an unbelievably high cost

My friends,

There is a truth that most Lymies would like to express, but rarely say because it is so intimate. It is a fundamental truth of our lives that if received poorly  would feel devastating. And frankly, it’s just plain awkward. But if our loved ones could know this and believe it, it would be incredibly securing.

The truth is that literally everything we do has a high cost attached. Literally everything we do is a fight. Never once are we care-free anymore. There is thought, intention, strategy (and often anxiety) over anything beyond reaching for a glass of water — and even that isn’t entirely off-limits.

What do I mean? There are all of these hidden, deep, frustrating moments for a Lymie. Normally, people don’t cry or crawl as they fight to go up two flights of stairs. They don’t get intimidated by the thought of walking to the mailbox. They don’t put off showering for five days because they just can’t stand for 10 minutes in a row. This is what a Lymie does. Lymies may only put one thing on their to-do list for the day, and feel it’s a victory if they accomplish it. Lymies know that getting outside of the house even twice a week is “winning at life”.

When it boils down to it, normal life things — like cooking dinner or writing an essay — are huge things… and leave you recovering for many hours or even days. And small things are still big things: Talking on the phone for 5 minutes. Processing information in a meeting. Cutting your meat at dinner. Choosing tomorrow’s clothes. Picking up a child. All of these things have a tangible and noticeable cost.

In the end, no action, no thought is “free”.  Lymies pay dearly out of their physical, mental, and emotional reserves, so every action has to be weighed. Every action has to be prioritized. And not every action that is in our hearts is able to be accomplished.

Let’s just be honest… This sounds dramatic. The sad and shocking truth is that it’s not. Most of the chronically ill people who I know are major power-houses… They are the people who ran organizations, had four kids, and still managed to find time to serve others. Now, when I see them laying in bed week after week, I have this sobering thought… They are (I am) operating at 5-10% of what they used to. That’s alarming. That’s devastating. It’s so hard to comprehend – both for the Lymie and their loved ones.

Chronically ill people tend to have a hard time being honest about what their lives really entail, especially when they have an “invisible disease” (a disease where you are very sick but look normal). Sometimes it’s simply that they want to focus on the good in their lives, because they know it would be easy to wallow. Sometimes it is fear of not being believed, because of judgments made by people in the past. And sometimes, it’s because their lives are simply not easily understood. When you’re living with such apparent loss, sharing details feels tender, vulnerable, and intimate… Other people’s responses can be craved and feared at the same time. 

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I think that communicating difficult truths is like walking a tight rope. It’s difficult to know how to communicate in a way that is most helpful… That rare, beautiful footing which gives us freedom to be open and dignity to still be “Me” and not “Sick Me”. Each chronically ill person I know has had trouble with this. It’s just what happens, and it’s difficult to keep towing the line… Especially because each step forward restarts the balancing act.

Being honest to this degree has the ability to change how people think of us, and it feels risky.  We don’t want your perception of our identity to be “sick”. We don’t want to be uninvited from participating in life. But we do want you to know our world, so that we don’t shoulder it alone… so that we can feel known.

So, I want to say something directly to you, my dear Lymies, and I want to say something directly to your loved ones.

My dear Lymie friends:

Your life has a high cost attached, one that no one could ever fully understand. I am so sorry that even simple things are painful and long-lasting. I’m so sorry that it takes you two hours of great effort to get out the door for the day, and that you have nothing left of yourself when you get home. I know it’s discouraging. It is unbelievably tough to be constantly “on” — thinking about the ramifications of simply living life. And though it sounds cheesy, please hear me and believe me when I say that you’re amazing. Because life is costly for you. Any living… just breathing is a great feat. It requires strength just to get through the day.

And what is even more amazing is when you give your precious strength to anyone else. Baking a birthday cake, making a meal, dropping off your neighbor’s kids after school, calling a friend who had a rough day, holding a door for someone with full arms… It’s all amazing, because no one could ever know how much it costs you, and yet you do it anyway. There is this story in the Bible about a poor widow who gives her last two coins as an offering to the Lord. Meanwhile around her, all of these rich people are dumping in a lot… And Jesus says that she gave more, because the rich people gave out of their overflow but she gave out of her need.

When every action is precious, any offering of our time, our bodies, our hearts… is beautiful. It’s deeply beautiful to give out of what already feels lacking. My friends, you are very rich people by knowing the weight of what you offer. So, please, please do not be discouraged that your gift is small.

What you do is big. What you do is important. It’s enough. And when you literally have nothing, know that it is okay. You can only do what you can do. It’s heart-breaking to be so limited, but even if no one understands… You can rest in the integrity that you just don’t have it in you to perform an action. I hope you can rest in that.

And dear loves ones of Lymies

Even if you have always been perfectly supportive in the way your Lymie craves, they may still lean towards clamming up. If they are, my hope is that you will shower them with a feeling of safety, kindness and patience. As I have told you before, watching a loved one be sick is incredibly hard. Your job is hard. And I’m sorry for the struggle and helplessness you often feel along the way.

