Tuesday, July 26, 2016

On Chronic Pain and Utterings of Joy

ATC Sized "Utterings of Joy" - Small works by Crystal Marie Neubauer
This morning I left for a couple of appointments and knew within 5 minutes that I wasn't going to make it. I wrestled with it at first, not wanting to get any further behind on my schedule, but I knew I was going to make a bad situation much worse if I didn't heed what my gut and body was telling me; I am in a serous flare up of symptoms previously thought to be Lupus, Connective Tissue Disorder, and Fibromyalgia – newly diagnosed as Chronic Lyme and I needed to go home and get back in bed.

You don't think about bones much unless they're painful. 

Stub your toe, fall on the ice, whack your elbow on the counter, these sudden impact occurances cause the kind of severe pain that I've been experiencing on a nightly basis. Except those one-off incidents, while painful, subside after a time. Jump up and down holding your foot trying not to swear, rub your elbow while tears stream down your cheeks and you make jokes about your "not-so-funny bone", and the sharp intensity of it subsides to a mere throb, then finally just a memory that makes you wince and then it's gone.

But my nightly pain is more like a severe toothache- in that unrelenting painful throbbing that demands all of my attention kind of way. As a matter of fact, it is a toothache. Not just one tooth, but all of them. They suddenly feel too big for my mouth and I can feel each one as a sort of sensory X-ray, along with the jawbone surrounding them. And the cheekbones above them. And on into my eye sockets. Throbbing pulsing bone pain that does not stop. I feel each pressure point where my head rests on the pillow, where my knees and hip bone meet the mattress. It is a memory foam, cushy comfy new mattress, but some nights the pain makes it feel like a concrete slab.

At night, I feel my skeleton more than my skin, but my skin- oh how it burns. The backs of my legs, my buttocks, wrapping around my knees, up towards the center of my back and down to the bottoms of my feet in an all over body neuropathy. It burns with that sense that I stayed out in the sun too long but deeper, the way it does when you exercise for the first time after years in the easy chair. My ankle tingles and that crawling electrical-gone-haywire sensation climbs up my limbs, across my shoulders and becomes a full on numb sensation on one side of my face, especially when I hit the proverbial wall. The one where I know I have pushed myself too much that day. And to make it especially challenging, the wall moves from day to day. Some days I shower and get dressed and decide to dry my hair then there it is, I am done for the day and I have to lay back down. Like today.

The exhaustion never ends- it is debilitating and muscular. The closest description to accurate I've read is having the worst flu and the worst hangover of your life all rolled into one. It is a vicious cycle when laying down is the remedy and the trigger. When I am up and moving through my day, the intensity of the bone pain and burning skin give way to muscle spasms and joint pain, which is migratory- but almost always starts with the bottom of my heels in my feet. I get out of bed, or out of my car, or up from my work table and feel like someone took a hammer to them- right on the bottom of my heel bone. I hobble and limp until it stretches out and I either grow numb to it, or it releases enough to function. If I stay on my feet it will decrease, but sooner or later it begins in my knees and occasionally that one special place in my hip, as it lets me know I was moving a little too fast and a little too confidently.  

The tingling also roams - to my hands, my feet, my knees, either one side or the other. And then throughout the day come strange sensations that I can only describe as internal waves of unwell. I'm working in the studio, or talking to a friend, or walking through the grocery store and it rolls up from the floor and rises to my head with a weird feeling similar to when you step off an elevator, but coming from my insides. It happens fast and I am hit with an overall feeling of pre-nausea, that moment just before you know you're going to throw up, but I never do. It lingers anywhere from several minutes to several hours with little dizzy spells and lightheaded sensations to make it extra special.

Depression and anxiety are also symptoms. It is hard to sort out when it comes because of the pain or as a companion to it, but it doesn't really matter. It is there when I have days with nights like these. And this week has been filled with days with nights like these. It starts with an increase in my detox supplements- a necessary step if I ever hope to get well enough to try to treat the Lyme directly. Each time I increase the dose, these symptoms, many of which have already been my reality for years, flare up to this near unbearable array.

The depression doubles down and whispers it will never get better.

It will never get better.

It will never get better.

There is no relief in sight. It will never get better.

Particularly dark thoughts come when each painful pulse is accompanied by this whispering thread. 

It isn't a mood. It is a symptom that is as real and powerful as the physical pain itself. 

