Further Down The Road

Hello to my invisible and chronic illness community, it has been a long time since my last blog post. It seems that there are fewer needs for words when suffering eases up. There is something about deep physical and emotional suffering that brings forth an outpouring of the agony of a soul, to be spilled upon the page.

My greatest inspirations for writing in my blog have always come from a deep place of suffering, and from that place a longing to be heard and to help others, as well as seek a higher purpose and find a calling in my words. It seems that this fact in and of itself shines a great light on the purpose of pain, and the reason for “senseless” trials and tribulations in this life. I know I’ve touched on the subject before, but how often do we relate to the story of another who has walked in our shoes and suffered the same as we have, in a way we could never relate to the kind words and comfort of someone who has no idea what we are experiencing? We are touched by those who overcome and find peace and joy not when suffering ends, but in the midst of it and despite of it.

This week I finished a short five day devotional called Finding God Faithful. It focused on the story of Joseph; we know the story so well, I feel to the point of not actually experiencing it anymore. Much like the mindlessness of repeating a memorized verse or song, that has lost any spark of meaning due to it’s familiarity. And yet, I found a new message in the story of Joseph that I feel relates specifically to not only God’s relentless and unending faithfulness to us, but how we experience Him in trials and suffering.

Part of the verse that was emphasized in this short devotional (that was repeated in several places) was “God was with Joseph”.

So simple, and yet so profound. Because did God initially show up and rescue Joseph from the pit or being sold into slavery? Did God for many many years rescue Joseph from prison or change his circumstance? No he didn’t, at least not for a long time. So where was Joseph’s comfort? How was God with Joseph this whole time? And on the flipside, how was Joseph unwavering in his faith? It certainly was not in seeing God change his circumstances, or end his suffering. The answer is in abiding in him, and holding fast not onto how God would work, but onto the person and character of God himself and having unshakable faith in a faithful and unchanging God.

It is easy to think we have faith in God when in fact without always realizing it, often we fall into having faith in how we want Him to work, what we think He will do, how we believe He will make us feel, how He will change someone….

When our faith is placed in the “what, when, where and how”, this is where we are sometimes disappointed, and our faith is shaken.

When our faith however truly rests in the “Who”, we shall never be disappointed; for our focus is on the unchanging character and nature of God and His promises to us, that are not always about our comfort, but about our good and His glory.

“”Can a woman forget her nursing child And have no compassion on the son of her womb? Even these may forget, but I will not forget you. “Behold, I have inscribed you on the palms of My hands; Your walls are continually before Me.”

Isaiah 49:15-16

“and He who searches the hearts knows what the mind of the Spirit is, because He intercedes for the saints according to the will of God. And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose.”

Romans 8:27-28

“My sheep hear My voice, and I know them, and they follow Me; and I give eternal life to them, and they will never perish; and no one will snatch them out of My hand. My Father, who has given them to Me, is greater than all; and no one is able to snatch them out of the Father’s hand.”

John 10:27-29

(Also see the entire chapter Psalm 139).

To those with chronic illness that betrays them on a daily basis in their physical bodies and even in their minds and emotions; I know the agony of hopelessness, I know the pain and despair of seeing no end to suffering. Some of us will get well. Some of us will receive partial healing. Some of us will see the path of suffering go on to the horizon with no end in sight. We do not always know the answers, sometimes God is gracious to show us the reasons in this life, like he did to Joseph. And for some of us the answers may not come. It is here that our faith rests that God is relentlessly intentional to us, and the promise we rest on is that everything works together for our good and his glory. Disappointment comes when that good and glory doesn’t look the way we think it will look or want it to look.

I am in a season where so much has changed for the better, yes there are still struggles with chronic symptoms including unexplainable fatigue that hits me from time to time, seasons of brain fog, the relentlessness of inflammation and autoimmune reactivity…. But I am grateful that the last couple years has brought me to a place of peace with where I am in my life and with the Lord.

I am in another season of a faith journey which is stretching me, but which I face with equal appreciation as I do struggle.

The reason being is that there is a very sweet spot that you find with the Lord and a reliance on him during times that your faith is being stretched, that you cannot experience in any other way. Right now I find myself in a beautiful place of abiding, in a place of praying without ceasing; which is less about actual prayer than it is a constant commune with the Lord and an acknowledgment of Him in every thought I think, everything I do, in every waking moment of the day where He is my director, my comforter, my shield, my guide, my peace.

