A Day in the Life with an Elephant

I've heard and used the phrase often, "the elephant in the room". When there is a heavy topic no one is talking about, but it is there, weighing heavily, as present as the hand in front of your own face! No one wants to bring it up, but its presence can't be escaped from, and dodging an elephant in a small room is not only impossible, but probably smelly as well.

That's how I feel about my chronic conditions! Not only an elephant in the room, but a monkey on my back! Sometimes a bird in my hair and a whole zoo up in my business! It's unavoidable. A fairly private person, I don't like to draw attention to what is necessarily going on over here in Jamitown, it is a difficult task to try to live a "quiet, normal life" when carrying around the elephant of chronic illness right there on your back. Today I just want to share what it's like to feel the burden of that elephant. At least a smidgen of that elephant. Maybe just a tusk.

It's not like wearing a cast on your arm or leg or a bandage on your head, which garners attention, but then quickly fades. It's a constant presence in my life which dictates from every aspect-what I can eat, what I can drink, where I can go, how long I can sit, is it a long drive, how far are the bathrooms from my seat, are the seats comfortable, will there be items I can eat or do I need to sneak in my own food, will I dehydrate because I'm trying not to drink so I'm not in the bathroom every few minutes-disrupting everyone around me, will I have pain and have to leave suddenly,will there be flashing lights that could cause a seizure episode,how much walking is involved, are there close places to park,will I be able to take all my medications on time,and on and on.

It's beyond difficult to be "incognito" with an illness that robs you of your privacy and freedom. This creates a life where I often opt to stay home, avoiding many social situations where my illness may cause attention, or will make me more uncomfortable, and neither is worth it, to be honest. And in all of that is the whole "letting others down" element. Being a wife and a mom is at the top of my list, and they have had to rotate around me several times because I am not able to go, stay, participate, or conform. Letting people down is beyond awful for me.

I am a person who dislikes telling people I can't eat or drink this or that. I've always been very polite about being flexible when going to someone's home, but now my condition warrants very strict dietary needs. I no longer have the freedom to go to someone's home for dinner or even coffee and snacks unless they understand just how bland and boring my dietary restrictions are and don't mind meeting them. But see, I don't like having to make people bend these ridiculous but necessary standards, so I just don't offer or put myself in situations where  socializing can happen. I'm tired of my condition ruling my life, but I don't have a choice. Going to receptions or other parties can be a nightmare, just like public restrooms, and I'll spare you those details. Let's just say I'm always happy to be home, where yoga pants and my own restroom awaits.

How all of these thoughts came together was the fact that I can no longer be as selfless as I want to be in my giving. I no longer have the freedom to drop everything and go help someone unload a truckload of something. My body cannot handle the strain of carrying weight, or putting pressure on my core area any longer. Standing for too long, raking, working outside in general, even my own housekeeping is a huge challenge. I work in 5 minute increments and I do many things from my stool. On a "good" day, I work longer on my feet, but pay for it the next.

The problem is, on the outside, I look completely fine. I look capable. Some even think I look "fit". To this, I laugh inside, as I am no longer able to complete my fitness goals. No biking, no walking longer than my driveway, no cardio, nothing that jostles the bladder. Stretching and arm weights. That's about it. It's not easy to complete a fitness goal with those restrictions. I had fitness goals, people! Just like some of you! It's not easy to clean a house. it's not easy to do a lot of things, but not being able to help others, and constantly having to talk about my condition, giving it all the attention has been the worst. You think you're tired of hearing about it? Guess who's tired of talking about it?

I don't want this to be my constant companion, but when my well-being depends on every aspect of my life being as healthy as possible, I have no choice. I have to be constantly aware of everything I'm doing, eating, and drinking, and every choice I'm making. These past few years of adapting to this new life and grieving my old carefree life has taught me that I took those years for granted. Think about what you are taking for granted today. The things you don't do that you can, and the things you're doing that you should not. And I don't say that to be preachy and all finger-pointy (yes, it's a word now), but maybe you're doing things that are adverse to your health and it will catch up at some point. Or maybe not, I've seen that too! I should have heeded the warning of the wise old woman who told me in the 80's to stay out of the tanning beds. I went in the 80's, and I regret every minute!

I don't know why this condition happened to me. I wish I could blame something, but I did not bring this on myself through any bad life habits or choices. This just happened one day out of the blue, the same way my seizure disorder started. And now I'm being told I may also have a third condition, but I'm not speaking it into existence at this time. People with IC (Interstitial Cystitis) often have more than one other auto-immune disorder and no one knows how to link them together.

My life is lived for survival at the moment, though I've struggled to not feel selfish, as I can't help people, like my own mother, who has been struggling for the last two years. She has had to hire a lot of help. All of those thoughts have done nothing but add to the stress, which exacerbates this condition! I want to shut myself off and forget I have this. I want to eat what I want like regular people. I want to be able to use my body the way God intended. And I'm really tired of Pelvic floor therapy. It's brutal. It's a trip to hell and back! It's invasive, it's intrusive, it's an invasion, and it's painful. And who doesn't hate that pain scale? You want a number this week? Okay. 7,6,3,8...it hurts every day! I'm used to pain now. It doesn't get a number! Sure, I joke throughout the procedure and my therapist is wonderful, but it's not funny. Not one minute of it is funny.