But since you desire to help, let me offer you some practical suggestions of what to do with the information I just shared:

  1. Mimic my encouragement that your Lymie is awesome, courageous, and strong simply for living, for continuing on.
  2. Keep inviting them to participate in your life (attend the birthday, make muffins for the bake sale, grab a coffee, read your manuscript)… Because even though it is a high cost, they want to be included. They want to try to be there. They care for you, and want to be part of your lives as much as possible.
  3. Communicate continually that their presence in your life is the real gift… That there is never any expectation of their doing more than what their bodies can do in the moment.
  4. Acknowledge that you see the offerings of their heart, and that it is more than enough, and appreciated.
  5. As always, I recommend offering any help that you are able. Chronically ill people have this tendency to think that people will eventually tire of taking care of them, so they stop asking… though what they are going through never gets better. When you think of it, when it is a fit for you… offer your help.
  6. Have grace any where you can. Living in high pain has a way of eating at you, and wants to consume you. Even with the best of intentions, your Lymie may wind up cranky, angry (at themselves, at the circumstances, or at you) as they realize that the cost is higher than they imagined. They may have over-committed and need to back-out, as their body wore out before expected. Your job is to “cover” for them when they can’t do what they hoped… to “cover” for them when they need patience or comfort… that’s hard, and beautiful. Having grace. Choosing to “cover” for them is amazing. You get to be amazing too.
  7. Remind them of all of the mushy, heart-warming, true things. Remind them that just because they are operating at a low percentage, doesn’t mean that they, themselves, have disappeared. They are just as “them” as they were before. They aren’t hollowed out. They still bring something to the table simply by being themselves. You love them always, and believe the best about them.

Finally… Have you ever felt an earthquake? Where I live, I’m constantly feeling tiny tremors, but I’ve never felt a big quake, certainly not anything inducing damage. Lymies live on the fault line. They feel the big impact of their actions and circumstances (controlled and uncontrolled) every day… Where the rest of us might only feel tremors. It’s exhausting, frustrating, and their body is actually falling apart. The problem is that the damage is hard to see. But it’s there, and the more we acknowledge it, the less confusion and misunderstanding there will be. I think we all want good relationships. It’s when life is shrouded in mystery, walls, pain… that we feel separated. So, let’s all keep talking. Let’s drag this thing out into the light, and take joy in being together.

While we wish Lymies did not have to pay such a high cost for small actions, let’s remember that we pay high costs in life for valuable things… and then we hold them dear. The smiles, the laughs, the little acts of service are big, beautiful, and meaningful. I delight in that. I delight in knowing what is valuable in life.

co-infections and opportunistic infections: it’s not all lyme

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My dear loved ones,

When your Lymie talks about their sickness, they probably talk about it in terms of their “Lyme”. What you may not know is that Lyme is the umbrella that we put a lot of sickness under. Granted, we really do have Lyme, but your Lymie probably has a long list of other things going on. For instance, I call myself a Lymie… but I have a dozen separate bacterial and viral infections that we’ve been trying to eradicate. These other infections are known as “co-infections” and “opportunistic infections”.

“Co-infections” are bacterial diseases that were transmitted to your loved one at the same time they received the Lyme Borreliosis bacteria from the tick. There are over 20 confirmed bacterial co-infections associated with Lyme, some of which have dozens of different strains.

“Opportunistic infections” are diseases that have taken hold because your Lymie is immuno-compromised. Viruses, fungi, parasites, and other bacteria thrive easily in an environment that is weak. These can be just as difficult to treat, or even harder.

Here is a quick look at some of the most common infections your Lymie’s doctor is sorting through.

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All of these other infections make treatment much more complicated. Doctors have to know when to hammer away at each infection, and generally, doctors first have to treat the co-infections and opportunistic infections before they can make real headway on the Lyme.

The real kicker is that all of these infections pile on more symptoms, more complications. Let me give you a realistic example of what is really going on when your Lymie loved one tells you they are having a “Lyme flare-up”. This is a good representation of a conversation I might have with a fellow Lymie:

“Well, my CMV and Epstein Barr are high right now, so I had to go back on Famciclovir and Acyclovir… I’m not sure if the fatigue and nausea are from the viruses or from the meds, but I’ve never been so wiped. And my Babesia is really active right now. Even before the labwork proved it, I could feel it. I’m having much higher pain and a constant fever. Everything hits the fan at once, so of course my Bartonella is back in full swing too. The tachycardia is ever-present, and my blood pressure keeps switching from very high to very low. I’m constantly having to drop to the floor to keep from blacking out. My cardiologist seems baffled by it, which is incredibly frustrating. The Bart (Bartonella) has also transformed into cysts again in my brain. I’m so confused all the time. I drag myself to the kitchen to eat, and I literally can’t decide what leftovers to pull out. So, we’re switching me up from the Doxycycline and Ciproflaxin to Minocycline, Tinidazole, and Rifamin. The switch will cause crazy digestive issues, etc, but it’s worth it if we can gain some ground. I’m exhausted from all of the insurance calls, doctors visits, and trips to the pharmacy. I lay in bed each day willing my food to fly out of the fridge and come to me. So far, no luck. I’d never leave my safe cocoon of a bed if I could get away with it… Just gotta get through today.”

