The Definition of Better

Art by Jim Benton

A conversation with a friend:

"Kathy, I read your blog post and, honestly, it was kind of depressing. Don't you think you'd feel better if you focused on good stuff?"

The short answer...YES.
The more complicated answer...NO.

For 20 minutes, I tried to explain it....what it's like being shuffled from specialist to specialist, how my blog is an accumulation of emotions/thoughts/experiences,  the sheer frustration of consulting with 21 doctors in nearly two years, how sometimes I just need to vent.

He got it (and was totally respectful).

He was also confused...

Didn't I recently say my energy was improving???!?!?
Hadn't I just had a "good" day with a friend???
Am I not doing better than I was a year ago?????

YES....
And, NO.

"Getting better" is tricky with chronic illness.

Every time someone asks "Are you better?" I'm  conflicted.

Better than WHAT??? I think.

Better than when I couldn't get out of bed and feed myself? Yes.
Better than when I had to wear sunglasses and earplugs to watch a movie? Certainly.
Better than when I would fall over from pain in the gym/living room/grocery store? Amen.
Better than when I'd sit in a dark room with a migraine all day and cry? True.
Better than when I couldn't walk to the car without resting? Definitely.

That's the funny thing about better; the bar keeps moving.

When you have no energy, all you want is to be able to make it through the day without napping.
When you make it through the day without napping, all you want is to have enough energy to wash your hair, unload the dishwasher, go to the grocery store, and get through the day without some bizarre symptom.

That's still not happening.

This morning, I was jarred awake feeling like the left side of my head was being stabbed with an ice pick.
Last week, half of my face and legs went numb.
The week before, my left hand couldn't hold a fork.
Last night, I had two unexplained shaking/convulsing moments.
Daily, my body is burning and aching.

In between, there are glimpses of better: the absence of a leg ache after I've taken a muscle relaxer, an amazing burst of energy following a new Artemisinin protocol, the day only my right hip hurts vs. my right hip, my hand, my left arm, and my head.

But am I B-E-T-T-E-R?  Like sustainably better???
Not really.
Not in the way I'd like to be.

I'm not trying to sound negative, or victimy, or hopeless.  Just trying to share my experience, let others know they are not alone, and tell the truth (as I see it) about Lyme disease and chronic illness. 

LYME DISEASE
Some days are good.
Some days are bad.
Some days are intolerable.

When the first category outweighs the second and third,
then we can talk about better.

Disclaimer to those who don't read this blog frequently: This blog post represents a glimpse into my life with lyme disease: an on line diary of sorts. It does NOT represent the sum total of who I am as a person. By the time you read this, I might be feeling better or worse. I might be having a good day or bad. I might be smiling. I might be crying under the covers.  I write about what moves me, what inspires me, and what I struggle with....on a day to day basis. Lyme is a very up and down and journey. I try to include all of it. 

Comments

[E]

love you kitten.

[Melissa]

Love this! So well said, my friend. XO

[Jrsn1234]

If you don't have a chronic illness...it is hard to understand. I dealt with the same thing with my Mom's mental illness. Some things in life are hard to read. If you have never experienced these things, you have nothing to compare them to. I am diabetic. I have a small picture of what you mean. I have had physical sx that are uncomfortable. I get the energy thing. (I also have thyroid issues.) But, I can't totally understand everything you go through. However, I get needing to process. And that is why I find your blog easy to read. I want to hear what is going on with you. The good, the bad, and the truly ugly. I want to know what your reality is. When you share...I feel honored that I have the chance to hear it. EVEN on the bad days. But I think that I am used to seeing the pain in life. I grew up with it. My Mom trained me. That doesn't mean I don't value hope. I just realize that some days, hope is harder to find. Love you, Kathy.

[Renee]

So eat post, Kathy. Appreciate your honesty and openness here with where you are at, where you have been, and where you are going. It helps to write it out. If it is hard for others to read, that is okay. But strangely it does help to write it out. Sending gentle hugs your way today..........

[Renee]

OOPS!!!!!! What I wrote before my curser went wild was Such a great post....as my norwegian MIL would have said, UFFDA!

[Jenny Swart Rush]

The image at the top of this blog is hilarious. Totally get where you are coming from.

[victoria]

That's me! you said exactly what i say and think. Thank You.

[Eve]

I find you positive and upbeat. I am all about "the secret" and gratitude and positive focus; but there is reality...and u would just be a weirdo if u were only positive. I am sure you are helping a lot of people not feel alone in their illness; because really, well people don't want to hear about it. It's scary. I see you haven't posted all of June and I hope u r well.

[Crystal]

I found your blog when I searched for the fibromyalgia that I was diagnosed with last week combined with the severe Lyme disease that I had 5 years ago. I have sat here for the last 3 hours reading and what you are experiencing is such an insight and relief to know that someone else is having the same experiences. I also have the "seizure like" shaking at night, extreme pain that comes and goes as it wishes so severe that it takes my breath away or sometimes can't walk, strange rashes, eye problems (migraine auras, no headache) and recently muscle atrophy in my leg from limping on occasion. I was temporarily diagnosed with MS, Lupus, Graves disease and now fibromyalgia. I know it's all related to the Lymes ~ unfortunately, the only doctor that agrees is my optometrist who can't diagnose this. I've seen multiple specialist ~ not sure if they are incompetent or just dont care ~ and am starting to feel like I'm being treated like nothing short of a paycheck to them. I also have developed diabetes insipidus, with no known cause and think it is somehow related - so add constant dehydration to my symptoms. Thanks for blogging and letting others know that someone else is experiencing the same thing. Some days are really bad, some tolerable and some are good enough to forget that I have this problem. Those are the days that I embrace right now, no matter how far and few between they are! <3

[Alter Everything]

Dear Eve and Crystal--Thank you so much for your comments and sorry for not responding sooner.

Just knowing my thoughts/words make any kind a difference really means the world to me and I appreciate you reading and commenting more than you know.

Crystal, the day I read your message, I cried...and cried, and cried. Mostly for me, but also for you. Although I was too wore out to respond at the time, for months I've been thinking I really need to write back. How are you??? How are your treatments going? Hope you are well.

Eve, I will be doing an update soon, but thanks for worrying about my extended absence from being an every day writer. In short, I can't say that I am better. Some things are way improved. Others are worse. I am, however, learning to cope better and not get so side swiped by the pain and depression. It is definitely a work in progress.

Wishing you both heath and happiness.

[Sweetpeainsnow.blogspot.com]

This is so well said!! Spoken only by someone who truly understands!! I've just found your blog (I have Chronic Lyme), and already can tell I have found a gem!! Off to read more...

[Alter Everything]

Amber, Thank you for reading and commenting. I am so sorry to hear you have Chronic Lyme. The good news is, you are definitely NOT alone. If I can support you at all on your journey, please don't hesitate to reach out. Having to deal with this is bad enough, having to face it alone is entirely unnecessary (and maddening). Wishing you continued love, hope, and healing. XOXOO Kathy

PS Like your blog. Looks like you have a real talent for makeup! The picture of your eyes is amazing!!!