In the past I have given over more years than I can count to darkness and being in a place of mourning over things lost, and suffering that robbed me of so much life. I told God recently that I have spent too much of my life in a dark hallway grieving over closed doors. It is with extreme gratitude that several years back I had a friend challenge me out of that place, that I was to give my grief as an offering to the Lord and let him exchange it for a different vision, and He was faithful to do so.

So today, I have less to say about the particulars of the symptoms and sufferings of chronic Lyme disease along with its coinfection’s and complications, and less about the emotional place of agony we find ourselves in chronic illness.

Today rather I try and speak from a different place in the journey, a place further up the road, which is more a spiritual place than a physical one. There’s still so much in life that has not yet happened for me, that I have not experienced, that I have not reclaimed from the lost years of the past… and yet, God is with me.

Casket Of Departed Hopes

Being haunted is when something dead will not stay buried, and instead comes back to remind you of loss and death.

It has been a long time, a very long time indeed since I have cried and felt the deep pain of lost hope. Not that I never feel passing regret, but rarely does it cut deep enough (anymore) to cause a night of crying myself to sleep. There was a trigger tonight; beautiful pictures of a friend and her husband enraptured in the joy of a new baby. For some reason even in my happiness for them, a dark window opened in my heart that felt like gazing in a looking glass at what could have been, and (for me) will never be.

Over the past few years I have successfully mastered driving a stake through the heart of hope and moving on with an alternative life path, one that I didn’t choose. I have come to peace with God and even to an understanding of the blessings, like flowers in the weeds of hardship. I had to lay those hopes to rest because the dreams that carried me through years of suffering, seemingly always on my horizon, only to vanish in the harsh light of truth, became only pain, and pain robbed me on a daily basis of both joy and seeing God’s truths.

It wasn’t that many years ago when a state of mourning and grief were my daily countenance, and sadness was a mantle I wore across my shoulders. Constantly looking back at loss, and down at disappointment robbed me daily of any life in my life. I have come a long way since those days, and although a huge component was outside my control (literal bacterial, viral and parasitical infections in my brain and body), there was also a huge spiritual component, and letting go of my expectations for my life and coming to an acceptance of what was my plan Z, but what was God’s plan A was a turning point.

In the many years that I’ve kept a blog, I’ve found that rather than focusing so much on the physical aspects of chronic illness I have found myself writing about the emotion and spiritual experiences. This has been both part of my therapy and advocacy, but also my testimony and how God has led me to have a voice where I would not have otherwise. Does purpose in pain make it easier? Usually, but not always. I do look back though from time to time on where I was at different points along the journey, and it can be helpful on dark nights like this when all I can do is put my pain to prayer.

I’ve come a long way from the little lost girl in a dark corner…

Little lost girl (towards the beginning of the blog): https://jeanvieve7.wordpress.com/2015/06/08/little-lost-girl/

Gratitude: https://jeanvieve7.wordpress.com/2019/01/02/why-im-grateful-for-the-struggle/

Reshaping Hope: https://jeanvieve7.wordpress.com/2016/10/06/some-honest-thoughts-on-a-sunday-afternoon-when-life-reshapes-hope/

Reimagining Hope: https://jeanvieve7.wordpress.com/2018/10/17/out-of-brokenness-reimagining-hope/

Trusting God in difficulty: https://jeanvieve7.wordpress.com/2017/11/30/trusting-god-in-the-process/

Healing and God’s Will: https://jeanvieve7.wordpress.com/2015/12/16/healing-and-gods-will/

And this one that has been republished many times on The Mighty: https://themighty.com/2017/01/facebook-posts-chronically-sick/?utm_source=ChronicIllness_Page&utm_medium=Facebook

So, I no longer pound my fists on the door with the letters that say “what could have been.” And as the years pass the pictures of what lay behind that door fade with increasing frequency into the mist of memory. But those pretty pictures of hope are soiled by the memories of years upon years of grief, regret and mourning and living in a state that robbed me of even more life than my illness did.

So once in a rare while, on nights like this those happy images of a life missed come into sharp clarity, and that sharpness cuts like a knife. And shattered dreams come haunting me at night like some poltergeist refusing to go to its final resting place and instead attaching itself to the living and barring me from moving on…

But this is a bump in the night, and tomorrow is a new day. His mercies are new every morning and His song is with me in the night. As I begin to try and sleep I open my Bible to the verse of the day:

“If you then, being evil, know how to give good gifts to your children, how much more will your heavenly Father give the Holy Spirit to those who ask Him?””

