I haven’t been sleeping well again. And I haven’t been taking care of myself. I’m falling into old patterns and trying to stop them. I’m putting the needs/wants of others before my own health. I’m trying to establish and ENFORCE boundaries, which leaves me completely exhausted The Babesia, on and off treatment, is severely affecting me and my peace and joy and relationships.
Sleep deprivation is one of the worst things you can do for your body. Sleep is when your body rests and rejuvenates itself. My body isn’t doing that. Even when I do manage to sleep, it’s not restful sleep. Its full of nightmares and night terrors. These leave me waking up with a sense of guilt and “bad seed” inside of me. It’s a horrible feeling. I work so hard during my awake time to focus on being a better person, to heal, to be the me that was trapped inside for too long. I get to a point where I am there, in my moment of blissful joy and thankfulness and then sleep comes (or doesn’t.) Then I fall into the “pit.” It’s a nasty dark place that feeds on my insecurities, my body issues (yes, I am thin and muscular but due to the culture we live in and my previous binging/purging I still view myself very differently than the world does), my fears, my OCD, my anxiety and its so easy to get lost there. My tears only fuel the hunger.
I get so tired of people saying it must be great to be disabled and/or retired. I am 31 years old. Being disabled/retired at that age was not by my choice! I learn new things everyday (even just on Instagram) that were obvious signs of my disease that so many doctors missed and I get so angry because the “health care” system failed me and I am paying the consequences…not them and there’s not a fucking thing I can do about it! Being disabled is NOT fun! Ok, yes I don’t have to go to a specific “job” but my “job” how now has become learning to deal with a life threatening (actually 3) disease, finding money to support treatment and taking care of myself (which at the current moment I’m not doing so good at.) Yes I may post pictures on Instagram or Facebook. Its celebrating the good days that I have, when I can leave the house or even just get out of bed. I know that I will “pay” for things and that recuperation from an outing, requires a clear day after an outing.
I am trying to walk a tight rope, find a balance of what I can and can’t do. It’s a learning process. Yes, I cry (a lot) and still mourn things, but I’m trying to heal my brain-make new connections and be resourceful. I try to find new ways to do things I used to. It’s what works for ME that matters.
I want to do so many things for so many people, because that’s just my nature. I KNOW I can’t. It’s painful for me to say NO, its painful for me to leave situations that aren’t healthy for me; its painful to leave relationships. These things may or may not affect “normal” people but when your brain is sick and messed up and you have parasites/spirochetes/bacteria feeding off of your brain it makes everything worse. I look better than I did and year ago and physically I am doing much better overall. That doesn’t mean I still don’t have days where my body is just as bad. It was raining a couple of weeks ago and its was killing my body. I went from using a cane for the “just in case” my knees go out, to depending on it, to holding onto walls everywhere I went, to crutches. But very few see this because they are not here with me. So when you see me out and I have on make up (to hide the bags under eyes from not sleeping) and I’ve put drops in my eyes to clear up the redness and stop the burning and I’ve put on “real clothes” and done my hair, yes, its easy to say “you look so healthy” or “you don’t look sick” or “you must be better by now” but don’t for one second think that I’m not smiling through the pain and faking being well. Every girl (every person) wants to feel like they look good occasionally, you just have no idea what it took that person (especially a sick one) to look that way. Looks can be very deceiving!
My OCD is holding at its current state. It’s not getting better, those some days it does get worse. My anxiety is through the roof! I hate taking pills! I take so many as it is. Addiction comes at me from just about every angle in the gene pool (that doesn’t mean everyone in my family is an addict but each generation has had one and carries the gene.) Know one knows how hard it is for me to “medicate” when I need to. Yup, I might pop a pill but you have no idea how hard that decision was, even though it was probably a decision I should have made much sooner. I know that I need my medications that I take daily and my dosing meds. I avoid Ativan and Marinol as much as possible because I don’t want to become addicted (this thought never leaves my mind.) I try as much holistic stuff as I can. I practice yoga (even if it’s just the simple stuff) as much as I can, I try to stretch everyday (body permitting), I meditate, I pray. Music remains my saving grace. If you see my out, unless someone is talking to me, I have my ear buds on and something playing. Its become the only way I can go to the grocery store (most stores in general.) I have upped my therapy sessions to twice a week. Not because I want to, but because I NEED to. I’ve picked up a book on learning to play piano again to work on my hand eye coordination. I’ve started writing all my hundreds of quotes from my phone or Pintrest or anywhere else I have them. Its going to take me a long time, but for those who don’t know, I had to learn how to write all over again. Its something I had to learn all over again. I’m trying to stay as busy as I can to keep my anxieties at bay. I’ve even started relearning French which is surprisingly coming back easier than I thought it would.