That’s what’s going on in a “Lyme flare-up”… Lots of infections waning and waxing as they decide to rear their ugly heads. It’s always changing. It’s simply easier (and less confusing) to say “Lyme”, rather than list off a bunch of bacteria and viruses with long names.

All this to say, there’s just a whole lot going on for your Lymies. They’ve become experts at rattling off a couple of dozen antibiotics (brand and generic). They know some of their insurance agents by name. They’re not just fighting one tough infection. They’re fighting a dozen!

Their bodies are working over-time, and they are paying attention to all that is happening. They are champs… They are champs who are fighting every day to still have a life. I don’t know how to say this in a way that isn’t corny… So I’m just going to commit. Let’s cheer them on!

If you’re interested in learning more about the bacterial co-infections, check out some of the following research:

  • This comprehensive chart will give you a quick look at some of the co-infections and what they do.
  • This website (though poorly designed) is the best synopsis for each co-infection out there. Note that the co-infections with multiple strains have a link to their own page.
  • This medical journal is a meaty, but interesting read on the most common co-infections.

As always, thank you for reading. Thank you for looking for ways to understand and support the chronically ill people in your lives. This will mean a lot to them. Even if they don’t know that you are searching to understand, they will feel it in their interactions with you. What a beautiful thing you are doing for them. What a beautiful thing you are doing for me. I said earlier that your Lymies are champs. They are, but so are you.

what it’s really like

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This is the “in bed all day, don’t bother wearing contacts or make-up (or brushing your teeth?), and your bed covered in medicine bottles” picture. Lyme is an invisible disease, so we look pretty normal when we see you. But this is the real picture.

My dear wonderful loved ones of Lymies, this is a complicated disease we’re dealing with. It’s hard for your Lymie to explain, and it’s difficult to understand from the waiting room.

There are many things that your Lymie probably wants to tell you, but may have difficulty explaining. I’d like to shed some light today on what it’s like to live with this disease (or at least what it’s like for me). I’m only going to give you the basics, but hopefully it’ll help start a conversation between you and your Lymie. I imagine that conversation going something like, “I’ve heard another Lymie say that she feels this way______… Is that your experience too?”

Let’s get started. Here are some of my initial thoughts about what life is like:

