Living with Chronic Illness: A look inside my heart and mind.

I feel moved to speak out for myself and my friends dealing with chronic illnesses. My life has changed so much, I was wondering if I could find the words to describe just how? I thought if I share what it’s like for me, I could be some encouragement not only to those of you who deal with daily chronic illness, but hopefully it will help you better understand and support someone in your life, someone you love, who is chronically ill.

First of all, I never imagined my life would become this. Who does? But it is not just me who has been blindsided by this. My husband, my kids, my parents, my friends--they never imagined it either. It's a big deal for everyone who loves me, not just me.

But let's start with the little things. 

The little things have changed, mainly because my activity level has completely changed. Like, showers are WAY down the priority list, replaced by things like dry shampoo and sponge baths. I literally cannot spare the energy many days to take a full shower and wash and dry my hair.

Getting dressed feels like climbing a mountain. My whole wardrobe has changed. I wear actual shoes maybe once per year. Cleaning out the refrigerator almost never ranks anymore! Gardening of any kind is out! Beach walks are out. So is swimming or any type of exercise--even Yoga! I used to LOVE exercising!

You may be thinking, why not have your kids or husband clean out your refrigerator? My husband and kids are incredible. They handle everything that I can't or don't handle. And they handle anything I ask them or need them to do. But some things, I've learned it doesn't help when they try to help. 

For example, I have five children still at home, so we have lots of laundry. I have spent many hours teaching my kids to do the laundry, but I've learned it still stresses me more to have them do it. I love doing laundry and I feel good when I do it. I love sorting the loads and folding the clothes. I love it that I haven't had a single stray sock in years (I am truly a laundry GEEK). I get stressed when they do it. They don't sort the same--close, but not the same. They don't care if all the socks came through, and they fold differently than me. Stress doesn't help my health. Therefore, I do better overall when I do the laundry. Now, if I need to, I can let it go and let them do it all. Or sometimes, I have them carry it, switch the loads from washer to dryer, or fold a load when I'm particularly tired. I've even sat on a stool and just played "overseer" as they sort.  But I keep the laundry and I keep more peace. 

If you're chronically ill, what's your "laundry?"  For my grandma, it was dishes. Anyone else doing dishes for her, I'm pretty sure it took a year off her life each time! I used to think I was being so helpful and loving when I demanded that she SIT DOWN and let me wash the dishes.  I dismissed her protests as just trying to be nice. I get it now. I have yelled apologies up to her in heaven many times.

So, if you see me doing laundry, or cooking, doing the grocery shopping with my little scooter, or cleaning my kitchen, or having a child help me clean out the refrigerator--don't yell at me for not taking care of myself. I can't begin to count how many times well-meaning friends and family have watched me do a chore and yell, "Make your kids do that! You need to take care of yourself!" I need you to please understand, when I choose to do a chore, it's choosing to take care of myself. To enjoy the things I enjoy, to be active, to be present, to preserve the peace in my home and in my  mind. Doing a few things I most enjoy makes me still feel somewhat like a valuable human. I do know how to delegate, and I do when I need to. But I"m not going to waste away in a recliner or in my bed if I can move. And most days--not all--I can at least move a little.

I hate saying "no." But I have had to learn to say no. I have to, I have to, I have to. And I can't worry if you don't understand. It's about surviving and getting done the things that NEED done. Not to mention that for me personally, I'm hooked to an IV 16 or more hours a day, and I also require around two hours of additional therapy each day. I choose my activities SO CAREFULLY and I can't worry what you think about why I do one thing and not another. Just have to let it go. Say no, let it go.

On that same note, I used to think I didn’t care what strangers thought of me. Now I can't care! We can’t explain our illness to everyone we come across. I’m not going to carry a big sign. Someone wrongly judging what they see when they observe me is 100% not my problem. I remember sitting in church one Sunday—and I always sit. I never waste energy just standing for no reason. And two older ladies were standing right behind me talking about all their aches and pains and pesky doctor visits and medications. One of them put a hand on my shoulder and said, “Don’t mind us dear. You don’t yet know what it’s like to be old and have your body start breaking down on you.”  I said, "Actually, I do."  They laughed—hahaha!! I laughed. And I let it go. But don’t get me wrong. I have flashed my port a time or two. It is hard always feel completely misjudged by people you don’t know, or don’t know well.

People care for me and want to help me, but often that means selling me their side hustle health shake or supplement, with the best intentions for the most part. I have to graciously decline and deflect all the unsolicited advice and suggestions that imply I’m only sick because I’ve never eaten properly or exercised right a day in my life. Some people have actually boldly implied I'm sick because I eat nothing but sugar, soda, and processed foods. Well-meaning folks assume I haven't considered ________ (you fill in the blank): smoothies, raw foods, a plant-based diet, cutting gluten or dairy, omega 3s, vitamin D, CBD, acupuncture, goldenseal, collagen, kombucha, fermented foods. Have you tried? Have you tried?! This worked for me? This worked for my friend!

