Day 274: I Know You Mean Well, But...

WARNING: Gollum wrote this post. Proceed at your own risk.

Unsolicited Advice--It's the bane of chronically ill people. When you're sick, it's seems like everyone, everywhere has something to say about a) what you "should" be doing or b) how you "should" be doing it. 

Over the course of a year, I've heard a lot of mind blowing stuff:  how I'd feel better if I were more religious, positive, active, how I shouldn't take herbs, antibiotics, how I should be grateful that I don't have to work, miscarried, didn't have babies.  The thing I HATE hearing, more than anything?

"You're too focused on illness." Or, "You're letting Lyme consume you."


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Don't get me wrong. I GET the love behind this statement. After all, there's still a me in here. I am not my body. No one can be happy when they focus on misery all of the time.  I'm pretty sure I've written about these things.  Still...if somebody can tell me how NOT to think about Lyme 24/7, when you are impacted 24/7, I'd love to hear it.

For example, take my last 24 hours  (a day in the life of a Lymie)...

Wednesday PM
9:30--Go to movie with family.
9:50--Start feeling "sick" from noise and lights (despite wearing earplugs). Heart races, legs twitch/convulse, body starts feeling like I am getting shocked.
10:00--Ask husband to drive me home when he notices my legs are jerking.  Me: Tell the parents something so they don't worry too much. Then to him: "I'm ok."  Secretly, I wonder if I should go to the hospital.
10:00-10:15--Get on Facebook to see if any of my Lyme friends have had similar symptoms (ie: should I worry). They have. That helps.
10:15-10:30--Make/drink green detox drink (spinach, chia seeds, spirulina, and nasty herbs)...hoping I just need to detox.
10:30--Sit down....arms shaking, feeling weak, now cringing from pain in my back and ribs
11:00--Family returns from movie. Try not to snap at Mom as she talks to Betsy in a high-pitched, excited voice that hurts my body.
11:01--Lie to dad:  "Yes...stomach was upset." Then to everyone else: "Yeah...I'm alright." (No point in worrying them).
11:30--Take two, bitter, anti-parasitic medications.  Try to get the taste out of my mouth with water.
11:45--Take 15 more pills.

Thursday AM
12:00-12:30--Talk to Mom about how I am worried about her health and eating habits (did I mention she has Lyme too?).
12:45--Head to bed. Annoy husband by shutting the light off as I enter the bathroom because it's hurting my eyes.
12:50--Brush teeth in the dark. Use toilet...notice my pee smells REALLY, REALLY Baaaaad.
1:00--Lay down in bed. Heart's racing; body aches and feels like I'm vibrating inside. Try watching a movie, but can't concentrate or get comfortable. Feels like ants are biting my legs, hands, and nose and my body's being electrocuted.
1:05--Get up to pee....again.  Don't really need to. Just seems like it. Restless, restless, restless.
1:10--1:30--Try to watch a movie. Still can't sit still or pay attention.
1:45--Ask husband to push on hands, back, and shoulders to help the stinging pain. It makes NO difference.
1:46--Put earplugs in.  Try to rest.
1:47-2:00--Toss and turn, try to get comfortable...very, very hot.
3:30--Wake up choking/panicked because I took the green medicine and forgot to take the lemon one (PS I don't have a green or lemon medicine).
3:30-3:45--Snap myself back to reality.
3:45-4:15--Get up AGAIN to pee. Toss and turn. Try to go back to sleep, but can't get comfortable. Get increasingly annoyed. I NEED to rest. I have a doctor's appointment at 11:00am.
4:20--Give up and get out of bed.
4:21--Dizzy--I fall while walking..hit my hip on bed frame.
4:25--Go into living room. Try to get on computer, but can't see fine print.  Vision is blurry.
4:35-5:15--Settle for tv. Spend the 40 minutes trying to figure out new remote without turning on the light.
5:16--Finally, realize I've been cycling through the same 10 channels over and over again (Angel's Favorites). Turn the light on (which hurts). Fix it.
5:17--Half-heartedly watch a documentary about the dangers of sleep deprivation.
5:30--Open blog and read comment from a friend regarding yesterday's blog post: "I think in your quest for health and answers you've become obsessed with everything Lyme and Lyme related."
5:31-6:00--Think about comment...which I'm sure was meant to help....and become increasingly irritated.
6:01-6:50--Blog/FB/check emails.
6:51--Go back to bed.
7:15--Wake up startled/annoyed because I think Angel is rolling around, shaking the bed (realize it's me before I end up nudging him).
7:16-8:10--Toss and turn.
9:20--Wake up as Angel is trying to get ready for work. Ask him to wake me in an hour to go to the Acupuncturist.
10:20--Wake up soooo exhausted from lack of sleep and pain, I consider cancelling my doctor's appointment. Call for Angel to come and make the call. He can't hear me. So, I get up.
10:25--Go to bathroom to take care of biz'ness. While brushing teeth, notice tongue's completely coated with white furriness. Poo also has some sort of large Blood Clot in it. Debate digging in toilet to excavate, but decide a) I don't have time and b) It might needlessly worry family members.  Make a mental note to do some research later and keep an eye on things.
10:30--Mother bursts into tears when she sees me (I look that bad). Try to reassure her that I'm ok (just dealing with toxicity and lack of sleep).
10:31--Take meds and escape house, but not before being told I need to go to a Psychiatrist or a Counselor because I am "not myself" right now (Manage to grab a handful of almonds as I head out the door so I can take more pills...due in an hour).
10:32-10:54--Ride in silence to the doctors (which is enjoyable). Notice my stomach is hurting. Hope it's not related to the blood I saw this morning.
10:55--Go in for appointment. Go through crazy evening and list of symptoms. Burst into tears because I'm so frustrated.
11:20--In the middle of treatment, having an enjoyable conversation, when, out of nowhere, S-H-A-R-P pains sting my leg, arm, and other parts of my body.
11:21--I twitch, yelp, and cry. My Acupuncturist watches.  She's great about it, but the look on her face says it all...she's worried.
11:25--The needles quickly come out. I ramble about pain. Again, her face shows horror. She wants to say something, but won't. 
"You think I'm going crazy," I assert.
She just stares.
"You think THIS is MAKING me crazy," I shift the sentence slightly.
"Yes," she answers.
"You think I should be off the Ivermectin." I half ask/state.
"YES," she says...pointing out how it damages soft tissue.
I leave conflicted.

