Stuck In Between

I’m stuck. Some days its more like being trapped.  The last few months have been pretty much a living nightmare.  I’ve had so many set backs with treatment.  My body is worn out and my brain is a mess most of the time.  I can deal with pain, chronic pain, severe pain (maybe that’s why tattoos have never been a painful experience but more of a relaxation and release.) It’s the mental and emotional aspect that is proving to be the most difficult and taxing part of treatment and recovery.

Treatment has changed me in ways I couldn’t even conceive before. Living with an analytical brain for as long as I can remember, I really only knew 2 emotions: anger and non anger. When I say anger, I mean that deep-rooted kind of anger that makes you mean and nasty and lash out without any control of it.  I could be sad (which I was a lot), I had moments of happiness and love but nothing compared to what I am able to experience now.  Frankly, my emotions are overwhelming most of the time.

It’s so challenging.  I’ve become someone completely different.  Someone I always hoped I could be (still working out the kinks, but being a Virgo I’ll always be seeking the unachievable perfection which doesn’t exist-put I’ll keep trying and changing and evolving.) I experience everything like a baby, taking in all the new things around me.  Problem being that no one wants to see me for who I am, only what I was.  That person is dead and gone and I’m glad.  Only in reflection am I able to see my mistakes and the flaws and how I must have made people feel.  That leaves me with a sense of guilt. I couldn’t change it then because I was too sick and I didn’t even know that was the reason.  I spent years in and out of therapy trying to change and be this person I’ve become.  I don’t think of it as a waste because I did gain a lot from it, but it could only get me so far because I was sick and I didn’t have blood flow going to the right side of my brain (where my emotions lay near death, so much so that I thought they were dead.)

It just started raining outside.  I can hear the raindrops and the rumble of thunder. “I like storms.  They let me know that even the sky screams sometimes.” The barometric pressure doesn’t help my body, but the rain (hearing or watching it) soothes my soul.  I have become very spiritual throughout this process of healing.  I have talked to a priest,  been to church and want to continue to go when my body allows me, but nature…that is what makes me feel closest to God.  I can “see” the beauty of God’s creation and it gives me this great comfort inside my heart and soul and it takes away the chaos in my mind.

I have a place that no one knows exactly where it is or goes to.  I walk down to the river.  Depending on my mood, I go left to hear the water gushing over the rocks and moving quickly or I go right where the water is calm and silent.  I usually go left.  I walk up the sandy “beach”, and sit on the rocks. Sometimes I walk through the water to the middle of the river to sit and feel the cool water running over my legs and feet, washing away the rest of the world. (This I usually do when I need to feel grounded and “cleansed.”) Sometimes I sit on the riverside and watch the water rush over the rocks.  The sound is amazing.  It reminds me that water, though we can walk/swim in it, is a powerful force.  It cuts through rock.  It lets nothing stand in its way as it will always find a way through.  I try to remember this in my darkest of moments.  But when I go right, the serenity of the calm waters creates serenity within me.

At the river I’m able to absorb everything.  The trees, the animals, the birds, the insects, the cars passing far off in the distance…everything.  Its puts my life in perspective. It forces me to step back from my daily hell and be thankful for that day, that moment, that second.  To breath in the air, God’s breath and just be grounded and centered and at peace with myself. That’s what I need most.  I do yoga and meditate and pray at home but it’s never the same as when I’m out in nature.  There I feel like I belong to the world, to something bigger than myself, bigger than the 4 walls that I’m trapped in most of the time. I can sit and pray on whatever part of the river I’m at and tear of joy, sorrow, happiness, relief will just roll down my face. Maybe its my soul raining and pouring back into the river, into nature, into God. I don’t know. Sometimes I just turn on the music on my phone and drift away into the beauty of my surroundings.  Maybe nature has a lot to do with my want to move to Ireland. There I have NEVER felt closer to God! I crave that feeling like a drug.

It’s when I’m away from the river, from nature that the problems arise. With few exceptions, I am alone (realistically I’m alone most of the time.)  I have been blessed enough to have a mother who will standby me through anything, even when I don’t want her around.  I have a few close friends I can count on. But even with that being said, I feel so alone in my thoughts.  No one has walked in my shoes and no one I know has as much time to think as I do (and even if they did I can pretty much bet, most of them wouldn’t.) I still am overly analytical (I think that’s a trait I’ve had my whole life and I’m working on quieting it down.) I’m just not afraid to face who I am, flaws and all and I think most people either don’t have time or don’t want to.  I’ve made peace with my demons, tried to make amends where I can and now I try to focus on being the best person I can be and to live an authentic life in which I am true to myself and my creator.

I am no longer the peace keeper, willing to eat her feelings.  I won’t be a doormat to anyone. I want real people and real love and support in my life.  I’m just so done with drama and craziness and dysfunction and fake people.  What’s the point?! I get one life and I’m lucky enough to be getting a second chance to make whatever time I have left here the best both it and I can be.