It is hard to let go of the frustration I’m confronted with repeatedly of people seeming to assume I’ve never tried the right diet or supplement, consulted the right doctors, researched my symptoms, my disease, and my medications, tried everything, read anything, communicated with others who have exactly what I have. I do all those things! All the time. I manage my health decisions every minute of every day. Do people think I'm just sitting here wasting away in pitiful despair, never attempting to see a doctor or take care of myself?

Also, I really hate the question, "How are you feeling?" That question nearly implodes my brain.  I am never, ever, not for a minute, feeling well. I am not able to give you any answer that explains or does justice to to the truth--and if I could, I would not have the energy to do so. So I try to be truthful, yet simple. "How are you feeling?" I will almost always answer, "Okay for me." Sometimes I need to say "I'm struggling today," or, sometimes "I'm not well right now." You can ask me. I've learned how to answer. But also know you don't have to ask me. I will tell you if I need to--if it's relevant for the moment!

On second thought, don't ask me. I will tell you if I need to.

But let’s get a little more serious. My biggest battle is not the physical illness, it's the mental one. I feel 100% unlovable. Every minute of every day I have a battle in my mind over feeling worthless, broken, useless, ugly, deformed, disgusting, and completely unlovable. But despite all that, I still have to--WANT TO love those around me. I do love those around me. That's what keeps me going, the amazing people God has put in my life to LOVE. And seriously, y'all are amazing. But truly one of the hardest things for me is to have faith that anyone finds me lovable or worth anything at all. It's hard. I just can't put it any more plainly than that. I can't get over it. I deal with those thoughts every day.

The changes in my mental health have been huge: These days, I have chronic PTSD and anxiety attacks that are triggered by my body's physical memories of near-death trauma. I have developed a clinical depression that I need to treat. That is all new territory and I'm learning to accept it and manage it.

Chronic illness is hard on a marriage. I have to have faith in my husband that he loves me. And I do have faith in him--that's why I married him in the first place and what the vows are for. And he is nothing short of incredible (if you've met him you know!), but the emotional scars are complex and run deep. My personal mental battle makes for big complications. In addition, my attention to him has to take a back seat much of the time. In my home, I have five children who really do depend on me for everything. The housework needs done. Unfortunately, that means I need for the adult in my house to take care of himself. It requires complete determination on my part to give what I can give: care for his children well, care for his home well, and make sure I am present as much as possible for conversation and to be a listening ear. It is painful that our relationship can't be more. It is an immensely difficult trial for us both, and it affects us both deeply in completely different ways. We are not dealing with one deep wound for our relationship, but two--a different one for each of us. I consciously choose to cling to faith in my husband, and faith in Jesus to get us through this one more day. Hopefully as each day passes we will each get a little better at navigating these waters and begin to sail more smoothly.

Faith is everything to me. Facing death so many times--I just HAD TO KNOW. So I made desperate prayers to God for "complete faith." Dying is a reality for me every day. I HAD to know what comes beyond this life. And now for me, in a direct, personal answer to prayer, I do have unwavering faith in God and His perfection, love, mercy, and goodness. There are hard moments. No matter what, it is hard to understand why there is suffering if God is good. But it is understandable, if you just ask. And, as one who has teetered on the brink between this world and the next several times, I can tell you that in my moments of confusion or sadness or doubt, I know that I would rather die having faith in God even if it was to discover I was wrong and nothing comes next. Because that would be better than to have no faith and discover something actually DOES come next. I choose faith even in the moments when I do not understand. That is what makes it "faith."  But my God has let me know He is there. I feel His grace and strength in every breath and every heartbeat.

Let's talk about kids. My kids--being their mom is all-important. I have to fight discouragement because I can't be the mom I want to be. I feel tremendous discouragement  not being able to do all the things, all the lessons, all the field trips, walks, trips to the park, art projects, cooking, board games, and good conversations. I have to remember today is today and I am still here. Today, my kids have their mom here. Yes, my kids have to be more independent than other kids. Yes, they probably have more responsibilities than other kids. Yes, they participate in activities less than other kids. But I am their mom and I am here and nothing can replace the love I can offer them each day even if it is only a little.

I cry a lot. I experience a lot of pain just feeling worthless and broken. There are many moments things just feel too hard. I feel so sick and so exhausted, I don't know how I can take it another minute. So I cry. I have so much grief for things lost: feeling well or normal (I don’t remember what that’s like), trips--either short day trips or bigger vacations, being able to go out to eat or drink, lost or changed relationships, all the foods I can't eat, the loss of free time, loss of being able to just get up and GO somewhere on a moment's notice, the loss of my "normal" body to a disfigured one with tubes protruding. I will probably never be able to "work" again. Or even volunteer. It is all loss.

I have peace I can't explain to you, but you may notice it in me. Day by day I am given the grace I need to find joy, to keep going, to keep faith, to love, to try, to breathe.With great trial comes great fortitude. We can find it in ourselves to meet the hard moments, and we do.

