My Secret Life… with LYME DISEASE

My Secret Life with Lyme Disease

“How are you?”……
The question that feels like it requires a lie for an answer….

It seems to be the social thing to ask and the social thing to say is “good” or something like that. No one really wants to hear how I am… Honestly I don’t want to hear myself tell you how I really am.  This question is a double edged sword. It cuts deep because I really do want you to care about how I am… however I don’t want to say it out loud.

God calls us to love one another and to love in a way that true love casts out fear.  He calls us not only to worship together but to really share our lives with each other….

So I’m going to share a piece of my hidden life with you…

I used to be ashamed about having this horrid disease, like somehow it was my fault or I was too weak to overcome it. Or be embarrassed that I’m limited in doing little things, like being able to get up off the floor or just stand up and walk without limping. Or even pick up and move something simple (like my crystal butter dish that I shattered because my hands weren’t working right).   [If you want to know the story of my journey fighting Lyme please read this amazing story written by a good friend of mine]

Now I know that this is the nature of this illness… It has nothing to do with who I am. But how I deal with it has everything to do with who I am…. I am a fighter, I am a warrior, I am an optimist, I am an encourager, I am joyful!

So if you ask me how I am and I say I’m good or alright or doing pretty decent or hanging in there, those are all answers that pertain to how I am doing mentally and spiritually. It tells you how who I am on the inside is doing and how I am coping with my life and situation. So my answer isn’t a lie but it isn’t the truth about my body. If you want to know how my body is you have to ask a completely different question…. “How is your body?” please don’t ask the question I really dread “How are you feeling?” (This makes me focus on how my body is AND how I feel about how my body feels…yuck!)  Honestly I hope people don’t ask how my body is because I need to focus on hope and where I want to go.  I need to keep my mind on positive thoughts. If I say it out loud it becomes too real and horrible. Sometimes by talking about it a decent body day can turn bad by magnifying the bad stuff going on in my body and turn it into an awful day. Even writing it down is terrible for my spirit.

So I dread the question because I dread the answer more… the answer might make me cry.

I also want to prevent “the look”… The look that says you are worried for me or concerned for me or asking me if I really should be doing what I’m doing, because my body isn’t up for it.  Or the “knowing look” that you know my secret and I may not be able to function tomorrow because of what I choose to do today. The look that says I’m not normal. The look of judgement that I should or shouldn’t be doing something. Or the look of pain reflecting my pain.

I don’t want to see “the look” of a thousand thoughts that can’t be good because they have to do with my body and this thing called Chronic Lyme Disease. This is just one more reason why I don’t share… I keep my secret. I work hard to make sure no one sees me flinch in pain or walk with a limp. I don’t want to bring attention to the pain and my problem. I choose to stand, while completely exhausted and in pain, because I know if I sit my legs may lock up. Then to get up and walk again I will look injured or 100 years old… I don’t want the questions… So I just don’t sit down. :( Or if I must sit down I may not move for a while… or I might wait until no one is watching before I stand up.

I choose to focus on where my spirit is. My spirit is full of joy! I walk by faith and allow God to carry me through, my relationship with Jesus is what gives me confidence that I’m not alone and I have purpose. The Holy Spirit is my comforter and my counselor during my situation. Prayer is the conversation that keeps me going whether the answers I want come or not. So, if you ask me how I am I will tell you how my journey is going. I may even tell you how I am mentally coping but I rarely tell you how my body is doing. There may be pain in my body and tears in my eyes but there is joy in my heart. I will not let the enemy steal my joy!!

So, if you must know… I am very human so this all takes a toll on me emotionally and I cry about it… A lot. Not in a pity party feel sorry for me kind of way but I have to release the physical and emotional pain daily through tears. These tears cleanse me and allow me to keep living in joy. If I hold them in I will become unpleasant and yucky and that isn’t who I am. So I cry out the ugly and walk in the beauty God has placed in my soul! You may never see me cry… I do my best to not share sadness so hopefully you have only seen my smiles. Many times I’m smiling and my eyes are full of tears…. They just haven’t fallen yet. I don’t look at my tears as weakness. I look at them as strength! When I let them fall I let God replace them with joy in my heart.  I look at my tears as a gift… I used to think that crying was inconvenient and not a good thing or even a sign of weakness. Now I look at the abundance of tears I have as a gift. Honestly I cry (tear up) often. My eyes fill with emotion water when I see kindness or love or worship or strength or evidence of faith or selflessness or happiness and when I see others doing something that I am unable to or when I experience pain or lack.  Allowing the tears to fill my eyes helps me live in strength and faith. I’m human and I realize that tears are the way my body acknowledges my spirit being touched by something amazing or painful!!

