Lady of Lyme
  • Blog
  • Shop
  • About
  • Products I Love
    • Supplements & Meds
    • Makeup & Skincare
    • Food & Diet
    • Apps & Organization
    • Gift Guides
  • Resources
    • Symptoms/Resources
    • Lyme Vocabulary
    • Printables
    • Books & Reading
  • Features
  • Testing
  • Contact
  • Treatment Info
    • DesBio Treatment Facts
    • My Treatments
    • Treatment Blog

Thief In The Night

5/27/2015

2 Comments

 
Do you ever wonder what the absence of something feels like? It's common for people to describe a symptom to others by using descriptive words to convey it: "My stomach ache feels like pins and needles with a dull ache akin to a pressure." "My headache is a throbbing feeling behind the eyes that pulses like something is hitting it with a hammer on the inside." etc.

We can feel other people's pain when they describe it to us so vividly. We can take those words and imagine what it must be like, if only for a moment. But what about the absence of pain? Can you really truly imagine what that might feel like?

I've spent a lot of time thinking of what it would be like to live without pain. And it's only then that I realize it's been so long since I've been free of it that I can't possibly imagine what it might be like. Words such as: peaceful, calm, blissful, they don't do it justice. That doesn't convey a feeling.

It's strange, isn't it... It's so easy to feel other people's pain, but yet we can't feel or even imagine relief for our own selves. I imagine the lack of any pain might scare me at first. I think if I was suddenly given that gift that I would panic, or be on standby for the storm to come that I feel sure was lurking close by. Even now on my better days I am keenly aware that it is only temporary, and I'm very in tune with the fact that sooner rather than later it would be back. The storm is lying in wait, and after years of living in this cycle it has robbed me. It's robbed all of us from the ability to imagine a life without it. It's silently placed a fear in our hearts that when we achieve it, it could so easily be taken away. The joy and euphoria of good moments are slowly chipped away by our minds, stealing little pieces like a thief in the night.

That what a chronic illness can do to it's victims. It goes after that fragment of the soul; the piece you have when you are a child and still inquisitive, naive, and look at the world like it's a big safe place full of wonder and enchantment. Somewhere along the way of growing up we lose that deep inside of us. But I believe it's still there as adults, hidden among all of life's baggage. And that's the part of our soul that makes us survivors when the bad times come. That's the part that keeps us going. It's the hope and wonderment of a life that can be lived carefree; free of being dictated by pills and schedules and dietary restrictions. It's the dreamer inside all of us that gets us through the rough patches.


I vow to take the bliss of a good day and hold on tightly. I vow to stop and take a moment to really experience it, absorb it, memorize it.  Every nuance of the day, every small way it makes me feel. I vow to breathe the moment in, let it envelop my soul & examine what that absence of pain is like…what that sensation really is. And then I vow to keep that moment locked away, clutched in my heart where no thief can take it away. Because that's what will make me a survivor; that's what will get me through the next wave of the storm that is lurking, just over the bend.

xoxo,
Christina

2 Comments

It's Always The Darkest Before Dawn

3/7/2015

17 Comments

 
"It is always the darkest before dawn" - Thomas Fuller

There are many things that a chronic illness can take from you. It can take your job, your ability to go to school or drive a car, it can even take away your favorite foods. The simple pleasures in life become out of reach, even mundane things like showering or reading a good book. But these are all things that you are warned about. Everyone tells you to expect these things, and so you do. You brace yourself for the impact of letting go of people & things that mean everything to you. You learn to adjust and adapt to a new normal, one where you don't get to follow your dreams, and one where you watch the world bustle around you in progress while you stand like a statue watching from afar. But there is something else that you can lose, and it's something that no one quite warns you about. 

No one tells you that if you aren't paying attention, then ever so slowly like a thief in the night you can lose the very essence of who you are. Suddenly you aren't just fighting for your health but also for your identity.