So yes, I am attacking these disease with everything I have and I’m doing everything I can to heal and “fix” my brain. My therapist suggested that I start taking the Ativan and Marinol (Marinol is for pain control) more often to try to get things under control. Even if it’s just for a short while, I NEED it. I can’t keep going like I have been. My stress level is beyond what I can handle. My anxieties and OCD as well. I’m trying to enforce too many boundaries (I know I should start small and build up, but I need protection from the things that continue to hurt or hinder me.) I start dosing on Monday. I made myself a promise to commit to taking my meds around the clock like I’m supposed to (by my therapist’s recommendation and my doctor’s orders.) It does suck because I can’t drive “high” and have to plan when I can take my meds around times that I need to drive (aka therapy.) But I’m going to take better care of myself. It was easy when I could physically do things, but now that I can, it’s actually harder to restrain myself. (Side note: I hate being high! I hate not feeling like I’m in control of myself. I hate not being able to get in a car whenever I want, especially in the event of an emergency. Most people wouldn’t mind it and would welcome it, but not me. I want to better and in control of my emotions and mental state without the assistance of medications.)
I am terminating several friendships. It scares the living hell out of me because my “circle” keeps getting smaller. But theses friendships, even though I enjoy them are not healthy for me. It really breaks a large part of my heart. It makes me cry, often…ok all the time. I have true love for these people but they cause me pain, with little or no regard for me (especially knowing how sick I am.) I feel like I have no other choice. They know how sick I am and that this is not a short journey I’m on. May be they can’t handle that. May be their just assholes (although I really don’t believe that.) I just wished for honesty, trust and respect and since I’m not getting that and I can’t hold onto something that’s not being reciprocated, I have to let go, wish them the best and hope for the best for me.
I told my mom a couple of days ago (I was having a lot of brain and speech issues) that I thought my body was ready to start dosing. I think it can feel things starting to get out of control. I despise dosing and no matter how mentally prepared I think I am for it, something is always new or different or unexpected. But for the 1st time I AM READY! Monday can’t come soon enough! I know I will pretty much be bedridden and helpless for 3-7 days but may be that’s exactly what I need and my body needs. I have put my brain and body to the ultimate test and despite all its been through it still keeps going and fighting with me. I have learned that my soul, body and mind are one. I feel the connections for the first time in my life. Together we will beat this. We will win the Babesia and Bartonella war and we will beat Lyme into remission! We are one and unstoppable!
I want to address a meme that’s been going around on social media, comparing various diseases to cancer. We compare things to what we know. Unfortunately, pretty much everyone knows someone (or has had cancer.) I know my battle and my journey. I don’t know cancer and hopefully I never will. I think cancer has become the disease in which everything is compared. But I ask you this…next time you see someone who is sick (or you know is sick) don’t judge them! You don’t know there disease and what they’ve been through! You didn’t go through it with them. Everyone, sick or not, has their own journey. Don’t judge or compare it to yours because you have no idea what its taken them to get where they are and what they’ve been through.
Let me leave you with these few quotes:
“And if I could tell you one thing, it would be, you are never as broken as you think you are. Sure you have a couple of scars and a couple of bad memories, but then again…all great heroes do.”
“Do what you feel in your heart to be right – for you’ll be criticized anyway.” Eleanor Roosevelt
“I learned the hard way that I cannot always count on others to to respect my feelings, even if I respect theirs. Being a good person doesn’t guarantee that others will be good people too. You only have control over yourself and how you choose to be as a person. As for others, you can only choose to accept them or walk away.”
“Life is short, don’t waste time worrying about what other people think of you. You need to know how to be alone and not be defined by another person.” Oscar Wilde
And my new personal favorite…
“I was born to be stubborn, to be a little bit bitchy, to push people, to push myself. I was taught to never take life for granted, to live a little, to love with everything I had, to never give up, to believe in myself, but most of all, to fight for myself.”