LUKE 11:13

He has indeed been good. And I may not have received all the gifts I wanted, but I am assured that I have received the good gifts I needed.

“No matter what precautions we take, no matter how well we have put together a good life, no matter how hard we have worked to be healthy, wealthy, comfortable with friends and family, and successful with our career — something will inevitably ruin it.

Suffering is unbearable if you aren’t certain that God is for you and with you. Therefore, only when our greatest love is God, a love that we cannot lose even in death, can we face all things with peace.

Ultimately, you don’t really know Jesus is all you need until Jesus is all you have.”

(Tim Keller)

Love Is A Many Splendored Thing

I believe above all things in love;
Love that sets us free

Love that lets us fly

Love that empties us of ourselves 

Love that purifies

Love that conquers all

Love that gives hope in all things

Love that makes dreams possible

Love that builds bridges

Love that has no boundaries or borders

Love that binds together

Love that never lets go

Love that washes away pain

Love that cuts through the darkness like a knife

Love for which you would gladly sacrifice your life

Love that wipes away selfishness

Love that changes hearts and souls

Love that overcomes cruelty and hate

Love that erases the past like sand swept from the shore
I believe in the love of my Father; which will never be shaken, will never change and exists in abundant grace, unending towards me. I believe I cannot be plucked from His hand and He will never leave nor forsake me, no matter what happens or the thousand times I mess up.
I believe in the ultimate sacrifice of His Son; of love through death and unto life. I believe He lives in love to intercede for me and is my faithful Friend forever.
I believe in the love of the Body for each other; Even though we often get caught up in the world and act out of our flesh, squabble, let each other down….

I believe our love cannot ultimately be squelched and is always available to us for each other.
I believe in the love of family; I believe in the bonds of parents and children, brothers and sisters…. and even though many have brokenness and pain, love is always possible. 
I believe in romantic covenant love; and the closest bond that we can have on this earth for another human being. I believe that all obstacles can be overcome and all baggage left behind with the power of Christ, and that the dream of love can be a reality.
Pursue love first, forget the material things that so quickly pass away. 

Hope in love keeps us alive, sustains us when all else fails. Love still conquers all.

Let love lead and be the lens through which you see the world.
~JS

Another chapter in bathtub confessions 

  

The Recipient Of The “No Reply”

Just some musings for today and food for thought.

It’s the feeling you get staring at your IM messenger and seeing that your message has been read by the recipient, but no reply.
It is the feeling of looking at your phone and seeing that you sent that text…..days ago, but no reply.
It is checking your e-mail inbox and wondering if that e-mail you sent per chance went into their spam folder, or into a digital vacuum, or if (gasp) maybe they are injured on the side of the road having flipped their car because they were illegally trying to answer your e-mail while driving and now they are in desperate need of medical care with their phone just out of reach of their fractured fingers….But the result is the same; no reply.

Yes communication has changed and we now live in a digital age. This is a wondrous thing in that we can communicate with each other like never before, anytime, anywhere. For some this is AMAZING because we see too little of people in person and we are hungry for fellowship with friends. For some I know this can also be an annoyance in that we become slaves to our devices. No matter how you feel about digital communication I want to set that aside for a moment and have you consider the thoughts and feelings of the recipient of the “no reply” (please note I am not talking about those that get back to you hours or a day or two later, I know we are busy).

The things that the No Replyee might be thinking or feeling

1. I don’t matter to you.
2. I annoy you
3. You don’t like me
4. I am very low on the list of people in your life
5. I think you are a rude person who is giving me the equivalent of the silent treatment
6. I have offended you
7. You just forgot
8. I am a stupid/annoying/unimportant/obnoxious/ugly/wasteofspace person and no wonder people ignore me and I should just shut up and not contact people because it puts them in the awkward position of just “try and ignore her and maybe she’ll go away”.

    So, for those who never answer I really do spend a lot of time pondering what is going on in your head; when you see a message in whatever form it came in (especially if it is personally addressed to you) and decide to never reply. No really! I am curious because with dead air I can only guess at what is going on with you, and I’m sorry but with my history of where the enemy likes to attack me I am usually going to default to #8. So this is me really and honestly asking the question to those of you on Facebook who I can see have read my IM…..months ago and never replied, and to those who have received texts and never replied, let me know! I have a lot of grace and I am ALWAYS totally cool with “hey sorry, I don’t have time” or if it’s a question just a quick “no”. You aren’t going to hurt my feelings, but please explain the dead air which for the No Replyee is the equivalent of standing in front of you talking and you just staring back not saying a word. It would seem rude right?