Hours are spent each night going through the same routine. Toss and turn trying to get comfortable, a few hours of light sleep before waking in unbearable pain. Then maybe if I try the lavender oil, or an extra dose of the magnesium, I'll get enough relief to fall asleep, but it usually doesn't work. My mind ticks through the list: Maybe I should get up and take a bath? A hot shower? Maybe if I wrap the ice pack around my neck and put the heating pad on my back? My heating pad is my constant bedtime companion. But each of these remedies bring only a moment of relief before the change in my body temperature causes a reaction similar to a menopausal hot flash accompanied by that rolling elevator of nausea rising and I am tearing the covers off and nearly crawling out of my skin while the room spins. 

When daylight finally comes it takes a while to drag myself out of bed. 

My daytime symptoms, along with the pain and fatigue, include hyper sensitivity to noise and light especially in the early hours. Things as benign as tap water or lipstick cause a blistering swollen rash inside my mouth - my body's response to the toxic load of going undiagnosed and untreated for so long. 

Hyper sensitivity to food and increasing allergies is also a common symptom of Lyme. 

My neck stiffens and has knots along each side, as it clicks and sounds as if bone is grinding on bone. A symptom that I was shocked to find out had anything to do with this illness, but each increase in my detox regimen brings a little more mobility, one tiny glimmer of hope that I am on the right track. 

My hands tremor, my insides often feel like I OD'd on caffeine. 

I can feel my brain shaking. 

My heart rate speeds and slows and slams and beats out of my chest. I haven't had acne this bad since I was a teenager. 

Cognitively, memory problems present themselves by way of forgetting my words, not being able to match names with faces, and getting lost on the way to the same grocery store on the same route I've taken a million times before. I look up and get that sense that I am lost and nothing around me looks familiar and I grow anxious as I drive looking for anything, anything that will spark my recognition. Thank God for cellphones with GPS. 

I could go on and on with this, but I am fairly certain you may not have stuck with me to read this far. I mean, come on, it's depressing! 

Many of these symptoms have plagued me for years, but now they are flaring to the nth degree and coming all at once. I don't know how long I will have to go through this, or if it will ever get better. I have the double whammy of finding that my body does not detox the Lyme or the mold or other toxins on its own, so treatment is going to be long and slow and painful. Someday I may share what happens when I take anything that kills the Lyme, but this is enough info for your reading pleasure right now. 

You might feel worse after reading all of this, and I am sorry for that, but somehow it made me feel better to write it all down. 

To purge just a little bit, the loneliness of the experience. The harrowing pain of it all. To know that someone else can read this and maybe get a tiny glimpse of understanding. I don't really look sick – unless you've noticed the bruises or the acne or the dark circles under my eyes. 

Or caught me with my head on the steering wheel as I give in to the knowledge that I am not going anywhere today.

It is hard. It is very much out of my control. And there is very little I can do about it. 

I am not too stubborn or proud. I don't want to be doing this on my own, but the support of a companion is not there. That's not an indictment, but it is a fact that I cannot change. So I either go through the sickness of detoxing on my own, or I go through the sickness of not detoxing- this illness is not going away.

Either I make the best of each day and try to find my light, or I don't. 

It is up to me and it isn't.

I am alone and yet I am surrounded and filled with the presence of God.

Each day shifts and each day stays the same and I move forward and release the toxic load. One pill, one symptom, one memory, one emotion, one day at a time. 

I don't tell you all of this to wallow in it. I had a completely different post in mind to write- something witty and uplifting and encouraging to be sure. But this is where I am today, and I know it is hard to read or hear or believe.

It can be tempting to look away in the face of other people's pain. We only have so much compassion to go around before we have to shut down. Some of us do it more quickly then others. But pain, in all forms, is universal, and we don't have to suffer it alone. 

I have been on the verge of giving up, even though I don't know what that looks like. But then I remember that I am really not alone. I have all of you. And I have faith – no, it isn't that I have faith, rather I know that faith has me. 

And it isn't that I have God, but I know that in spite of the whispering lies of the darkness, that God has me.

Thank God He has me.

Thank God He has me.

Thank you God that you have me. 

And I still have art. That's what I am celebrating today.

That I can still step into the studio on good days, and even most of the bad, and release all of it by way of these wordlessprayersThese scraps and these bits, and this pain, and all of the darkness and the light. It all comes together with a bit of paste and a song or two. 

My offering sent up to the heavens and returned in the form of tiny utterings of joy


  1. Hi Crystal. I am so very sorry to read all that you are going through. How awful. I am holding you in my thoughts and wish you some reprieve. I hope you find some moments for the healing of art. Lots of love to you.

  2. So sorry you are going through this Crystal.
    Is there a support person or group that could help you?
    Please don't give up.....there is always hope.

  3. This IS hard to read! It makes me thankful within myself that my life issues are minor by comparison. And thankful that by your word you are in the hands of Almighty God. You will come through this knowing Him like never before - a gift enjoyed the few who endure. Praying for you.