestations. 

There is probably a lot I’m not thinking about right now, but I guess I am just getting to convey what bare minimum looks like for the chronic illness sufferer, and how there is no such thing as fullness or completeness, everything is only a measure including your access to yourself. 

We are all only pieces of a whole, percentages of 100, slices of a pie. You may not see much of us or get 100% when we are with you, but we don’t get that from ourselves either. It’s all those little things that have slipped away….

Are We All Crazy?/Sanity Is Relative

I think “crazy” is not so easily definable as we think sometimes and has levels and facets, different causes and effects. I think we can all dip into “crazy” from time to time in moments or seasons when our view of the world is warped through the lens of something that throws us for a loop.                                                              Another definition of crazy is “not in one’s right mind.”

I have asked this question of myself many times on days when my brain and emotions betray me, when my view of the world and my situation in a given moment seem warped; “am I crazy?” Not all the time of course, and not as a constant, but there are times when I know I’m not in my right mind. 

Now we know that Lyme and coinfections cross the blood brain barrier and can literally infect the mind, but I think many times it is more complicated and more subtle things going on than even those factors. You see the entire life paradigm is different for people with certain chronic illnesses and not in rhythm with most people. The box we live in and our life experiences are very different, especially after living this way for many years. So I guess it makes sense that we are not always normal. After all, normal is a sliding scale based on majority.

The idea for this post came lying in bed last night after seeing posts from other Lyme/Chronic Illness sufferers on Facebook and thinking that what we suffer physically, cognitively and emotionally can make our viewpoints and behaviors pretty skewed:  I see desperation, scattered emotions, TMI, prolific postings, saying things publicly that shouldn’t be said, weird viewpoints that seem to come from places of isolation and disconnection. But I sometimes do it too, and honestly I struggle sometimes with how to balance being honest and “real” in the moment and when it would be best to keep stuff to myself. What’s the answer? I don’t know. I do try and consider my audience; my blog and Lyme page is primarily for fellow sufferers and those that will come after us, to know they are not alone. It is also for friends and family of the ill to get a window into this world. But from time to time I do regret some things I put out there, primarily to my healthy friends, I really must come off as cracked once and a while. I start to second guess myself especially if I get no response to texts or emails and I think people must have a negative opinion of me.

 But if we are talking brain stuff, even beyond Lyme and coinfections there is so much that effects the mind it is incredible. Honestly when I consider the complexity of our brains and the 100 trillion (yes, trillion) neuron connections in our brain I am in awe that the chronically ill with all that we are dealing with are not stark-raving mad. Really  We are fearfully and wonderfully made.
I had two doctor appointments this week and even though these two brilliant physicians come at treatment and diagnosis from different directions the conclusions are compatible. I cannot even begin to repeat the science and biology that was explained to me by these two doctors who can talk complicated biology and genetics like most of us do daily English about what is going on in my body, but I remember a few things: Pooling dopamine in my brain, dysautonomia, receptors not communicating, parasympathetic nervous system not doing its job….. But what is great is to get validation on the feeling of “disconnect” and yoyo emotions (aka crazy) and knowing that there are real physical reasons behind it. This also helps me understand the ebb and flow of having cycles where I don’t feel in my right mind and not knowing why I feel more normal on some days than others. 
So what’s the point of this post? Not sure. But maybe if your chronically ill friend that “looks fine” doesn’t always seem rational, maybe they are experiencing a little slice of crazy.