Also please have grace for us, the digital communicators. Especially the vast community of us who have endured isolation due to illness and or distance and being able to communicate with our friends digitally is a beam of light in our world.

So. Am I sending this out into the void? Or by chance will a few reply……

beingignored

When People Put You Down For Not “Looking Sick”…. :P

So how do you explain Lyme disease to someone who thinks you “look fine”?

“Imagine the worst flu you ever had. Then, imagine not sleeping for 3 days straight. Then imagine how it feels when you have something on the tip of your tongue, but you can’t remember it for the life of you.….”

http://www.livinglyme.com/Explain-Lyme-Disease.html

So what does “sick” look like anyway? Hair falling out? Swooning on the sofa? Grey clammy skin? Unable to stand up? Most chronically ill people (including a lot of cancer patients, those with heart disease, etc and other “respected” diseases can look perfectly fine). There are those of us Lymies who do suffer from the above mentioned symptoms…these, and far worse. However for the functioning or semi-functioning Lymie not looking like you are suffering while you are suffering on the inside can be a challenge. To everyone around you you might sound like a broken record and people can get weary of the “unending troubles”.

To those of you who know Lyme sufferers; trust us folks we are weary too! We grow tired of how we must sound to you every time you ask us how we are doing. We hate that question because the answer usually involves the high points and low points of our day (which can change radically), one symptom being better while another one is worse… We know how we sound, we are much more tired of talking about our suffering than you are of hearing about it.

Also know that you are statistically more  likely see us when we are at our best, and those times when we “disappear” off the face of the earth for days, weeks or months at a time are the times when we more than likely are in fact swooned on the couch (tv remote in hand).

Please understand how lonely and isolating this life is for us. ( https://jeanvieve7.wordpress.com/2013/07/15/the-emotions-of-an-invisible-illness/ ) The toll it takes on us not just physically but mentally and emotionally. Some of us feel that we have even lost our humanity and who we are as people, and we want nothing more than to get back to real life.

( http://lymelightfight.wordpress.com/2013/06/25/what-i-wish-healthy-people-knew/  )

Trust us, this isn’t fun and we don’t want to be coddled or get undue attention, only understanding and (hope of all hopes) a cure.

Thanks for listening.

alone-lonely-girl-beautiful-sad-waiting-seaside

I don’t want attention

What is your default when you don’t feel well? Some people want attention, some people want to be comforted, some people want to pretend that they are better than they really are. Me? I usually just want to be left alone.
No offense to the dear people I love so much in my life, but it is really hard when you don’t feel well, you look gross and have limited energy to be around others.
For me I think there are two things that being ill long-term has fed in the way of insecurities; although I am a lot better than I used to be, but I still struggle with a negative body image. So when I put on a lot of weight and/or a lot of water weight (gee thanks GI issues and chronic edema) I feel really gross about myself and I don’t want anyone to see me. Also I am an introvert. INFJ/INTJ so it is easy for me to regress into my “cocoon.”

Okay for everyone out there that thinks being introverted means I don’t like people or am antisocial that’s not true! It means that I greatly value time with a few people vs a hoard, or one on one. There is nothing so wonderful as having a great conversation with one friend or a couple of good friends.
but when you don’t feel good, and or don’t look good, putting out social energy is tough.
So in these last several weeks with this little health setback I have been thinking that I have been isolating again. So I’m just putting those thoughts out there for today. Is this true for any other sickies out there?

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The Emotions Of An Invisible Illness

This is a re-post from May, but it just feels very relevant right now. You see in spite of having some days of feeling better I feel really emotionally depressed today; when you are so ill that you are barely functioning you literally just live life day to day, because that is all you can handle, I call it survivor mode. When in survivor mode you ignore all the “big” things…all the things that normal people are out there doing because it is just too much, and too painful. So what happens when you start to feel a little better? You realize how much older you are, how many years this disease has eaten away, how very lonely and single you are (at least me), and that your youth was eaten by bacteria…literally. 

