The journey that is Lyme disease

I am not going to tell you the last three plus years have been easy.   I am not going to tell you that even at this point I am 100% and don’t feel so much emotion and feeling and even symptoms and patterns and the same cycles but less intense on a daily basis.   I am not going to tell you I don’t still get frustrated at times and still don’t ever seem to feel 100%.

in many ways I still feel I just play out the motions of my day continuing the same patterns and same cycle waiting for things to shift.

I have been through so much pain and so much emotion and so much of this place that I never seem to get out of. This place that you just feel trapped inside your own Body and seemingly can’t ever escape and never have a moment to yourself number of the moment of peace number of the moment I’m actually feeling good.

And to heal, you need to go to the deep things you put to the side.  The hard difficult times and difficult things you could not process and let go of at the time or feel because your mind wasn’t clear and you were doing everything you could just stay afloat and stay present and stay alive and stay here.

The journey that is Lyme Disease is a scary one and difficult one and that can be put to a halt if caught early enough, the problem is that happens so rare and so much suffering and so much pain, and so much chaos and sickness happens that should not.

The journey that is Lyme Disease is not an easy one, but in the end you become stronger and better and evolve into a different person.  You begin to have more faith in yourself and the universe.  You begin to break habits you think would have never been broken and you start to deal with things you never thought you would.  You become clear in your path, clear what you need to do and focus on yourself.

The journey that is Lyme Disease has not been an easy one for me and I am not still not 100% and every time I turn a corner and think I am there, another layer comes at me.  But the thing is I won’t stop until I am symptom free, feel better then I ever have in my life, living the life I want to live and have moved on 100% from Lyme and have it never come back.

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Living at 50%

I say 50% but the reality is the last four and half years I feel I have lived most of it at less then 50% the whole time.

has this been easy, no.  Has it been frustrating, absolutely.  Has it been a test of patience and will and faith and hope, absolutely.

In so many ways, I can’t believe most of the time what I have been through the last four and half years.  It is really super human in so many ways, and still I feel way more affected then I want to and in so many ways live my life at 50%.

I have driven 8 hours in a day like this, gone on dates, done treatments, wrote a book, made a website, had Long intellectual conversations, got over 500 points on scrabble, drove across the country and so on and so forth.

i have done so much at 50%, so affected, just imagine me at 100%.

 

 

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The Deepest Layer Of All

For however much I have gone out, done work, tried to live my life, nothing else has really mattered to me but feeling 100% all the time.  And as time has gone by and layers have been broken, I have been working towards and working towards and working towards that deepest layer of all.

At this point, I mean I have said this before, countless times it seems, that I am finally at the deepest layer in all of this.  I actually truly feel it, and part of it is that I don’t feel so much I am searching and worrying like I was constantly doing.  I feel I am finally in alignment with everything finally coming together.

It has definitely been a difficult journey.  A difficult journey of being dragged around it felt like not ever experiencing anything or feeling like I ever felt right and putting everything on hold and constantly, constantly waiting.

The deepest layer of all is probably the hardest but I know once it breaks, I will be set free.

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Avoidance

I will tell you this, Lyme Disease isn’t easy.  Actually it is extremely difficult and has been beyond difficult the last four and half years, in every way, shape or form you can think of.  For the most part, for four and half years, I have not felt right, good, pretty much ever.  I have learned to adapt.  I have learned to do things feeling this way, but I have lived for the last four and half years with this uncomfortable feeling in my body, waiting and waiting to feel right, feel part of the world, feel good.  The moments I have felt “good” or not to bad, where blinded by obliviousness and in many ways avoidance of not dealing with the root of what was going on.  A protection mode of sorts, a survival mode, a way you don’t live your life.  A way I had to live my life, had to put myself in a shell because of how weird I felt all the time, and to be honest still do.

You avoid to survive in a sense and then you get to a point where don’t want to avoid and you don’t want to just survive but want to thrive.

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The Ultimate Sacrifice

The last four and half years has definitely been what I call the ultimate sacrifice in every facet.  I have sacrificed everything I had, life in general and life itself.  It has truly been the ultimate sacrifice.

So many days I would sit on the couch or lay in bed and wait and wait and wait and do nothing, as my life flew by, waiting for everything to piece together, waiting to be able to fully experience life again.  Sacrificing it all.

The waiting, everything, everything, has been the ultimate sacrifice, hoping and waiting that I would be able to do everything I want and most of all feel the way I want.

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To My Parents

Dear Mom and Dad,

I know we have fought a lot of the last 3.5 years and I know it has not been easy on you or easy on me.  I know we both have always tried to come from a good place and I know it was hard for you and especially hard for me.  Wanting everyday to just wake up and feel right again, waiting and waiting and waiting and putting myself in a shell, as days went by, months went by, years went by.  Getting to a point where it just felt normal to feel the way I felt as I sped through the day, dictated by the day, by the routine, waiting for everything to just break.

It is 4.5 years of my life lost in a sense, feeling like I was never there and feeling like I have never been able to feel good or be me or be there with you.  Working everyday to get better and waiting and waiting to be able to really spend time with you in a comfortable way.

And my anger would come out, my frustration would come out because I felt so bad and was trying to hard to move my life forward, to most of all feel better.  Jumping to conclusions or anger as a protection mode.  Feeling sensitive to motions and movements and things that were said.