2Corinth“At first I didn’t think of it as a gift, and begged God to remove it. Three times I did that, and then he told me, My grace is enough; it’s all you need. My strength comes into its own in your weakness. Once I heard that, I was glad to let it happen. I quit focusing on the handicap and began appreciating the gift. It was a case of Christ’s strength moving in on my weakness. Now I take limitations in stride, and with good cheer, these limitations that cut me down to size—abuse, accidents, opposition, bad breaks. I just let Christ take over! And so the weaker I get, the stronger I become.”
2 Corinthians 12:8-10

Taking inventory on my body sucks and has for years. Sometimes it is better and sometimes it is worse and sometimes I feel like I’m dying and sometimes I’m so thankful I can walk around and appear normal. If I fall off the radar or disappear for a while it probably means my body is struggling, either I’m not up to getting out or I want to make sure I don’t have to talk about the misery my body is experiencing. Another reason could be that I’m actually having a better day and I’m taking full advantage and trying to get as much work done as possible or enjoy my family and don’t have time to chat. 😉

I don’t think I have “felt like” doing anything in years. Even on better days my eyes may be burning or my mind may be in a fog or walking is painful or exhausting. I always want to be sitting down, lying down or in bed alone resting. Even the things that I should look forward to just aren’t all they should be for me.

I make the most of it in my life all the time, but I am tired of having to work so hard to feel normal. I wish things were easier.  Typing this out kind of feels depressing. Part of me hopes no one reads this. After putting this on paper it kind of looks like I’m pretending my life away…. But really I’m making the most of a really messed up situation and hoping and fighting for my body to feel good again someday.

Sometimes I just sit and watch people and wonder how they feel… do they feel good or are they grinning and bearing it too.  Sometimes I wonder because I just don’t feel normal. I remember a normal, at least what felt normal but then again I never was completely healthy (because the Lyme has been there since I was a kid) and I always struggled with one symptom or another. So I don’t really know how I should feel, all I know is that I should feel better than this. I actually don’t feel up to doing anything and I haven’t in years but I keep making myself because I want to live a life worth living. So I press on ignoring my body and I go do fun things and laugh and I enjoy myself the best I can.  Because if I can’t do that, then that is just way too depressing and I AM NOT and I WILL NOT let this bring me down!

My life is crazy hard, everything I do is hard, everything I want to do is hard, life is crazy hard. I cry about wanting to be living a normal life but then I also cry because I’m grateful about how things have been worse and that I am SO thankful that I’m not debilitated anymore.  I also cry for all the others out there that are debilitated or in this fight too. Oh how my heart breaks for them!!  I would not wish this on my worst enemy.

I long for things to be easier. I long for the day that I can run and I long for the day that I can walk without being exhausted or being in pain. I want so much to be able to run and chase my sweet little ones… They look up at me and shout “Mommy run” and take off running wanting me to run with them.  I desperately want to play with them like a little kid. I don’t want to live in a body that is broken and doesn’t work right. I will fight every day of my life to have that ability again!

james1“Consider it a sheer gift, friends, when tests and challenges come at you from all sides. You know that under pressure, your faith-life is forced into the open and shows its true colors. So don’t try to get out of anything prematurely. Let it do its work so you become mature and well-developed, not deficient in any way.”
James 1:2-4 

I am thankful I can lift my arms to wash my hair, because that is something we all should not take for granted. I’m thankful that it is no longer necessary  that I use a handicap stall in the bathroom (most days).  I used to get stuck on the toilet because I couldn’t get up.  My legs had such muscle weakness and hurt so bad they just wouldn’t work right.  I’m so thankful that it isn’t always a necessity right now. 😉 Honestly I don’t really want to share with you that this is a reality for me sometimes.