Thank you to all who keep me in your thoughts and prayers, who help, and encourage, and empathize. Thank you to those of you who I know I can call when I need help. How could I possibly say I am not thoroughly blessed beyond measure?

Under Pressure

Two nights ago, the pain started again.

My life is defined by managing very serious health issues, and a few weeks ago I underwent a two-week period of such intense pain that I had moments where I was just ready to die to end the misery. But two different trips to the hospital enabled doctors to locate the problems and patch them up, and life resumed to "normal," which for me is 1) a paralyzed small intestine, thereby I live on IV nutrition and fluids through a port, and have a GJ tube to drain fluids and air that get trapped in there. 2) I have a primary immune deficiency (CVID) that requires monthly infusions of IVIG and causes chronic fatigue as my organs and systems struggle to function without the help of a immune system. 3) I have chronic rheumatoid arthritis that loves to keep me on my toes as to where and when it is going to flare and how badly.

I manage. I kinda even "cruise" a bit. After 10 years of this, I've learned to gage my energy and dole it out to get through my stay-at-home homeschooling mother days. But it is a constant burden and stressor that never lets up.

Those two weeks of pain I had just after Christmas were frightening. I grew weak and feverish. I lost 25 pounds. I thought maybe I could finally be dying. The pain was too bad to think or sleep or move. Fortunately, the doctors found the sources of the pain and were able to treat it.

But two nights ago, it returned.

NO! I told God. NO, NO, NO! I will NOT do this again. NO! You have to take this away now! I can't. I can NOT. NO! Do you hear me? NO!!!

I was in the bathroom where I had been attempting some of the 2-3 hours of physical therapy exercises I do each day to help my body function better, and letting my GJ tube vent.

I put a thick towel on the bathroom floor and through excruciating pain, lowered myself onto it and curled up into a fetal position.

No. Help. Oh  God. I can't. Why? This is too hard. Grandma Olga, pray for me. St. Bonaventure, pray for me. Mother Mary, pray for me. What is happening? Just no.

I laid there helpless. Broken. I couldn't formulate another thought or word. And then, a vision opened in my mind.

The Potter's wheel. I saw a piece of clay being formed by two strong hands, and it was very clear to me that the process involved a constant steady pressure. I understood that constant, steady pressure had been on me my whole life. Constant, perfect. Shaping, stretching, refining, perfecting. Our loving Father, from the day we are born, keeps a constant steady pressure on our lives to mold us, make us, shape us into what He has planned for us to be according to His perfect plan. If we are not walking in faith at any point in our lives, then we are confused and overwhelmed by this pressure. We can be overcome with anger, bitterness, grief, depression. Without faith, we don't see this pressure--our trials--for what it is. It is the process of creating, refining and perfecting. But if we know God, we can fully trust the pressures--the trials--that come our way. We can know by faith they are PERFECTLY applied for our own unique soul, and even though hard, we can manage to trust Jesus through it all. That is the sufficiency of His grace. The love of a Father bestowed on His children.

I watched the wheel spinning with the strong hands applying even, constant, delicate pressure. Then I saw one of those hands lift up and two fingers dug in deep in one particular spot. A beautiful shape instantly emerged on the outline of the vessel, but... OW!!!! That was the pain I knew I was feeling tonight. The Potter's fingers digging in one particular spot. Why? To take a beautiful vessel and turn it into something spectacular and unique. 

Okay. I see it. I get it. I waited in silence. Why?

The Potter's wheel vanished and my mind recalled a prayer I sent up last week. No. It wasn't a prayer. It was a full-blown tantrum, and it went something like this:

My Jesus, I want to SEE! I want some SPIRITUAL SIGHT! It's not fair! I know you say that those who believe without seeing are more blessed, but I don't care! All the great saints are called blessed and they had amazing visions and spiritual sight! Paul had it. John had it. Peter had it when you let him see Elijah and Moses at the Transfiguration. People all over the world get to see Mary, or the Holy Family, or Jesus. They get visions of your Heavenly realm and divine revelations of your perfect will. I WANT TO SEE. Something. Anything. Please? It's not FAIR! I do believe without seeing, but I still want to see SOMETHING.

How is that for an obnoxious prayer? That prayer came to mind in that moment after my vision of the Potter's wheel vanished. I saw myself in the car driving to my doctor's appointment, yelling that tantrum up to God.

And then I saw it all come together. The constant loving pressure my Potter has placed on me PERFECTLY since the moment I was born. More pressure here for a minute, then more over here. I noticed the pain that had sent me to the fetal position had vanished. The pressure point was gone. The purpose of it had been to answer my prayer for spiritual sight. That pressure point of pain in that particular moment--arriving not long after a hard battle with the same pain--it humbled me enough--broke me enough--for one moment so that God was able to let me see something I could have never seen clearly with my mind full of my own thoughts.

He is the Potter. I am the Clay.