  1. It’s traumatic. Every day is full of pain and debilitating problems. Your body can be okay(ish) one moment and then the next you can’t walk. You may get lost while driving in your own neighborhood because your brain literally stops working. You may skip meals because it’s too painful to walk 10 ft to the fridge. You may sit in the dark most days because of migraines. You may only sleep 2 hours each night. You may throw up so much that you pull a muscle. Burning, stabbing, piercing, shooting pain. Diarrhea. Air hunger. Fatigue. Memory loss. This is daily stuff. This is the bare minimum. Seizures, heart problems, brain cysts, allergic reactions, surgeries are the very likely add-ons. It’s a lot to deal with. The bottom line is this: while you may get used to them being sick, they don’t get used to being sick. The trauma is new every day.
  2. You can’t keep up. All of the above craziness ensures you will forget things, have to “rain check” important plans, likely have to stop working, and will spend 95% of your life in bed or on the couch. You’ve never had so much free time, and yet you have the physical energy and emotional capacity for next to nothing.
  3. You grieve over the loss of life. It isn’t just the physical trauma, it’s all the things in your heart, all the people you miss… that leads to continual grieving. The grieving becomes less over time, and you may learn how to cope with it… But I think to some extent it is always there. It’s disappointing to miss weddings, birthdays, be in bed on vacation, put off your dreams. It is wearying, and there’s lots of crying throughout the years.
  4. It’s isolating. Being stuck in bed so much makes you an easy target for isolation. Many people feel alone. Many feel forgotten. Unless you’re able to really fight for relationships, and in return your friends decide to also fight for the relationship… Relationships will drift apart naturally to the point where there are few people left. It’s so sad. I’m of the opinion that the emotional, heart pain of being sick is worse than the physical pain.
  5. You look normal. Lyme fits into the category of being an “invisible disease.” There’s a lot going on that you can’t see. Most of the time, you only see your Lymie’s pain if they let you see their pain. I often wish I looked how I feel. It would make life a lot easier.
  6. It is tiresome having a disease that is not well-known. Lyme is still at its beginning with research, treatment, and up-to-date awareness. Even most doctors aren’t read-up on the recent information of how wide-spread and difficult to treat this disease is.  That basically means 3 things: 1) Your Lymie will have to scour medical journals and books to understand treatment options. They have to become experts and diligent with their care, because so few doctors even know what to do with a Lyme patient. 2) Your Lymie will constantly have to educate their own doctors and run the common risk of being told “it’s all in your head” or labeled as “simply looking for attention”.  3) Because it is such a confusing, little-known disease, it’s not easily understood by loved ones.  There’s no neat box to put “Lyme and co-infections” into. Basically, no one knows what to do with Lyme, and that’s tricky.
  7. It’s expensive. You can easily spend tens of thousands of dollars each year on doctor’s appointments, MRI’s, medicine, PICC lines, surgeries, and home health care. And that’s frustrating. It’s frustrating that in order to try to become slightly better, you and your family will sacrifice your savings and go into deep debt. It’s scary to spend that kind of money on something that may not help.
  8. You have to be your own advocate even when you have no “fight” left. You spend 1/2 of your energy keeping the hamster wheel of your medical journey going — fighting your insurance company, getting your doctor’s office to communicate with your insurance, staying on top of your pharmacy, and getting your home health care to communicate with your nurses. You have to pay close attention to your finances to make sure you weren’t over-charged. You have to be ever-mindful of the 5 different doses of meds and supplements you are taking each day (I’m estimating around 40 pills total). It’s a never-ending cycle where the sick person has to work tirelessly.
  9. The way you live is drastically different. When you are trying to plan your calendar, everything revolves around your doctors appointments, lab draws, therapy, infusions… You have to plan rest days into your week because you know the crash will come after doing errands the day before. You may leave a holiday party after 5 minutes because your body is crashing. You may drive all the way there just to turn around. You may not get out of bed all day except to crawl to the bathroom. Life is different. Life is SO different. When someone asks you, “What’s new?”… The response options are 1) to describe your current health stuff, or 2) to describe what happened to your “Grey’s Anatomy ‘friends'” that day.
  10. Sickness leaves you wide-open to fear and hopelessness. With all of the above things, life is constantly overwhelming. And it’s easy to come to conclusions that are hopeless, fearful, angry, cynical, etc. It’s difficult to think positively. It’s difficult to be cheerful when you feel like your life is a burning building where more and more things keep catching fire.
  11. You change. You inevitably become a different person. There is so much sorrow added to your life that you cannot help but change. Hopefully, you fight to be cheerful despite horrible circumstances. Hopefully you fight against bitterness. Hopefully you let your sorrow make you even more compassionate for others’ pain. But it is such a fight. It is such a fight to not let sickness define you. It is such a fight to learn how to live again. And through all of this good fighting… There is much added to you. Your character changes. What you think is important in life changes. You change.

That’s a snapshot of what it’s like. And not to be depressing, but that’s the extra light version. To fully explain what it’s like, we’d need a few hours and two boxes of tissues (one for me, one for you).

It’s just hard. It’s hard every day for your Lymie, which means, frankly, that your Lymie will be the most blessed, loved, comforted, understood:

  • By your continued presence in their lives.
  • By your grace for their sometimes (often) stinky attitudes.
  • By your reminders that they aren’t forgotten.
  • By your willingness to listen when they want to talk about the hard stuff.
  • By acknowledging that the little energy they can offer you is enough and appreciated.
  • By offering your help in whatever they may need.
  • By offering to pray for the areas in their life where they hurt.

Sickness drains a person in every way — physically, mentally, emotionally, spiritually, relationally, and financially (whew! Lots of ways). But their life can be considerably better simply by being known and loved right where they are, for who they are in that moment. That actually does so much for them.

They need to feel known. They need you to want to know what their life is like. They need their pain to be acknowledged, and they need your comfort.

I have this phrase rolling around in my head all the time, that I want to learn how to “be sick well”. My hope for you is that you learn how to “be WITH a sick person well”. That’s hard too. It takes a lot of patience, a lot of listening, a lot of grace on your part. But I promise, the end result is beautiful. I’ve experienced it! It spreads around compassion, love, and joy — enough for them and enough for you, too. There is such beauty in shoring each other up in our hard places.

Addendum: I do want to acknowledge that sick people don’t have the corner market on pain. Each person on earth experiences tremendous loss throughout their lifetimes, and we are all in need of the care I described above. As much as I encourage you to learn what it’s like to be a Lymie, I want to let you know that it is important to me to do the same for my loved ones. Share your own pain with the Lymie in your life. Chances are that they can relate in a small way (perhaps better than anyone else), and that they can extend the comfort and compassion you so need as well.

Let’s all be excellent at showing compassion. Let’s all be working at the things in life that really matter.

so your lymie went M.I.A…

IMG_1754My dear friends,

It’s been a while since my last post, and the reason can be summed up entirely in this picture.

We all laugh at silly memes like this, but there is a lot of truth in this for people who are chronically ill. I laugh at this photo not because it’s silly and ridiculous, but because it’s exactly how I feel much of the time.