I keep all of these things hidden from people because I don’t want someone to feel sorry for me. Or look at me like I’m the sick girl. Or think I am looking for their charity or something.  It is financially devastating to constantly make decisions about whether I have enough money for my treatments, because we still need to eat this month.  But I don’t want to share that either! Even the number or pills or remedies or therapies I do each day.  Honestly I kind of keep all this hidden so even I don’t think about it… so writing all this stuff down is hard. I don’t like to share this stuff. I don’t like to think about this stuff. Because honestly I don’t want this to be my life. So I do whatever I can to make it not be my life. The reality and the truth is just too painful so I do everything I can to pretend this doesn’t exist for me, so that my misery doesn’t affect anyone else. I do my best to not talk about it or dwell on it, because it will destroy my soul and my spirit and it will bring others down and make them feel sorry for me. That is not who I am. I only want to bring joy and light to this world. So many times I think of my friends and I don’t call… I miss them and want to hear all about their lives but I don’t want the question… “How are you?” It is a terrible question for someone with Chronic Lyme Disease. I don’t want to hear my answer… I want to know about YOUR life instead! So, again, I keep my secret and it creates distance from the life I want and the life I have.

I have been actively fighting for 14 YEARS and have been symptom free (or in remission) TWICE. I am currently NOT :(   I have spent the last three years realizing that I may never be truly healthy again because there seems to be no real cure. And just recently I’m starting to come to grips with that. Which means that my life has to be adjusted to this different life all the time… But I will fight for a normal life again always. I will fight to be symptom free again!

My entire life revolves around how I feel and how I might feel… It doesn’t revolve around a calendar or a work schedule or my family. Absolutely everything involves me thinking about how I feel. Will I feel good enough to be upright? Will I feel good enough to walk that far? Will I have enough energy to get through that? Will I be able to think good enough to accomplish what I need to do? Will I have what it takes? Will I be able to be around people that long? How much recovery time will I need if I do that? Can I fit my treatment protocol and therapy in that day too?  Will I be herxing after today’s protocol? Will I feel like I have the flu tomorrow? If I do this today will I be able to function tomorrow?

I don’t like committing to things in the future because I have no idea what my future holds. I rarely tell my kids ahead of time before we do something because I don’t want to let them down if I wake up that day and don’t think I can do it. I look forward to the days where I can plan my life without thinking about how much I need to take care of my body just to keep it functioning. Will I have enough time to rest, use my sauna, use my hot tub, eat right, take my protocol, etc…. Or even scheduling time to rest after I do something so that I don’t completely fall apart and become debilitated again.  It is exhausting having my whole life revolve around keeping my body functioning. (To learn a bit more about what this is like please read THE SPOON THEORY) I keep living and doing… I don’t wait until I feel up to it or feel like it, I do it when I’m physically capable to do it without appearing like there is something wrong. I do my best to not show pain or limp around others. So, if it is so bad I can’t hide it then I don’t.  I stay home.  I wait until the pain or exhaustion is just below debilitating and I get out there and live my life through the pain and fatigue.  My personality hasn’t changed from years ago… But how I handle my life has drastically, which then in turn affects how I act and live, which has then in ways affected how I feel or may be perceived.

Perception is a real thing and so is reputation. Who wants to have their reputation hurt because they are chronically ill? Definitely not me. I have a lot to offer as a healer, artist, designer and massage therapist.  If I tell people how I really am all the time I would first be viewed as a complainer and no one would call me for anything because I would appear too sick. I may not be well but I can still do so much and I don’t want to appear any less. So… yet another reason for a secret life.

Sometimes there is so much going on at one time in my body I don’t even know where to begin to explain it anyway.  Symptoms that occur occasionally or daily and vary in degree of severity: muscle pain, stiffness, muscle weakness, joint swelling, joint pain, flulike symptoms, feverish feeling (but no fever), blurry glowing vision, headaches, skin pain, feeling I’m bruised all over, swollen lymph nodes, sick fatigue-glued to the bed unable to get up, body aches, feeling faint, dizzy, random vibrations in random body parts, mental brain fog, unable to multitask, memory loss, anxiety, dark thoughts out of no where, heart palpitations or heart stressing, chest pain, sleep problems, detoxification issues, inflammation, sore throat, arthritis, itching, crawling sensations, sensitivity to sound or light, shortness of breath, irritable bowel issues, intestinal cramping, urinary frequency, hair loss, hormone imbalances, adrenal fatigue, racing heart, feely shaky all over, pain and more pain. Parts of my body affected by symptoms: almost all of them- head, jaw, eyes, ears, neck, spine, arms, fingers, wrists, shoulders, rib cage, heart, hips, legs, knee, feet, toes, skin, lymph nodes, etc..

So, again another reason for my secret… There is too much to explain there is too much to remember there is just too much. At times one symptom or all of them debilitate me and other times I can function. The roller coaster never seems to end. Roller Coasters can make you nauseous so let’s just not go on this roller coaster together.