So often just trying to do things to get better, that you might not have understood, that were so hard for me, so challenging for me.  So much time lost, frustrated, angry, arguing, yelling and wasting the day away, the chaos of the day away.

All I have ever wanted, since the beginning of this, is to feel like I should all the time, not have to worry about it anymore and move out and live the life I want.  That’s all I have ever wanted.  I know that’s what you have wanted for me, but I wish we didn’t argue so much about it, and spend so much time frustrated and angry that didn’t help you or me.

I know so often you would see go out and get food, or go to Los Angeles, but this was part of my coping mechanism, part of me trying to live my life and move forward.  Part of me, trying to speed through the day, the day I felt I had never could control.

I learned to ignore how I have felt.  I learned to adapt and try to do things, while always trying to get rid of the symptoms I felt.  I think it is something you don’t quite understand or quite understand everything I have been through and how hard and sad and emotional it has been and how much of it was truly not me.

Most of the time I just wanted you to let me be because I was trying to get better and focus on my healing, not just for me but also for the both of you.

It is unfortunate, we can’t take back the last four and half years.  The past is the past, which can be difficult knowing that it is all time lost, but what we can do is move forward from here and make the best of it.  Make the best of our time together moving forward and know that things will only get better.

Love,

Your Son

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The Pieces and Parts of My Life

I don’t blog as much as I used too.  I used to blog almost on a daily basis, as it was part of my routine, part of my cycle, part of my healing, part of what I dragged my body to do.  I was constantly just putting together or trying to put together the pieces and parts of my life.

For the past 4.5 years I feel I have led a double life in many ways.  The person I was forming, the person always trying to forget how off I might feel or at the mercy of the bugs and the person who had a constant chaos and feeling that didn’t feel right inside of them.  A feeling that everything they were doing didn’t feel right and was not them.  A feeling that I was waiting for one day to wake up and break.  A feeling that everything I was doing was not me and I was playing out the motions waiting to break free and getting to that point where everything I did, everything I felt, everything that was happening was truly coming from me and felt good and I felt connected and whole.  Like my mind and body felt one thing but my actions came out a whole other way.

A lot of this blog, I would actually say most of this blog came from a place of just playing out the motions and not a place of me necessarily.  I would say that explains a lot of the last 4.5 years, in all honesty.  Playing out the motions of things waiting to break free and not have to worry or deal with this and anymore and feel like I am at the mercy of it all.

I learned for the past 4.5 years to almost numb myself and ignore what was always going on inside of me, and now I don’t really anymore, which is good and healing but also vulnerable.

I have been pretty emotional this week, not because of necessarily just my symptoms or how I have felt but because this week I have really felt the past four and half years, four and half years that has felt like it is lost, four and half years that feels like it never existed.  I have felt this to some extent before.  I would drag my body around and then all of sudden boom I would be like why did I do what I did or feel the past days or moments or hours of what I didn’t experience and then get a grip on things.  And when I was kind of oblivious, I would feel it more in the moment of trying to grab a thought and then it would come to me, but in many ways this was different.

This was different, not because I do still feel my symptoms and am not quite symptom free and where I want be, which is still hard and vulnerable and keeps me searching still, but because I am now 35 and when I started this blog I was 31 and had just moved from Los Angeles to Seattle, not knowing what was going on, and this blog was the beginning of my Lyme Journey.  I never thought it would have taken this long to get to this point and I am still dealing with things to some extent.  Awkwardly moving my body around and dragging around on a daily basis just always trying to get through the day, not ever really living but just trying to get through the day or when I felt more number to things and more happy or positive, allowing the chaos and anxiety to drag me through the day.  It is definitely not been the way somebody should live their life, let alone four and half years of their life.  It isn’t normal, but you get used to it.

But, this waking up I guess was different in the sense that I feel the constant dragging around disorientation isn’t as strong and that I can get more of grip on my decisions and things I do, and it has been quite emotional.  Especially emotional in the sense of everything with my family, whom I have lived with for over 3.5 years, almost four, and all the fights, and heartache and anger and frustration.  Essentially just ignoring or dealing with how I have felt, waiting for the hopes that one day I would not have to worry about that anymore and not get upset or have them get frustrated and actually be with them again.

It is interesting, over four and half years ago, right before things shifted, it was almost like I sensed this coming, this premonition that, my life was about to change and I was almost going to miss my parents, and I called them up with all of this anxiety, which I am sure was the beginning of my symptoms, but I almost felt it was more premonition.

And for the past four and half years, even though I lived with my parents for 3.5 plus of them, I have not felt I have been with my parents, or really for the most part with anybody or myself, and that’s what has made me emotional.  Finally seeing that, and feeling that and breaking free.

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Jason, Where did You Go?

You almost forget sometimes how much you have been through because as time goes on and as the harder stuff, the more challenging stuff, the discomfort slowly fades away more and more and you open more up to the world, it always seems like it didn’t exist.

A little over four years ago, I left Los Angeles, just disappeared one day, almost as if one day I existed in Los Angeles and the next day I didn’t.  Nobody really asked about me, especially has time went on and four years later, they still don’t at all.  They all just faded away really.

Lately, for the first time in the last four years plus, I can honestly say I am finally forming who I am again, the person I am, not the person I was as I am stronger and better for it.

I never really went away, I never really went anywhere, I have bene here the whole time, just hidden and blocked as if I didn’t exist, and now I am coming out of my shell and blossoming again.

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