Thursday PM
12:00-12:45--Back home, I take my medicine, eat two strips of hormone/nitrate free bacon, call my other doctor about the blood work I am having done tomorrow, and go to Walgreen's to fill another prescription. In line at the pharmacy, I double over twice from stomach pain....which gets captured on the store camera.
12:46-2:00--Try to keep myself up long enough to take my second dose of Ivermectin before naping. Only make it til 2 (wanted to go til 4).  Down it anyway--2 hours early.
2:01--Give up and go to bed.  Dog wakes me up to go out around 5:00, but I'm too exhausted to move.  If she pees on the floor, I'll deal with it later.
6:15--10:55--Force myself up.  More meds. Green drink. Protein. Hydrate. CHEST PAIN. 

Still on the to-do list: Detox Bath, Enema, more meds, insurance mess, and researching blood clots.

I am not writing this to complain. I am writing this to shed some understanding. If I am obsessed with Lyme, I came by it honestly. This is not a cold. This is not a bad boyfriend. This is not something I am pointlessly wondering about, fascinated by, or interested in. This is something that's KILLING ME (mentally, physically, financially, emotionally). It's eating my brain, impacting my LIFE, causing me pain, confusion, and exhaustion...daily (not too mention what it's doing to my friends and family).

Can I make the best of it?  Sure.
Have I tried? I think so.
Will I stop obsessing? Yes. When I can walk normally, work again, kiss my husband, sleep soundly through the night, stop pulling worms out of my ass, remember things, speak coherently, enjoy hobbies, and stop having chest/stomach/leg/arm/head pains, I'm sure that will happen.  Until then, forgive me if I am a little preoccupied, self-absorbed, upset, depressed, consumed, or even annoying.

I'm going through a bit of a rough patch...

Altered Today: Letting the rant, rant.

Comments

[Melissa A.]

I love you and wish I could take away all of your pain and heartache. Thank you for being an honest, open book on your battle with this terrible disease. You're an inspiration to me and so many others, my friend.

[christine]

hi sweet kathy. not sure if you remember me...we emailed briefly after meeting on chronicbabe. i actually follow your blog pretty regularly. i LOVE your honesty. i relate. i often rant as well. it is a chore to try and focus on good things when we are stuck in a body that doesn't work the way it should. i feel like i grieve my body about once a month. (i mean REALLY grieve as though i've lost a loved one) we are angry when someone healthy says "smile! it will get better, focus on something else." those that are chronically ill can understand how utterly consuming sickness can be. we don't get reprieve. we don't get a vacation from pain. i respect you for sharing all of it. so no words of wisdom here, no unsolicted advice...just understanding and hope for a better tomorrow.

[Jrsn1234]

This seems obvious to me, Kathy. If someone hasn't been in your shoes, they just don't get it. I realize every time I read your blog that I am here to LEARN. As your friend, I desire to learn...and to understand. If I ever guilt you....feel free to kick me in the butt...because I AM NOT YOU AND I CAN'T GET WHAT IS GOING ON IN YOUR BODY. Unless you tell me. And I am willing to listen. Which I am. I love you. Write what you need to. I will continue listening. And learning.

[Saimz]

BOOM. Daaang. Tell it like it is, Tagzy baby!
<3 you mucho mucho for what you IS and what you AIN'T.

[Alter Everything]

Thanks for commenting, everyone.

Christine, Of course, I know who you are. HOW ARE YOU???? Would love to visit your blog. What's the link?

[christine]

hiya kathy. nice to be remembered. i am the same. good days and bad as you know. i don't have a blog...just a lame spreadsheet journal. :) i'm not as brave as you are! i have sort of hit the pause button on seeking treatments for my chronic pain. sometimes the treatments are worse than the ailment itself and i needed a break from forms, appointments, and lab work. so i'm here...enjoying the comforts of google and commiserating with good people like yourself! HUGS to you.