Day to day is a crap shoot and I never know what I’ll get. Every night I go to bed with the expectation that I will feel fine in the morning, weird I know, but true.  Every morning I wake up to check how locked down my fingers are and how hard it is to open them. Then I check my feet and toes. These are both a good gauge of how good or bad the rest of my body is. Then I try to move and see how heavy the comforter is. That tells me how bad the muscle weakness is because sometimes it is so severe I can’t lift it. Then I try and move my legs to see how bad my knee is. It is already huge and swollen but is the swelling and pain super bad or not? Then I put my feet on the floor to see if my legs and feet can support my weight. Then I hold on to the bed and walls as I walk to the bathroom. If the floor isn’t picked up I could trip and fall because my legs and feet are barely working.  Oh and then I also find out if I have horrid flu like symptoms or not. Some days are easier and other mornings are excruciating. I never know what I’m going to get. Sometimes when I lay really still the ache in my body is very little and I forget for a moment that my body is so broken. I have visions of what I’m going to do that day and I get excited…. Then I move… Happy thoughts over and the reality of my roller coaster sets in.

Having the joy of being symptom free only to have it ripped away by a trauma, accident or common illness is devastating and traumatic… Another horrid dip in the roller coaster.  PTSD is a real thing for those with Chronic Lyme Disease. I know what it feels like when my body is trying to die. Yes I am traumatized by that and never ever want to experience it again. Could it happen again? Yes. Am I determined to climb this mountain so it won’t? HELL YES!!!!  But do I really want to talk about something so frightening? Um NO. Who wants to talk about their abuser and all they have done to them? Being trapped and brutally tortured for months and years on end… Not exactly happy thoughts or happy conversations. Someone should stop this abuser and never let it hurt another living soul! But that hasn’t happened yet! This abuser is on the loose catching others and tormenting them, letting them go and then trapping them again. It is brutal and a CRIME!! It breaks my heart in a terrifying way when I hear of others experiencing this abuse! Talking about that is excruciating as well. Because I know they may be able to escape it for now but it could come back when they least expect it, devastating their lives all over again.

1thess1“Although great trouble accompanied the Word, you were able to take great joy from the Holy Spirit!—taking the trouble with the joy, the joy with the trouble.”
1 Thessalonians 1:6

This war is all-consuming and can feel awfully lonely. There may be millions of others suffering but I feel alone at times. I need a team of people helping me to maintain, heal and hopefully recover but I’m left with not much help.

  1. The medical community doesn’t have a real cure. I did 3 years of antibiotics including a pic line of antibiotics but was not cured.
  2. The majority of the medical community is brain washed or something… there may be a conspiracy… all I know is most don’t even think this thing called Chronic Lyme Disease even exists!
  3. Even if there was something more modern medicine could do for me insurance wouldn’t pay for it and I’m out of money to try it.
  4. My Lyme Literate Medical Doctor is 6 hours away. I can’t afford the time, the gas, hotel or office visit (can’t take insurance because insurance companies attack Lyme Docs and try to take their licenses.) I’m using all the info he has given me to do it on my own but can’t even afford to purchase all the treatments.
  5. I need a full time Physical Therapist to help guide me and help me stick to therapies that will help me along the way on good and bad days.
  6. I could really use someone to hold my hand and guide me every step of the way, but most people are clueless and the ones that aren’t are really out of reach physically and financially.
  7. Every person with Lyme could use a good counselor but there are few out there that have any idea what we go through.
  8. It would be great to have an acupuncturist, chiropractor and massage therapist for weekly therapies to keep me in top shape. But again time and money are in the way.
  9. I could use a full time housekeeper so I don’t have to spend my limited energy on cleaning. I could benefit from having a full time chef so I always eat the best for healing even when I can’t function or don’t feel good enough to grocery shop or cook.

So, I continue to make it work and do this life the best I can and work to recover the best I can! I don’t want people to feel sorry for me and I don’t want their charity… I just want to be well! Life is already challenging enough without this horrid abuser plaguing my body and the knowledge it could get worse… yes, I’ve learned It really can get worse…

Their is some support from others who have Chronic Lyme Disease but each of them are on their own personal journey… Everyone’s body is reacting differently and no one treatment works for everyone. Some are doing better and some are doing worse. Some are complainers and depressed while others are focused on hope. It is a mess! We are all doing our best to get by and get well. But we are all in the mess together but feeling totally alone at the same time.