    So boo hoo this is just how I am feeling tonight, I am in NO way ungrateful that I am feeling better at the moment, just being honest. That said, here is my original post:
 
Feelings and Emotions
Lyme disease can be (dependent on your symptoms) what is called an invisible illness. Meaning that you can “look” fine while inwardly you are suffering pain, fatigue, weakness, brain haze and confusion, visual problems, “Lyme brain” (dyslexia, inhibited reading comprehension, cognitive issues, memory problems, inhibited name and word recollection), digestive disorders, edema, poor circulation, cellular oxygen starvation, reduced lung function….
  
       These are all symptoms that the people around really can’t see, and it is hard to explain sometimes to someone that you generally just don’t feel well. I think people are more understanding of people who are in cancer treatment and going through chemo, how horrible they can feel, their disabling fatigue and pain. Now please, do NOT think that I mean everyone with Lyme is going through what some cancer patients go through, I just mean that the general public know and understand cancer better.
        I am going to run down some of my personal emotional experiences of being sick, before and after diagnosis. Since I have not experienced some of the very severe symptoms of Lyme I am not going to bring them up (Seizures, Palsy, MS symptoms, Alzheimer’s symptoms, ALS symptoms,….death).
 
ISOLATION: It begins slowly, you are too tired on the weekend or after work so see your friends or do the activities you used to do. People who you used to see regularly don’t call as often and stop inviting you to activities, because they know you will just say no. After time you stop contacting other people, you lose interest in social activities, both because you don’t have the energy and because your brain hormones are now so out of balance you simply don’t care. A state of apathy takes over and your world is your illness. If you are able to work this requires 100% of whatever mental and physical energy you have just to function. At the end of the day you are tapped out, and you honestly don’t even have the desire to talk to anyone. For those around you it may seem like you don’t care anymore, you may be grumpy and irritable, and you don’t communicate like you used to. For you the “not caring” is true, not because you truly don’t care, but because fatigue has set into your brain and bones and you find you don’t have the ability to care.
 
  DEPRESSION AND LOSS OF SELF: Depression and physical/mental fatigue can be hard to separate sometimes, and honestly I do not always know where one ends and one begins, or at what point they are like paint colors mixed together, indistinguishable one from the other, but I will try. Depression comes on slowly, fueled by the physical pain and symptoms, encouraged by the isolation, and made prominent by losing yourself. By “losing yourself”  I mean I think back to who I was in the past, in those windows of time when I was fairly healthy; I loved photography, hiking, biking, yoga, writing, art, music, being creative, cooking and baking, and many other things. As illness takes over those things fall away, and then your interest in those things falls away, and then the very memory of those interests and desires falls away, and suddenly you really don’t remember what it feels like to be you. Nothing is interesting anymore, and even if it was it takes too much energy to pursue it. So when you spend what little energy you possess on just your responsibilities (job, laundry, doctor appointments) and nothing else, you go into survival mode, and life is about just getting by…..taking pills….breathing, you become a drone.
It took me a while to realize that the lack of emotion that had become my reality was itself an emotion as well. Depression is often not always “feeling” down, but shutting down. I also went through a few months in my treatment where I literally was bed ridden most of the time, during that time I did reach a few rungs lower on the depression ladder. I thought of giving up, that life wasn’t worth it anymore, that things just kept getting worse not better. I am thankful that slowly, a few steps at a time that period did dissipate, both with high doses of vitamin B and just with time…getting past that rough patch in my treatment. But I need to say most of all God was speaking to me through all of it, and trying to reach me on a deeper level, and I had to actively reach back and be embraced.
 
ANGER: Anger (for me) has been strongly tied into the physical, but it is still a strong emotion I have experienced throughout all this. I have been angry at life for many years for cheating me out of my youth, for robbing me of experiences, for eating my flesh and my cells and my skin…experiencing physical time passing without reaping any of the benefits those years could have given me.I even have to admit experiencing times when I was angry at God. I didn’t want to be, I knew He was good, that He had reason and a purpose, but when you are sick and “blind” all you know is your pain and disappointment, and anger. Thankfully I have talked it through with Him, and have been led back out. But it was not until I surrendered that God has started to open my eyes to some of the reasons I am on this journey. FYI, be very careful if you ever consider praying with an honest heart for faith and a strong testimony, you do not know what you are going to get.
     Like I said, anger for me can be unexpected and mostly physical, primarily tied to my liver. This might sound odd, but it is true, and Angry Liver isn’t just some random term. When my liver is “angry” (overly toxic, backed up, overwhelmed) the anger can be very mild, or I can feel like I want to punch, kick and swear for absolutely no reason, and then be miss sunshine again the next day. Thankfully I now recognize it when it happens, and have tuned in to the actual physical feeling that comes with it. There are different methods to helping your liver along, some of which are probably TMI for the emotion page, but I have learned to deal with.
 