And then there is a part of me that doesn’t laugh. It’s frustrating how true it is. Many of the sick people I know, including myself, fight against the guilt of how many things we “ought” to be doing, or “ought” to have done, people we feel like we’ve let down, and people we feel we are letting down in this very moment. And yet all the “fight” we can muster is to breathe and maybe blink…

When your Lymie loved one goes “dark” (my term for going “M.I.A.”) for a while, rest assured that it’s frustrating, it’s necessary, and it’s disappointing to them. I want to plead with you not to take your Lymie loved one’s radio silence as a statement about you. It is merely a statement that they are fighting with everything they’ve got to get through a debilitating wave of symptoms.They are trying so hard just to make it through the day, that even very important, dear plans fall away.

For my part, I so badly want the people in my life to know that I love them even when I’m not around. I try my best to communicate that love… But I know that I’ve not always communicated clearly, and that loved ones haven’t always felt “in the know”. I am always wanting to do better. I’m always wanting to learn how to communicate in the most helpful way. BUT, it takes practice for me, and it will take practice for your Lymie loved one as well.

Can I just say… I know it’s deeply hard for both the sick person and for the loved ones—so hard for both that it’s even difficult to express in words. The person with the illness has the responsibility of learning to be cheerful in the midst of great disappointment, learning to “fight” to get better when they have no energy left, and learning to communicate with you about an unfolding life that is foreign to them. Your role—should you choose to “lean in” to being in this with them—is to learn to be unrelenting in patience and forgiveness, to be compassionate to the point of bringing happy tears to their eyes, and when you don’t see your Lymie loved one for a while, or if they take a while to get back to you, to simply assume that they love you dearly, but are focused on breathing and blinking right now.

Typing these words is hard for me. When I intentionally spend so much time being cheerful (because it’s who I am), it is hard to be more serious about the pain and sorrow of it all… particularly the emotional pain and disappointment of misunderstanding and “space” between loved ones. I always want to end on a happy note, but a sobering ending feels more appropriate today. I hope you feel the affection I feel for you, and the compassion that I have knowing the depth of sorrow that you feel in this limbo time.

May we all grow in understanding, compassion, patience, and love. Disease is sobering, but it can also be a tool to bring great depth and richness to relationships. May you find that to be true of yours.

Blessings to your Lymies and to you, their loved ones.

“in sickness and in health”: marriage and chronic illness

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When Kevin and I met in June of 2010, I had only been symptomatic for a few weeks. He has never known me as a healthy person. He has witnessed me growing more and more sick, and he has been with me every step of the way.

At first, he attentively listened and encouraged me as I recounted my stories of doctors visits and medical decisions. Then, I started including him in my doctors visits, where he would take notes for me and help me remember to ask the questions I wanted answers to. Then, he became my sounding board, and we started making medical decisions together. Even as an engaged couple, he helped me pay for my medicine and doctor’s bills.

Kevin knew what he was getting into when he vowed to care for me in sickness and in health. It wasn’t just a possibility that he would someday care for me in sickness, it was his present reality. It was his future.

We’ve been married now a little over two years, and while we are still kiddos compared to the many wonderful, married champs around us… I know that our marriage is very rich. We’ve practiced this vow every day of our marriage, and it has made us tender-hearted towards each other.

Today I want to talk about some of the things that have made our marriage rich, as we’ve both learned to live out this vow. But before I get into specific tips, I want you to know the point of view I’m starting with — I believe the best starting place for marriage when you’re chronically ill is the attitude / posture that your spouse is your hero.

There aren’t really words to describe the trauma of being sick day after day. There isn’t an adjective strong enough for how awful sickness is. It robs you of life. Awful, awful, awful. You can’t escape it. You’re stuck with it. BUT REMEMBER, your spouse willingly takes it on. This is why they are heroes. They choose to bear the load of finances. They stroke your head and massage your arms when you’re crying in pain. They develop sign language and looks to read your every need. They jump to get you water and pills when you wince. They leave the party early every time with you. They use their vacation time for doctor’s appointments, surgeries, and ER visits. They don’t have this illness, but they say “yes” to living with the trauma of it too. They are the person that runs into the burning building on purpose. It’s amazing. They are amazing.

Starting each day remembering all of your spouse’s “amazingness” creates an atmosphere of gratitude, generosity, love, and mushiness. Kevin and I are the mushiest of them all. But seriously, one of the things that makes Kevin and my marriage very sweet is that because I am constantly noticing the way he cares for me, I respond with gratitude and by serving him back.

