Some Honest Thoughts On A Sunday Afternoon… When Life Reshapes Hope

I have no answers today, no deep wisdom (I don’t think), only a seeking mind on how to perceive life as it stands and on expectations for the future.

I was thinking that our hopes and dreams are built on a foundation of what we feel is possible. We do not tend to realistically hope for things that are not in the realm of possibility; I guess if we do we call them pipe dreams. But when long term illness and passing years rob you of the possibilities that are still reachable for a “normal” person, how do you dream? What does Hope look like now?

Of course the first dream for anyone that has been sick for a long time is for health, and of course health is the gateway to everything else we want in life: relationships, activities, happiness, success, travel,  family…LIFE. 

Now chronic illness looks a little different for every individual; For myself I am immensely blessed that I have come a long way in my (5?) years of treatment since Lyme diagnosis and there has been a lot of improvement. But the struggles continue and I may continue to struggle with autoimmune and other conditions for the rest of my life. So as my “younger” years continue to diminish like a fading horizon line, I am wondering how to rebuild hopes that are now built on a different foundation of what is possible.

I had an emotional reshaping of my hopes with this last downturn in health (Relinquishing hope), and a lot that I had been holding onto for many years got torn down. I have been living in that place of rubble for several months now and I guess I am questioning whether rebuilding the hope tower is worth it. Of course it will look very different than before and be much smaller, but right now I’m not sure what to build it with. Or should I? Is that my job or God’s? Honestly I’m at a loss. I have never stopped believing that my future and hope is in God, that He has a reason and purpose in everything He allows in my life, but what His plans are (obviously) are vastly different from anything I ever envisioned.

So here I sit on a Sunday afternoon in an empty house with a silky terrier puppy for company (who is under my care for the weekend), feeling quite lonely for some reason and pondering all of the above and maybe letting myself cry just a little. I am looking at turning 38 the last day of this year, and the years don’t slow down. Life for the chronically ill is like a treadmill; running in place and never getting anywhere but expending energy all the same and there is no end for exhaustion. 

So friends, as I have said goodbye to children, to love, to independence, to fulfillment, to financial stability, to success, to travel, to normalcy, and all the perks that come with those things…. how and with what do I rebuild my hope tower? We shall see. 

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….