      SUMMARY:So these are the base negative emotions that I have gone through, all in various degrees at different times. I am better than I was in 2012, but I still have a long way to go. Taking care of the emotional toll an invisible illness has on you is a multiple course of action process;
 
       Time. Just getting through the time it takes with your Lyme treatment, letting the drugs run their course, getting past when they make you feel worse, making it through the worst of your die-off and Herx reactions.
 
     Love. I am blessed to have people in my life that love and care for me, both friends and family. Surround yourself with the people that love you, that are willing to listen to what you are going through and want to try and understand.
 
    Acceptance. This was the hardest part for me because I did not (still don’t) want my identity to be that of a sick person. But you do come to realize that is who you are anyway, whether you label it or not. This is the life you are living. There seems to be a process when you are diagnosed with an illness; Denial, shock, depression, acceptance, fight! Accept where you are in this process, move forward with optimism but accept where your body is now. This will free your expectations and your mind so you can get better. Be kind to yourself, even if you can’t do much spoil yourself with good music, beautiful pictures, whatever brings you even a spark of joy.
 
   Community. It has been very encouraging and supportive to find others out there that are going through similar experiences. Through WordPress and Tumblr I have found others that can support me, and that I can encourage as well. As far as you are able, reach out.
 
     God. You may or may not be at the place where you have a relationship with God, I hope you are. I cannot imagine going through what I have without knowing that I have a Father, a Protector, a Shield.  He is my Strength, my Hope, my Everything. I know “I have a future and a hope” in Him. I know that “All things work together for the good of those who love God and are called according to His purpose”. This journey has been tough, but knowing that it is being used for God’s purpose does give me peace and hope. He knew all this was going to happen, nothing is a surprise to Him, He gave me this set of circumstances because He deemed I could handle it, and submit to His will being done through it. I have been honored

Lyme Awareness Month Post 1.0 Feelings and Emotions

Lyme Awareness Month

 

Post 1.0 Feelings and Emotions

 

Lyme disease can be (dependant on your symptoms) what is called an invisible illness. Meaning that you can “look” fine while inwardly you are suffering pain, fatigue, weakness, brain haze and confusion, visual problems, “Lyme brain” (dyslexia, inhibited reading comprehension, cognitive issues, memory problems, inhibited name and word recollection), digestive disorders, edema, poor circulation, cellular oxygen starvation, reduced lung function….

   These are all symptoms that the people around really can’t see, and it is hard to explain sometimes to someone that you generally just don’t feel well. I think people are more understanding of people who are in cancer treatment and going through chemo, how horrible they can feel, their disabling fatigue and pain. Now please, do NOT think that I mean everyone with Lyme is going through what some cancer patients go through, I just mean that the general public know and understand cancer better.

 

I am going to run down some of my personal emotional experiences of being sick, before and after diagnosis. Since I have not experienced some of the very severe symptoms of Lyme I am not going to bring them up (Seizures, Palsy, MS symptoms, Alzheimer’s symptoms, ALS symptoms,….death).

 

ISOLATION:

 

It begins slowly, you are too tired on the weekend or after work so see your friends or do the activities you used to do. People who you used to see regularly don’t call as often and stop inviting you to activities, because they know you will just say no. After time you stop contacting other people, you lose interest in social activities, both because you don’t have the energy and because your brain hormones are now so out of balance you simply don’t care. A state of apathy takes over and your world is your illness. If you are able to work this requires 100% of whatever mental and physical energy you have just to function. At the end of the day you are tapped out, and you honestly don’t even have the desire to talk to anyone. For those around you it may seem like you don’t care anymore, you may be grumpy and irritable, and you don’t communicate like you used to. For you the “not caring” is true, not because you truly don’t care, but because fatigue has set into your brain and bones and you find you don’t have the ability to care.

 

DEPRESSION AND LOSS OF SELF:

 

Depression and physical/mental fatigue can be hard to separate sometimes, and honestly I do not always know where one ends and one begins, or at what point they are like paint colors mixed together, indistinguishable one from the other, but I will try.