Now that we have our super awesome, grateful marriage foundation, we can build on that with my 10 practical “in sickness and in health” marriage tips:

  1. Include your spouse in medical decisions. Personally, I’m a fan of making all medical decisions together. Kevin likes to defer to me, as it is my body… But I always want to listen to him and make a decision together. I value his thoughts just as much as my own. The decision greatly affects him too. I want to feel like we’re a team on this—that’s what marriage is supposed to be like anyway!
  2. Include your spouse in your medical appointments. I like to ask Kevin which appointments he wants to go to, and then make it work for his schedule. He’s not always able to go, but he appreciates that I want him there. I always send him a calendar notification, so that he knows when they’re coming up. It helps us both to feel like we’re on the same page—that he is included, and that I’m not alone in this.
  3. Let your spouse help you with things that stress you. Kevin’s favorite thing is when I ask him to call a medical company that is giving me a hard time. He loves stepping in to protect me. We both end up happy. When you’re sick, stress is like poison. Handing off things to your spouse (if they are able to take it on) helps you feel less crazy, and it helps them feel like they are involved. It’s deeply satisfying for both people.
  4. Expand your support system beyond your spouse. If you and your spouse alone are bearing the weight of your disease, you both will be crushed. It’s asking for trouble. There’s no way that your spouse can be your emotional and physical support at all times, and if they try… They will be run ragged. It’s a quick recipe for disappointment, failure, and frankly bitterness. Kevin and I check in regularly reminding each other to meet with people who refresh us and that we can be our real, raw selves with. This also ensures that when we need help, we have lots of people to call!
  5. Maintain your compassion for the tough stuff they are going through. When work is hard, when they have a cold… They need you to listen, be interested, and care for what is difficult for them. Maintaining your compassion is you practicing the “in sickness” vow too. It’s us caring for them in every circumstance. Remembering this makes your spouse feel special and heard, which in turn makes them love you more, which makes you love them more (you get it—lots of mushy love and affection).
  6. Communicate regularly that just because your health is poor doesn’t mean you want your spouse to stop sharing their feelings when they are hurt or angry. It’s so easy when your spouse loves you dearly for them to put their own feelings “on the back-burner” when your life is tough. It’s up to you to keep validating that their feelings and opinions are always important to you. It will be tough at first for your spouse to bring up certain topics when you’re in pain, but it will be so good for your marriage if you keep working through stuff even when it’s hard. It’s logical, right? — that any relationship where one person bottles down their feelings over and over again isn’t healthy. Yes, this is what you’re fighting against. PS: there are definitely times when Kevin and I do stop a conversation until I’m feeling a bit better, but we always make sure to come back to our paused conversations!
  7. Look for ways to serve them back for all of the wonderful ways they are caring for you. Kevin never expects me to, but I like to make our dinner and do some chores each day (well, when I can…). I know I don’t have to. I know that more than anything he wants me to relax and have fun… But I like serving him. I like making his life easier. He cares for me in so many ways, and I want to care for him back. He knows how much it “costs” me physically, and he’s over-the-moon thankful for it. AND it starts our serving / gratitude cycle all over again. What fun!
  8. Remember that you vowed to care for your spouse when they are healthy, not just when they are sick. It can be tempting to minimize caring for your spouse “in health” as less important than caring for them “in sickness”, but your vow went I promise… to care for you in sickness AND in health. Your spouse will be caring for you extra because of your sickness, sure… But don’t let it stop you from being generous in caring for them as they are healthy. Your care for them will look different. You won’t be able to care for them with as many physical actions (doing errands, yard work, cooking, etc), but you can still care for them by listening attentively when they speak, taking the time to ask questions and learn details about their work, friendships, etc. You can defer to them on date night by going to the restaurant they want to go to, or simply by watching the TV show that they love and you only tolerate. The more generous you both are to each other, the more joyful your marriage will be.
  9. Remember that while your spouse acts as your care-taker, their first role is to be your spouse. This health-journey, though it feels consuming, is only one part of your lives. Your marriage relationship is more important (and satisfying) than your care-taker relationship. Don’t forget what marriage is actually about — helping each other become the best version of yourselves, the person that you are meant to become.
  10. And finally… make time for fun with your spouse. In the midst of so many difficult moments, it can be easy to get stuck in all of the “goo”, but you need to have fun. You need to laugh. Go have dates! Invite friends over for a game night. Plan for a date immediately following a doctors appointment, so you have something to look forward to. Don’t let sickness consume your life. Go have fun!

This is just a start, dear friends. I’ve got lots of thoughts about marriage and sickness. It’s one of my favorite topics! The last two years have been the hardest years of my life (and Kevin’s too), but they have been the sweetest, richest, and most tender years. We’ve learned so much through necessity, and we have experienced great comfort in the midst of it.

My sweet hubby will soon be writing a post directly to your spouses, so stay tuned!

8 ways to bless your lymie loved one

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My dear friends,

Every time I sit down to write a post to you, I feel such affection for you! Loving and supporting a chronically ill person is heart-breaking and requires a lot of patience. Today, I want to talk with you about some of the ways you can bless your Lymie loved one. Are you ready?