During the first 2 years of treatment I never lost my spark or my spunk. I was physically very far down but my soul was filled with joy and energy. I kept up with all my friends, I painted my nails and had spa days, I loved to get highlights and primp even though I just laid in bed. It made me feel good. I loved to faux online shop for clothes by putting things into my cart and never buying them, but just daydreaming about being well enough to have places to go wear all these wonderful outfits to. When I fell asleep at night I dozed off thinking of things I looked forward to that were out of reach like seeing fire works on a beach or having dinner with my friends again. This sense of hope and never losing myself is what made my days go by quickly despite the circumstances. I was still me. Every quirk that made me who I was stayed in tact, and no one tells you how absolutely crucial that is to being a fighter.

When I relapsed last year it took all of my joy with it. I'm not sure how it happened, but I looked around in October and realized that along with my health my happy was also gone. I wasn't smiling as much as I used to, I wasn't genuinely joyful over things, and I had less of a desire to do the things I loved. It really disheartened my soul to know that I had worked so hard and put so many grueling months into treatment & just when I felt life come back into me everything suddenly crumbled. It was an utter shock how quickly my health spiraled down out of my control, and to be honest I did not know that was possible. I felt like the people who relapsed were the people who slacked, or the people who weren't keeping up with supplements or diets, or maybe the people who didn't care. I never imagined that even when I was doing everything right it could still happen. I felt like a failure, I felt like I let everyone down around me, including and MOST importantly, myself. And somewhere in all of that is when I started to lose who I was.. ever so slowly.

When I say that I lost myself, it's more a sense of not being able to identify with anything. I can't think of many adjectives to describe who I am right now in this moment. I guess last year I would have said things like "good friend," but now I'm so busy doing numerous health related tasks or researching things that I don't have fuel left for that. I've been trying to force myself to connect with the world around me, but I simply can't. I usually don't have the energy or I'm battling pain, and in the moments where I'm free all I want to do is lie on my bed and have that moment of silence and peace. I choose that over connecting every time. I can't tell you the last time I logged on to any social media that wasn't advocacy based (lady of lyme related). 

It is so utterly bizarre to feel like I'm just not myself in any way shape or form. I'm indifferent to everything, excited about nothing, and bored with all the things I used to love. Crafting, writing, mentally challenging myself... none of that feels good.


This is my now. Not my forever, but my right now.

I know that I will find my happy again, I know this isn't permanent. I have a lot of faith that the soul sometimes needs to hit a low point in order to regenerate. Right now I have to stay focused on my tasks at hand and getting well. Every spare second I have is dedicated to research in some way shape or form. I am determined to get well, I will never stop educating myself & fighting to find a way. This relapse has thrown a lot of new hurdles at me, and every day is a new mystery of perplexing puzzles, but it only fuels me to figure it out. It doesn't matter how long it takes me to get there, as long as I get to the finish line.


If you're reading this & you are feeling a bit broken yourself, know you're not alone. It happens, and it's okay. As long as you remember to not let it defeat you or take your zest to keep fighting then it's healthy to take a moment and wave the white flag. With a chronic illness you are sick & managing pain every day for years on end, and that will wear on the strongest persons soul. You might feel like you're moving in slow motion, but all that matters is that you keep taking steps.

Xoxo,
Christina

Ps - If I haven't replied to you via email (my inbox is full), or replied to comments please know I plan to be back in action & hopefully with an update very shortly. This post itself took about 5 days to write up, so things are a bit slow to go but I promise I'll respond to every last email. 

17 Comments

Who Are You Thankful For?: A Tribute To My Parents

11/27/2014

2 Comments

 
Today is Thanksgiving. A day when we give thanks for everything that we are blessed with. For me, this isn't anything materialistic in nature. I wanted to take a moment and give thanks to the two people who have been my absolute life line: my parents.

On any given day I look into my mothers eyes and I see an immense amount of love, mixed with an immense amount of pain. It hurts her deeply to see me suffering when things get bad. I look into my fathers eyes & beyond his stoic and calm demeanor I see a lot of sadness when he is helpless in taking away my pain. My parents have given up their own lives to rotate their world entirely around getting me well for the better part of 3 years. They never wavered with their support and commitment... not for one moment. You would think after so long one of them would have cracked, or they would have grown tired of it all. But they don't ask for a break, in fact they can't fathom a break until I am well. I try to wrap my mind around how deep their love is for me, but I can't comprehend it. It's so much more than I can possibly understand. So many times during this journey I have broke down. It is a tough mental fight and some periods are tougher than others. I will admit that I cracked more times than I could count, but even in the absolute worst moments my parents stayed strong. Even when things were very grim, and I wasn't sure how I would make it through the next hour or the next day, they never worried. They remained calm and figured out a plan. I know that as long as I have them by my side there will never be an option to lose this fight. Not under their watch. 

