Thursday, August 8, 2013

The Long and Winding Road of Chronic Lyme Disease

I had a few better days last week.

Now, I'm not feeling well. Again.

Many of my other Lyme friends are struggling a great deal these days too. Is it the universal time for Borrelia spirochetes to divide and replicate?? Is something else flaring up? Perhaps other long standing co-infections that need attention? Or are our bodies just worn out from the constant fighting of pathogens and continual repair efforts? It's all so taxing.

Of course we know the constant state of flux we're in. This disease complex is so crazy up and down; I feel like a battered yo-yo. A yo-yo that’s been wildly flung every which way but loose for almost twenty years.

Or better yet it’s like the roller coaster ride that never lets you get off. It yanks you away through frenzied highs and lows, dips and drops, and sudden turns that thrash you about from side to side. Oh sure, it slows down ever so often but it never fully stops. Both the relief and the frustration of it all is in the downhill coasting. You're really moving. You've got momentum going for you. But soon enough, you hit the long climb back uphill. Again.

This speaks so well to the struggles of living with this disease. It can be very discouraging.

We work hard to get well, often finding something that helps for a period of time. But then it seems we find ourselves repeating this same process over and over again. And over and over again we can find ourselves back at zero.

It's this repetitive process of working so hard and long for little gain that can be so draining and disheartening. It's the constant daily doing that can leave us weary. And many of us have been "doing" for a lot of years. Treatment regimens, supportive home therapies, juicing, specialized diets, food preparation, doctors appointments, therapy appointments, ongoing research. Believe it or not, that doesn't leave much time left in the day. Working to recover from this debilitating chronic illness is a full time job. And it can be quite exhausting when you're already running on empty.

And then there are the losses that accumulate along the way. Some are big, some are small, and some fall anywhere in between. Physical losses are particularly difficult but then so are the loss of jobs, friends, livelihoods, dreams. There are different kinds of losses for different people. Nevertheless, loss is apart of this illness to some degree for all of us.

It's been my experience that not everybody can hear the truth of my struggle, which by the way, expressing my struggles doesn't mean I’ve lost hope or given up on my faith. If anything, this fight has taught me how to hold on, press in and persevere even more.

The truth is, not everybody can get in the dirt with you. Not everybody can be in it with you for the long haul. This is true for many things in life. And it's most certainly true in the long and winding road of chronic Lyme disease. But thank God for those rare and priceless jewels who can!

It's sometimes more than most people can bear. And I'm not blaming anyone for that because it's often more than we can bear a lot of times, too. Still, it can leave us feeling alone and misunderstood. The truth is this whole thing is really messy and absolutely changes everything. There is no part of life that isn't affected.

Clearly, everyone has to go on about the business of living. People have responsibilities. They have to work, go to school, pay bills, and take care of their families. And everyone should be able to relax and enjoy vacation and down time every now and then.

We want these things too. But many of us have to do them on top of being very ill, if we can even still do them at all. We want to be able to live our lives free from sickness, exhaustion, pain, debility and limitation. We want to have the health and energy to do extraordinary things and make a difference. Mostly we just want it so we can simply go about the business of living our lives too.

All of this is a truth that seldom gets fully understood by those who are on the outside looking in. I've said this many times before and I'm saying it again; no one can fully understand that which they've never fully experienced for themselves.

It is also truth that I personally believe God works in and through our circumstances; that He has His purposes and they are redemptive and restorative in nature; that He considers the many and not just the few. And that understanding His perspective and timing is important.

We should not dismiss, overlook or underestimate this about the Lord.

Still, the journey is difficult. And I don't always understand. I don't understand why so many of us, including children, suffer so much with an insidious disease that wrecks such havoc on our bodies and is so heartbreaking for our loved ones. I don't always understand why this truth is so adamantly denied, opposed and made light of. And I don't understand why some people cannot get the proper treatment they need and are deserving of. 

However, this is also where my belief in godly justice comes in. The truth cannot remain hidden forever. Justice will not always be denied. The powers that be will one day be held accountable. The whole truth will be revealed for what it really is. And justice will be duly served. One day. My prayer is for it to be soon. 

I also know we've all been pained by more loss lately in the Lyme community.

Last week, like many of you, I went on Facebook and saw that another fellow Lyme Warrior had died; a young, beautiful, beloved mother and friend to so many. I didn't personally know her but in that moment, the gravity of it all really struck me and I just sat there and wept.  

I wept for her and her daughter; for the rest of her family and friends. I wept for everyone I know that has Lyme. I wept for everyone I don't know who has Lyme. And I wept for me.

It was heartbreaking, gut wrenching and cleansing; all at the same time.

I know many of you were deeply affected as well. I could almost feel our collective grief. 

Sometimes I think only our tears can really speak the truth of our hearts. And our struggles. So let the tears fall. Let them be our voice. Let them express what our words cannot.

And let's keep on loving and supporting one another. Let's keep working to make something beautiful out of all this suffering.

With Love and Compassion,

~ Michelle

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  1. Gentle hugs and deep feeling for what you have shared here. You said it well.

    1. Thank you Renee. I know you relate all too well. Hugs right back, my friend.