   Depression comes on slowly, fueled by the physical pain and symptoms, encouraged by the isolation, and made prominent by losing yourself. By “losing yourself”  I mean I think back to who I was in the past, in those windows of time when I was fairly healthy; I loved photography, hiking, biking, yoga, writing, art, music, being creative, cooking and baking, and many other things. As illness takes over those things fall away, and then your interest in those things falls away, and then the very memory of those interests and desires falls away, and suddenly you really don’t remember what it feels like to be you. Nothing is interesting anymore, and even if it was it takes too much energy to pursue it. So when you spend what little energy you possess on just your responsibilities (job, laundry, doctor appointments) and nothing else, you go into survival mode, and life is about just getting by…..taking pills….breathing, you become a drone.

    It took me a while to realize that the lack of emotion that had become my reality was itself an emotion as well. Depression is often not always “feeling” down, but shutting down. I also went through a few months in my treatment where I literally was bed ridden most of the time, during that time I did reach a few rungs lower on the depression ladder. I thought of giving up, that life wasn’t worth it anymore, that things just kept getting worse not better. I am thankful that slowly, a few steps at a time that period did dissipate, both with high doses of vitamin B and just with time…getting past that rough patch in my treatment. But I need to say most of all God was speaking to me through all of it, and trying to reach me on a deeper level, and I had to actively reach back and be embraced.

 

ANGER:

 

  Anger (for me) has been strongly tied into the physical, but it is still a strong emotion I have experienced throughout all this. I have been angry at life for many years for cheating me out of my youth, for robbing me of experiences, for eating my flesh and my cells and my skin….experiencing physical time passing without reaping any of the benefits those years could have given me.

I even have to admit experiencing times when I was angry at God. I didn’t want to be, I knew He was good, that He had reason and a purpose, but when you are sick and “blind” all you know is your pain and disappointment, and anger. Thankfully I have talked it through with Him, and have been led back out. But it was not until I surrendered that God has started to open my eyes to some of the reasons I am on this journey. FYI, be very careful if you ever consider praying with an honest heart for faith and a strong testimony, you do not know what you are going to get.

   Like I said, anger for me can be unexpected and mostly physical, primarily tied to my liver. This might sound odd, but it is true, and Angry Liver isn’t just some random term. When my liver is “angry” (overly toxic, backed up, overwhelmed) the anger can be very mild, or I can feel like I want to punch, kick and swear for absolutely no reason, and then be miss sunshine again the next day. Thankfully I now recognize it when it happens, and have tuned in to the actual physical feeling that comes with it. There are different methods to helping your liver along, some of which are probably TMI for the emotion page, but I have learned to deal with.

 

SUMMARY:

 

So these are the base negative emotions that I have gone through, all in various degrees at different times. I am better than I was in 2012, but I still have a long way to go. Taking care of the emotional toll an invisible illness has on you is a multiple course of action process;

Time. Just getting through the time it takes with your Lyme treatment, letting the drugs run their course, getting past when they make you feel worse, making it through the worst of your die-off and Herx reactions.

 

Love. I am blessed to have people in my life that love and care for me, both friends and family. Surround yourself with the people that love you, that are willing to listen to what you are going through and want to try and understand.

 

Acceptance. This was the hardest part for me because I did not (still don’t) want my identity to be that of a sick person. But you do come to realize that is who you are anyway, whether you label it or not. This is the life you are living. There seems to be a process when you are diagnosed with an illness; Denial, shock, depression, acceptance, fight! Accept where you are in this process, move forward with optimism but accept where your body is now. This will free your expectations and your mind so you can get better. Be kind to yourself, even if you can’t do much spoil yourself with good music, beautiful pictures, whatever brings you even a spark of joy.

 

Community. It has been very encouraging and supportive to find others out there that are going through similar experiences. Through WordPress and Tumblr I have found others that can support me, and that I can encourage as well. As far as you are able, reach out.

 

God. You may or may not be at the place where you have a relationship with God, I hope you are. I cannot imagine going through what I have without knowing that I have a Father, a Protector, a Shield.  He is my Strength, my Hope, my Everything. I know “I have a future and a hope” in Him. I know that “All things work together for the good of those who love God and are called according to His purpose”. This journey has been tough, but knowing that it is being used for God’s purpose does give me peace and hope. He knew all this was going to happen, nothing is a surprise to Him, He gave me this set of circumstances because He deemed I could handle it, and submit to His will being done through it. I have been honored.Image