  1. Try to understand what they’re up against. Lymie people need to know that you really care about this hard thing they’re going through. Lyme is devastating, and even if they’re handling it well… they need to feel known and understood. A possible question you could ask is, “What’s it like to be you?” You could also do your own reading on the subject of Lyme, as well as other materials related to supporting a person who is sick.
  2. Understand that “how are you” is a difficult question to answer. I used to get a “deer in the headlights” look when someone asked me how I was doing. I wasn’t sure if they really wanted to know or if it was just the standard greeting. The truth is that I’m almost always a mixture of emotions because my life can no longer be summed up in a ONE-word answer. I’ve found that I can answer, “Some things are really hard, and some things are really good”, and it still feels genuine and true. BUT it took me a while to figure out that I could say that. By all means, still ask your Lymie friend how they are doing, especially if you have time to talk about it. If you are just in passing, though, I’d suggest a different greeting… “It’s so nice to see you! It always makes my day!” is always a wonderful thing to hear.
  3. Say / send encouraging words. Just the words “I’ve been thinking about you!” can mean so much to someone who is hurting or feeling lonely. Lymies, like all people, have a basic need to feel known and loved. It’s hard to feel “known” when you’re sick, because it’s a part of you that no one else experiences… Therefore, many sick people feel lonely. Sending a “I can’t wait till I see you next” or “I was remembering that funny time we did…” can mean so much.supportive-friends.TIF
  4. Offer your help / support. Lymies need tons of help. They may fight it, but they do need it. Offering your help over and over is such a blessing. I’ve relied upon my friends for meals, rides, prayer, emotional support, etc… It has been one of the things that has kept me sane. I love feeling like I have tons of people who I can call, and even if they can’t help, I know they want to! I don’t have to beat my head against the wall to make my life work, because I have people in my corner. Your Lymie needs to know that you’re in their corner too.
  5. Be a “couch-buddy”. Lymies don’t just need help. They also need to be surrounded by friends. Often, they won’t have the energy to go anywhere, so offering to be a “couch-buddy” takes the pressure off of them. My Lymie mentor and I often have “couch-buddy” days. We have an understanding – I come over, and we talk if we feel like it, and if we don’t… we have a movie marathon. As a Lymie, having someone who is willing to sit on the couch with you and just hang out is the best!!!
  6. Include them in what you’re doing. Lymie people need to look forward to things, and they certainly want to be part of what is going on in your life. So, invite them to everything that you would if they were well. Birthday party? – Invite! Walk-a-thon? – Invite! Camping trip? – Invite! They may only have a 5% chance of being able to come, but they will feel thought of. They will feel included! And while you’re at it, make it as easy as possible for them to come. Offer to drive them, or if it’s a potluck, let them know that even if they’re too tired to make something, you’d still love them to come if they’re up for it… That their presence is the real gift. They will feel so loved and encouraged that you are thinking of them this way.
  7. Forgive them / Have grace for them. Let me be frank… your Lymie loved one is going to bumble around and be awkward as they’re getting used to being sick. They’re going to forget important things. They’re going to have bad days. Understand that when things go awry, it’s not a statement about how they feel about you. It’s a statement that their life is turned upside down. They need to know you’re a safe person, that they can bumble around and you will still love them. They need forgiveness for their mistakes, and they need grace as they learn how to “be sick well”. If you can do this, you will have the best kind of relationship – one of unconditional love and gratitude.
  8. Get ready for the long haul. Many, if not most, Late-stage Lyme patients do not get “ahead” of the disease. That means that it’s likely they will keep getting sicker… for years or decades. I know this sounds depressing, but I’m trying to be a straight-shooter with you… This is a likely picture. My dear friends, your Lymie loved one is most likely scared that you will grow tired of being kind, understanding, or helpful as the years go by. As much as you can, make it your goal to communicate that you are in this with them… that you will be in the trenches with them. And then do it! It will be hard, but it will make your life and your Lymie’s life so much richer. There is such beauty in a relationship where you stick together in the good and bad. This is one of the ways that we get to be like Jesus… by proving to our hurting Lymie loved ones, “I will never leave you, nor forsake you.”

I hope this gives you some ideas of how to be with your Lymie loved one. We’re all learning together. Feel free to comment below with your favorite ways of serving your Lymie!

books to read / things to watch

My dear friends, I have just a few resources in mind that might be helpful for you in your Lyme journey. I tend to be overwhelmed if I have too many resources to read. I hope that narrowing it down to my favorites can be a help to you. Everything you need to know about Lyme DiseaseReady?

Everything You Need to Know About Lyme Disease and Other Tick-Borne Disorders — Quite the title, huh? As you might guess, this book is meant to be a resource for everything you need to know about Lyme. It covers the history of Lyme Disease, the infections that ticks spread, the signs and symptoms of Lyme, how to get diagnosed, treatment options, and how to protect yourself and your family.Healing Lyme

Healing Lyme: Natural Healing and Prevention of Lyme Borreliosis and its Coinfections — Another lengthy title… but a great book. Stephen Harrod Buhner suggests powerful herbal supplements and medicines that can be used in combination with antibiotics or alone as a possible treatment option.

Under Our Skin Lyme Disease

Under Our Skin — This is a documentary that has been incredibly useful in spreading Lyme awareness. It specifically highlights where the medical and scientific community has been lacking in research and diagnosis. This documentary is free online and has a sequel that you can buy on DVD.