And all of it is invisible. Even on my face. My smiling face. My happy, funny Facebook posts. It's lonely. Because no one gets it. It's scary. It's never-ending. It's consuming. It's life-changing. And yet, it's bigger than the elephant in the room. It's meticulously hidden, and yet constantly forced out for all to see. Just ask me out for coffee. Or for a walk. Or to a movie. Or to help you rake. Or join a Zumba class. Or come for dinner. Have a conversation about chocolate even. Or any "normal" thing you'd ask a friend. And the answer will be....I'm sorry, no. I hate those reminders. Some days I wake up in a good mood, and then I remember this challenge, and I think, Oh crap, I forgot I have IC.

And yes, I appreciate my life, and I have joy. But I also need this. A letting go of how this affects my giving and my soul. It can become a penetrating idol, a soul-sucking mind trap. I can't describe it any better. If you've ever been in pain every single day for a year, you would know it is very hard to forget it for a day. It is very difficult to be joyful in those circumstances as we are told to be. And yet, as I share my experience, I also share this verse, because I know who walks this with me daily:

"Humble yourselves, therefore, under God's mighty hand, that He may lift you up in due time"

1 Peter 5:6

Be kind and gentle in other people's lives always. Don't think you know what a person is going through. And if you're curious, ask them! People with chronic and long-term illness are not complaining. Our lives have been forever altered. It's not a temporary thing! You have no idea what kind of elephants that person is carrying, even if it looks like their life is all rainbows and sunshine on the outside. (and I've been told mine does. Don't be fooled by Facebook, friends) And always be thankful if you don't have elephants or if yours are lighter right now. Life can change in just one day.
Blessings.

 

You Know Me, Daughter

Some of you opened my last blog post and read it, possibly wondering why I would share such negativity. But I really hope you got more out of it than that. In reading later comments, I was relieved that you did! When I share the ups and downs of chronic illness and all the surprises it brings, I do it for a purpose. When I talk about this roller coaster, it exposes the humanness of what it means to be in the flesh, and also to believe in God. It reveals what it is like to have faith, but also be building deeper faith through trials at the same time. It is about perseverance and the times he human body and human spirit sometimes go to battle for who's in charge. Spoiler alert: neither one is in charge! It's a real tug-of-war when I find myself losing my peace. True peace only comes from trusting God, and yes, I know this, I pray this, I encourage this in others, and yet, the battle sometimes comes. You ask, "If you know that, how can you ever let go of that? Your faith must not be that strong." Well, welcome to this real Christian, still fighting her own battles sometimes, still learning how to let go. I no longer apologize for not being where others are in their faith. I can only be where I am, and where God wants me to be is where I will go.

I believe God is using me for a reason, which is why my healing hasn't come just yet! (See, I told you I'd get back to that whole healing thing eventually) Even in the midst of turmoil, I still know God is using everything I'm going through for a purpose. It's hard to explain when the emotions are high, but strangely, I feel a calming in my spirit no matter what may be going on in my body. This is my message. This is my peace, though the outward self is hurting, my inner self still feels everything will be okay. This is God at work in me.  I feel it is important to share some of the challenging emotions  I experience sometimes, because I want to connect with people. I know I'm not alone, but more importantly, I want others to know they are not alone. We are all connected somehow, sometimes through joy and sometimes through pain. Sharing our stories is how we forge bonds and become a family for others in which to relate. I am part of several online support groups for my condition. I don't need to post or interact much, but just knowing there are others in my situation makes me feel less alone. Misery loves company? Yes, it does. Misery needs and deserves company. Their very existence depends upon this in some cases.

The people I share my most wrenching thoughts with know my heart. They know even when I say something the context in which to hear it, because they trust and know me. I believe that is how God hears us too. He hears me when I'm frustrated and hurt and seemingly at the end of my rope, and He whispers, "daughter, you know me and you trust me", and my spirit calms immediately. This is what it's like to spiritually connect with God and with people. I am fortunate to hear from God and to hear from a couple of people who try hard to understand and minister to me. It really does matter that we care about people. Broken people and well people alike. Not just people you like and go to church with, but people who need what you have and claim you want to give to others.

God is in control of this, and there is a purpose for this pain. Those are two things I say regularly about my life. You won't hear me ever sugarcoat anything for anyone's benefit! I say that with a big sassy smile. God's hand is on me. I know this, because it hasn't gotten any easier. But what it has shown me is that I have become stronger than I ever thought I could be. I've been able to let go of things and people that I didn't think I could live without and I'm okay! I know what is important in life now and I don't take things for granted. I appreciate any moment I am pain-free. I am hyper aware of my blessings. I appreciate people who care about me so much more and I tell them so. On the flip side, it is easier for me to tell people I don't need any more stress from them and to please go quietly. Either stay in my life all the way or go out all the way! There's that sass again. And when that quiet calming comes in the midst of my storm, I hear the words I need to hear most of all. Even when it seems like I am not listening, even when the words coming out of my mouth don't seem to make sense to the humans around me.... 