My close relationships are guarded as much as I can, because day in and day out for years on end my war is still happening even though life is going on around me. So I do my best not to share or complain because it really gets old. (This can make the journey lonely as well.) I know I don’t want to hear it so I’m sure they don’t either. Then there are the people I haven’t seen in years and they say, “you are STILL dealing with this? I thought you were better??” Ugh! Me too! I was better but now I’m not. Oh how I am so tired of talking about this all-consuming curse and abuser of my life!!!

One thing that Lyme has done to my life is that I rarely genuinely “let loose and have fun”. I mean I do fun things all the time and I smile and laugh too. But Lyme has stolen my let loose carefree spirit because I can’t let loose because I must be on constant guard to not let my body be in more pain than it already is. I have to be careful how I walk or move or sit or touch people, because it could possibly cause more pain. So being carefree is impossible because I am constantly needing to be careful. Careful to not overdo it if I am feeling decent and careful to not cause myself more pain…. Constantly careful. Going and doing fun things is exhausting and uncomfortable. So if you add in being uncomfortable constantly, to constantly needing to be careful it makes it very difficult to truly “have fun” and truly enjoy life. I constantly tell myself to not think about how my body feels so that I can try and be present in the moment to enjoy as much as I can from what I am doing. All this and I am so much better than I have been in the past!! I am so thankful for where I am now. I am not glued to the bed all the time and I can physically walk again! That is a huge deal and I don’t take that for granted! I’m so much better than I was a year ago and 6 months ago! What I’m currently doing is working but it is slow… I feel like a snail climbing a mountain! However, I still long for the days when living life is easier and I don’t have to push through pain. 😉

Isaiah40“But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.”
Isaiah 40:31 

Oh and I’ve given up so many things I love… Do I really want to talk about all that? No. Changing your life because of something you can’t control is terrible. I’m focusing on what I CAN do and what I CAN try and enjoy. Nobody really wants to hear me talk about the things I don’t do or the things I would love to try but know that my body just can’t do.  Honestly I don’t want to hear myself say it out loud. – The things I can’t do anymore (or if I do try and fake it I’m in pain): Run, dance, crawl, sit on the floor, yoga, water ski, roller blade, golf, pilates, snow ski, jump, jump on a big trampoline, hike, play on the floor, hula hoop, rafting, long walks, rough house, tickle fights or exercise normally. – Things I wish I could try – Zumba, rock climbing, running a 5K, canoeing, surfing, martial arts, etc… Trying to explain to someone why I can’t do something even though I look normal is complicated so I try and avoid it. Not only am I physically unable to do things I love but I’ve also lost the time and energy to do hobbies I can actually physically do. When so much time and effort goes into living and recovering there is very little energy, brain power or creativity left for something just because I like it.

My daily mantra – “I can do this!  I can do this!  I can do better!”

Day in and day out living in this is crazy hard… what keeps me going is there is a purpose for my life and this is definitely not my home.
I get to go to my true heavenly home because Jesus died for me!! That is good news because where I live now is definitely NOT my home!! I’m relieved to know that someday the pain and suffering of this world will be gone and I’ll be worshipping for the rest of eternity! Until then I pray my life brings light to others to help lead them out of darkness!

2Cor1“He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us.”
2 Corinthians 1:4

I am no longer ashamed or embarrassed by how limited and dysfunctional my body is. My body is a strong warrior and doing its best to fight while living! Just a little shout out to my body for being so tough and a BIG prayer it will win the war! I have experienced months on end debilitated in bed from pain unable to even go to the bathroom on my own… It is a miracle I am able to function again! A battle has been won but there is still the war! I will never stop fighting! Just in case you were wondering, I am still me on the inside no matter what may be going wrong with my body!

ephesians6“For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms.”  Ephesians 6:12

If your life is similar to mine or if your secret life is full of darkness I have prayed for you! Remember Satan is the true enemy…. Fight to allow your spirit to live in heavenly places, even though your life on earth is full of pain. You are blessed with an imagination… Use it and let your spirit soar to beautiful places. Don’t let the enemy win the war!

If you read this far and are a person with money, influence or power in this country please take the time to work to change the world!  We need all the help we can get to prevent others from having to suffer like this.  We need better testing, better treatment, medical support, insurance support and a cure!  Chronic Lyme Disease is at an epidemic level and a world wide pandemic!

Love to you all!

Jessica :)
XOXOXO

Feel free to follow more of my story HERE

P.S.  Sometimes I may feel like the Rustin Tin Man…. but I can still wiggle enough to bust a groove if you turn on some fun tunes!!  Let’s go Shake it Off!!  hahaha!

 

 

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