I’m still not out of the “danger” zone yet.  My body and brain are still fighting tremendously hard to not just survive but to live.  There are days I wonder if my body will give out on me.  The Lyme has done permanent damage to my heart and brain. That I can’t change.  But I am as holistic and organic and chemical free as I can be to give my body every opportunity to heal itself and to keep it strong so I can keep fighting to get into remission with my chronic Lyme and get rid of these damn co infections.

I still want to be a part of the world.  I still want to have friends and family that love me.  I want to have my own family as soon as I can. Unfortunately, my change in personality and priorities has not gone over well with some family and a lot of “friends.” If someone is not healthy for me, then I just don’t allow them to be an active part of my life.  It’s not that I hate them, or are angry at them, I just can’t have toxic relationships in my life in at this point and I don’t want to either.  I want happiness just as bad as anyone else and its taken me a long time to realize it, but I deserve it just as much as anyone else too.  I’ll admit it does still hurt when that situation happens, maybe even more so now because I can feel more deeply and because they don’t accept the best version of me to date.  But no one said life was ever going to be easy or fair.

So stuck, I remain…for now, between what I want, what I need and my personal reality.  I know my number one priority needs to be my health.  If I’m dead, I won’t have any of the things I want from life.  Being sick and confined to the house or bed or couch is additionally hard.  I thought I’d be in remission by now, but now I have no idea when that will happen.  I was at a point last week, where I was ready to quit treatment. No death wish but how can you keep pushing yourself and putting yourself through hell with no light at the end of the tunnel.  I can do anything, survive anything, as long as I know “this too shall pass” or I have a time period to look forward to being better.  I’m going back to the doctor next week.  I’m incredibly anxious.  I want them to be able to give me hope, that I will be in remission within the next 6 months or a year (and to tell me that at most I only have one round left of Babesia treatment, the Lyme and Bartonella are much easier to deal with) but I’m terrified of them saying “we just don’t know” or “its all a waiting game to see how things go.”

These disease have taken over a decade from my life.  They have stolen so much from me and even though I’m coming through it a better person as a whole, I want my life back, not the one I had, but the one I want to create.  I want to live and not just exist.  I’m seizing every good day I have.  I’m doing my personal best every single day, even if it isn’t enough for anyone else, it the best I can do for me.

 

This entry was posted in alone, Antibiotics, Anxiety, Babesia, Babesiosis, bartonella, being ok, Being prepared, Blessed, chronic illness, chronic pain, Coinfections, Comfort, Death, desperate times, disappointed, Disheartened, Dying, emotional, emotions, Exhausted, Exhaustion, faking, faking being ok, Fighter, fighting back, finding your way, food, food matters, Freaks, friends, getting better, getting worse, go your own way, growing, growing stronger, healing, healng yourself, Hell, helping yourself, holistic, homeopathic, hope, I will get better!, I will win, illness, Immune problems, Immune system, Its not your fault, Journey, LBC, left brain, let go and let god, Life is unfair, LLMD, loneliness, Love, Lyme, lyme disease, Medical, Meditation, Misery, Mycoplasma, nature, obsessive compulsive disorder, OCD, oral medication, oral meds, poisonpeople, pretending, rain, rainstorms, Real People, reflection, religion, right brain, rivers, sick, sick individual, Sleep Deprivation, spiritual, Spiritualty, spoons, staying sane, steps, suicidal thoughts, Suicide, Support groups, Support\, Survival, TBD, TBDs, Team Lymestorm, Ten Millions Voices, thankful, thunderstorms, tickborne, tickborne diseases, ticks, Treatment, True love, Uncategorized, what life's about, withdrawl, yoga. Bookmark the permalink.

6 Responses to Stuck In Between

  1. These phases of treatment really suck. I hope you have relief soon, and will feel like you are on a path to remission.

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  2. chronically undiagnosed says:

    I resonate with everything you’ve written here. There are times when I have thought that Lyme is a profound spiritual cleansing journey. I too have returned to God as I understand God, which I also find so readily in nature. We (you and I and the rest of us who are going through this) are persevering. No one else except those with Lyme or chronic illness will truly understand our journey. One day we will emerge transformed. The process is already beginning.

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    • lymestorm says:

      Thank you for the comment! I agree completely. Lyme isolates you and you find out who your real family and friends are. No one gets it until they get it. You are forced to take everyday for what its worth, learning to celebrate life in a way you probably haven’t. All the “sick” days, make you appreciate any type of good things that come your way. I know I’m not the same persona at ALL since I started treatment. To date, I feel like I’m the best version of me I have ever been and I know I’m still changing and transforming:)

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  3. whitneyjanas says:

    A very inspiring post! The good thing about getting so sick and having to experience such deep misery is that it opens you up to seeing beauty just as deep, but it is a long, lonely journey! Just keep living your life right, keep feeding your spirit and it will get better! That’s what I’ve learned lately – the only time my treatments seem to actually work is when all my spiritual ducks are in a row! Hang in there!

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  4. lymestorm says:

    Thank you! I’m glad you found it inspirational:) That’s why I started this blog, to help others in anyway I can. It is indeed a long, lonely journey. I’m living true to myself and my creator as much as I can. Getting my ducks in a row (spiritually, mentally and physically) isn’t the problem…its keeping them that way:( Its a constant battle to keep them all aligned.

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