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 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.

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 from side to side. 

Oh sure, it slows down ever so often, but it never entirely stops. Both the relief and the frustration of it all is in the downhill coasting. You're really moving. You've got the 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 while. But then it seems we find ourselves repeating this same process over again. And yet again, we can find ourselves back at zero.

This repetitive process of working so hard and long for little gain can be 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. 

Myriad doctor's and therapy appointments, treatment protocols, supportive home therapies, specialized diets, food preparation, juicing, ongoing research, etc. 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 pretty exhausting when you're already running on empty.

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

It has been my experience that not everybody can hear the truth of my struggle, which by the way, expressing them—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.

Truthfully, not everybody can get in the dirt with you. Not everybody can be in it 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 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. No part of life 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 downtime 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 live our lives free from sickness, exhaustion, pain, debility, and limitation. We want to have the health and energy to do fun things and make a difference. Mostly we just want to simply go about the business of living our lives too.

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

It is also true that I 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 a few. And that understanding His perspective and timing are essential.

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

Still, the journey is difficult. I don't always understand. I don't know why so many of us, including children, suffer greatly from an insidious disease that wreaks havoc on our bodies and is 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 know why some people cannot get the proper treatment they need and deserve. 

This, however, is where my belief in divine 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 then justice will be duly served one day. 

That's my prayer, at least. 

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 many. I didn't personally know her, but at 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 myself.

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 struggles. So let the tears fall. Let them be our voice and 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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To My Chronically Ill Friends

I know you.

I know how sick you are. I know how hard it is. I know the crazy roller coaster ride you're on. I know how getting out of bed is more than you have the energy for on many days. I know you push yourself to do even the simplest of things.

I know you're investing everything you have, and even some of what you don't, to get well, feel better, and take your life back. I know you never imagined it would be like this. I know the obstacles seem insurmountable. I know people don't understand.

I know the frustration of not being heard, of being dismissed, overlooked, and misunderstood. I know the discouragement of doing everything right and still see little to no improvement. I know the ups and downs. I know the heartbreak and disappointment you've felt. I know the struggle. I know the mess.

I believe you.

I believe what you say. I believe the unbelievable things you've been experiencing in your body. I believe how surreal it all is. I believe how very hard you work to get well. I believe how much you try to balance everything. I believe you try to be strong for your loved ones.

I believe you're caring, competent, and capable. I believe your ability to persevere through such extreme hardship speaks volumes about who you are. I believe you inspire others. I believe you are making a difference. I believe your story matters. I believe you will overcome this.

I feel you.

I feel your inner struggle. I feel the burden you carry. I feel the aching and longing for change, for something lasting and better. I feel the deep-seated determination you have to see this thing through.

I feel the utter disbelief and outrage at the ignorance and insensitivity within certain aspects of the medical community. I feel your growing desire to escape it. I feel your drive to educate them. I feel your compassion and empathy for others who are also sick, in pain, and struggling with their own circumstances.

I understand you.

I understand the depth of what you go through. I understand the undercurrent of emotions. I understand that you've lost so much along the way. I understand not everybody can see it.

I understand how very different life is now. I understand your uncertainty. I understand those moments of despair. I understand the limitations and how frustrating they are. I understand the loneliness. I understand the brokenness. I understand the words that are often left unspoken.

I understand the need for retreat. I understand how you want to get away but can't. I understand the times you need to be alone. I understand your silence. I really do.

I understand the need for total diversion. I understand how getting out is not necessarily about physically feeling better but about doing something just for you. I understand your desire for simple joys.

I see you.

I see your true colors. I see what you go through. I see your resiliency. I see your courage. I see the love you lavish on other people.

I see the hopes and dreams and wishes you still carry in your heart. I see the depth of wisdom and knowledge you've gleaned through the many long years of suffering. I see how you willingly share it.

I see how you take the time to listen to others, even when you aren't feeling well yourself. I see that you're going through more than anybody else really knows. I see that you're hurting.

I see how easy it would be to give up. I see how you've held on. I see how you've stood your ground. I see the deep faith that sustains you. I see, though your body is weary, just how very strong you really are.

I hear you.

I hear your cries. I hear those held-back tears you shed when no one else is around. I hear your heartfelt and gut-wrenching prayers. I hear your prayers for others; how you ask God to help them hold on too.

I hear your words of support and encouragement. I hear you cheering others on. I hear how you rejoice in another's health victory; how it's really a victory for all of us.

Though buried beneath the exhaustion of illness, I still hear your passion for life. I hear the inner hope with which you speak. I hear your unique expression. I hear the truth of who you are.

And you are beautiful! 

I love you, friends.

You are not alone.

Michelle