Fight Back with Joy — After reading those books and watching that documentary, you might need an emotional stabilizer. Margaret Feinberg wrote this book after receiving a cancer diagnosis, and it chronicles her Fight Back with Joy Lyme Diseasetime in treatment. It’s not a book about cancer. It’s a book about learning to fight, learning to rest, accepting and asking for help, and finding ways to insert joy. Truth moment – I was already crying about 5 pages in because the things she started to describe were all too familiar. I loved the book.

I hope these can be good resources for you!

the spoon theory

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Dear Lymie friends and loved ones,

This one is for both of you! There is a growing number of people who call themselves “Spoonies”. The “membership fee” is steep — you must have an invisible disease. Lyme Disease and the accompanying co-infections make Lymies perfect candidates.

The “Spoon Theory” originated from Christine Miserandino (a Lupus patient), who used spoons as a metaphor to explain what it’s like to live with an invisible disease.  It has become so popular that many chronically ill people now call themselves “Spoonies” and ask their loved ones to read the story as a tool to help them communicate. Cool, huh?

You can read “The Spoon Theory” on her website, or watch her read it here.

I hope this will be helpful to you!

so your loved one has lyme disease…

I first want to say to you that I’m so sorry. Watching a loved one go through this disease is heart-breaking and challenging. You may feel helpless. You may have questions that can’t be answered. You may be bearing the financial and physical burden of helping them. It’s tough. It’s so tough — physically, emotionally, mentally, and spiritually.

I will have many things to say to you, dear friends, throughout the course of this blog, but I want to begin with some basic things that my loved ones have done for me from the beginning, that have made a hard situation much sweeter. I hope these will be helpful for you to know / keep in mind.

  1. Learn what you can about Lyme Disease… I would go about this a few ways. First, I would ask your Lymie loved one. Ask them open-ended questions that let them explain what they want to explain, including how they personally feel about what their life is becoming. Asking technical questions to understand the disease are helpful, but it’s also helpful for you to hear their version of what they experience. Next, read some books! A great, comprehensive book to look into is “Everything You Need to Know about Lyme Disease“. There is also a great documentary called “Under Our Skin” if you prefer film-style learning. And, of course, we’re in the Google age. You can find lots of stories and helpful info online, as well. Just don’t believe everything you read on the Internet
  2. Know that your Lymie loved one needs “the benefit of the doubt”… Lyme Disease is an invisible disease, which means your loved one may look fine, but will often be going through major trauma physically and mentally (Lyme wreaks havoc on your brain and leads to awkward, confusing situations). If they seem distant, if they don’t know how to communicate about what they are IMG_1747going through, if they go though periods of grief or depression…. your relationship may feel strained. It can feel like a personal reflection of you. But it’s not. They’re just having a tough time; they’ve never been sick before. They don’t know how to “be sick well”. Where you can, (and I know this is hard) work to give them the benefit of the doubt — that they love you even when they are not quite acting themselves. It’s not a reflection of how they feel about you; it’s a reflection of the trauma they are working through. The greatest gift you can give them is the grace not to “have it together” yet.
  3. Keep in mind that your Lymie loved one needs help, and look for ways to bless them!… They may not know how to ask for help or even know what is helpful… But they WILL need help. They may need a shoulder to cry on, a meal made for their family, a ride to the doctor’s office, etc. I have a lot of wonderful people in my life who have blessed my socks off by doing these kinds of things. They have many times offered to help me. I haven’t always known how they could help me, but I have kept a mental list, so that when I could use a helping hand, I can give them a call. I’ve been given countless rides to doctor’s offices, financial assistance, moral support, meals for months… And the very best part of all of this isn’t even the actual help… It’s the reminder that I’m loved and not alone in this. That’s what people need in life (regardless of whether or not they’re dealing with a disease). People need to feel loved and known, and my loving friends and family meeting my needs reminds me that I am not alone. Best thing ever.
  4. Make sure that your “help” is a gift, not an obligation… Your heart for your loved one is most certainly to support and love them, not to add any obligation to their life. However, presentation is everything. I am in a unique situation in that my church has had several other Lymie people before me. They have learned how to be great supports to sick people, and I have benefited greatly by it. Here’s an example of “good presentation”: a lovely friend of mine, Johanna, recently discovered a supplement through her doctor that has greatly relieved her pain and supports immune system health. As we were talking a few weeks ago, she began by telling me the story, and said something like this, “I just wanted to mention this to you, because it’s been so helpful to me. If you’re at all interested in hearing more or trying this supplement, I’d be happy to get you more information. If not, no worries at all.” She offered up her help to me as a gift, not an obligation. It gave me the freedom to decide, while still knowing that regardless of my decision… our relationship would be in exactly the same place. Awesome!

Okay, that’s it for the first post… But I want to talk to you more! I have such a tender spot for loved ones of Lymies. As always, please ask questions in the comments section, and I’ll be happy to respond directly to you.