"Rest in Me. Pray continually. Trust and see that I am good. Let Me direct your steps.Let Me carry your load. Put your hope in Me.Fix your eyes on Me. You know Me, daughter.Keep My peace."

Blessings and thanks for reading.

Blessings by Airmail

I was pretty discouraged one weekend as my husband and I were out doing some errands. I'm not quite sure what started the whole downturn of my thoughts, but one thought led to another and soon I was saying that thing I hate to say. I don't like to really admit the truth of what I feel to the average audience, to be honest, because some of you can be pretty judgmental. Those of you who haven't walked in another's shoes, in particular. Those of you who can't stop thinking of yourself for one moment in order to think of what another person might be going through. Those of you who aren't really all that kind, though some of you think you are. "You" may not be one of my readers, but maybe you are. I have some pretty harsh critics where  it may surprise you, and maybe you do too. It's tough enough to struggle in this world, isn't it? And then the people who are supposed to hold you up are either absent or pushing you down, or making fun of or light of your very painful, serious situation.

Those are just some of the things that were adding to my pain that day. And so I took the bait, convinced my life was nothing but a failure. My future was bleak, and my joy was being stolen from me everywhere I turned.  People were turning on me left and right, it was just one thing after another, and I did say it again. This is what happens when I lose my hope, and I'm telling you, this is worse than any physical pain I go through. I feel like God has deserted me over and over. I wonder why I have any faith at all. I ask Him why on earth do I bother doing anything right if all He does is take everything good from me? Yep, it gets THAT low and lower. I don't want to and I can't do this anymore. My life is simply surviving. Where is my joy?

And my husband just listens. Hands tight on the wheel as I say that thing he hates to hear, because I know he fears one day I will mean it all. He reminds me that God won't give up on me and neither will he.  People say I'm strong, I'm a warrior, but you don't get to be any of those things without being beaten down a few times first, believe me. You don't get strong by simply withstanding a two year pain-filled, infection-ridden flare, peppered with migraines, more "try this" , "try that", and failures upon failures almost daily at times. There are some not-so-pretty days in between the making of a so-called "warrior". There is a lot of quitting and restarting. Falling and getting back up. Anyone who tells you any different has it too easy or has been told not to be emotional about life. I'm still in the grieving process of wanting my old life back. Every now and then I really miss the old me. I think it's okay to feel that, but I still want to be at peace with the new me too. Find me a warrior who doesn't have a sketchy or sad story within them. Find me a superhero who doesn't miss his face without the mask. Go ahead.

Now, to back up a few days,I happened to be scrolling through my blog to see if comments had been posted because they stopped posting to my email account. In doing so, I discovered at the beginning of June, my blog friend Norm, had posted that he had published a book with some of my comments in the book. He wanted to send me a copy of his book! I was thrilled, as I enjoy and respect his writing, so what an honor to be included! I felt terrible that I didn't check this sooner! The day before we left to go up north for the fourth of July, the book arrived. AIR MAIL. That's how fast it arrived from our friendly neighbor, Canada. He sent it Air Mail! How did he know how much I needed this book?  I opened it up, and quickly turned to read the back of the book. That's when my attitude changed. That's when I remembered just how God speaks to us and uses other people. I barely got through reading the back out loud to my family, who was sitting in the living room when I opened it.

This is the description of the book:
"we can wrongly believe God has abandoned us to the cruelties of life and that our Heavenly Father no longer hears us when we pray. This may cause us to feel like our world has turned upside down and we are walking on the ceiling, because every aspect of life feels like a drudgery and there is no end to it.This is so far from the truth because God does love us so much.However, when we are in the middle of this heart-wrenching existence, it takes the Holy Spirit to penetrate our heart and mind in order to break through and reach deep within us so we can be healed of the deception we have come to believe is our lot in life.
This book will help individuals make the hard changes it will take to overcome the lie that God has left us for dead. On the contrary,everything God does is to give us life and draw us closer to Himself,but we have to want it."

I do want it. I just forget I need it too. I read my own quoted parts in the book and remembered the determined girl who wrote those words. I saw the artwork from Norm's brother, that he so graciously shared with me, and I remembered the story behind it, and how it had inspired me to reach out to my own wayward brother. God gives us life, but he also gives us encouragement through some amazing people. Strangers at that! I thank God for that timely arrival of Norm's book and his truth and wisdom within it,  for it rekindled my fighting spirit, and stopped the taking of the nasty bait I almost swallowed as truth.

I know something about warriors and fighters. Someone or something is always trying to take them down. It's usually because there is something powerful within them that the enemy doesn't want them to share. This warrior will remember her gift from now on. Apparently there is something in me that needs to continue and  be developed further. I have asked Him to help me trust Him more even as things look bleak and don't go the way I want them to. I have asked for peace most of all to just be able to accept that my life isn't going to be all I thought it would be, and to be okay with the abilities and people I have left. I just reread what I wrote and I do find it odd that I didn't ask to be healed....I think I'm going to leave that statement right there. That's very interesting and revealing. More on that later. Blessings to you and thanks for reading.