When I am up at 3am sick and crying, they are up with me getting me whatever I need to ease the pain. When I need someone to talk to my mom would stay up with me past midnight just keeping me company or letting me vent. They are two of the most committed and loving parents I could possibly be blessed with. They won't ever give up on me, and they continually lift me up when I'm weak.

I'm thankful that they take so much time to cook me meals that fit my diet & taste buds. I'm thankful that no matter what new "out there" idea is presented for treatment they instantly are on board, ready to do absolutely anything to get me well, no questions asked. I'm thankful for how they pray with me & encourage me constantly to stay focused on God. I'm thankful that they care for my dog when I am too weak to do it myself, and they give her so much love. I'm thankful that they constantly research and read up on pertinent information so they understand every detail of my treatment (during times when my brain fog prevents me from doing it myself). I'm thankful for so much more than I could put into words, but their very love is what fuels me.

I would not have made it 1 step without my parents support and love. I would have surely given up by now. People think I'm so strong, but on my own I'm really not. It's they who are strong and pick me up and give me strength to fight when I'm all out of steam.

So here's to you mom & dad. You all are the greatest gift that I could have ever been blessed with. I'm thankful each and every day for your love, but especially today when I can reflect on the depth of what you do for me. I am nothing without your support and your guidance. It's been a long 3 years, but the silver lining is being able to spend this quality time with you both, learning love and patience which you model for me every day. As long as you two are by my side I know I can face anything. 

All that I am, and all that I hope to be I owe to you both. 

Xoxo,
Christina

Picture
2 Comments

I Am Thankful For Perspective

11/26/2014

0 Comments

 
Picture
“I had a terrible day.” We say it all the time. A fight with the boss, the stomach flu, traffic. That's what we describe as terrible, when nothing terrible is happening. A root canal, an IRS audit, coffee spilled on our clothes. But when the really terrible things happen, we start begging God to bring back the little horrors and take away this. It seems quaint now, doesn't it? The flood in the kitchen, the poison oak, the fight that leaves you shaking with rage. Would it have helped, if we could see then what else was coming? Would we have known that those were the best moments of our lives?  – GA

Perspective

So often we take for granted the things in our life that don’t happen. On any given day we lay our heads down on our pillow and recount all the things that occurred. How often are you saying thanks for the grace and mercy that you experienced that day?

There is always something to be thankful for. Always. Even on the toughest days I can be thankful that it wasn’t worst, because I know it could have been. I am always thankful for all the ways that my life is rich and full. I may be hurting, I may be really down and out, but today my family is all safe and most importantly they are all healthy. I can hug and kiss my dog who will give me endless amounts of snuggles and knows exactly when I need them the most. I will be grateful that I have the means to afford the supplements I need which keep me living and taking steps each day.

No one knows what tomorrow will bring. That’s the mystery of life… And that’s why I learned to be thankful for today, no matter how easy or hard it was. We can’t see the future coming until it delivers its biggest blows, and by then we are wishing for all of our yesterdays back. We desperately want to wake up from the nightmare and go back to the day where we spilled our coffee and thought it was the worst thing imaginable.

I now know to be thankful for a beautiful sunny day that I can walk outside because I experienced months just watching the seasons change outside my window from bed. I know that you need to love your family and appreciate the days you have with them, because in an instant they can be gone leaving you shattered and wishing for just 1 more Christmas, or 1 more Birthday together. I’ve felt the highs and I’ve felt the lows. In fact, sometimes it’s the lows that really put things into perspective. Because you know you never want to feel that kind of pain again, and you realize what true heartache and trials really are.

This Thanksgiving I am giving thanks for all the ways that I was shown mercy and saved from things I didn’t even know about. I am grateful for that silly coffee spill I had this morning, or the fact that I dropped everything I picked up today. I am grateful for the nail polish I smudged and the stain I got on my favorite blouse. Because now I see that if these were my biggest complaints of the day, then my day was not only a huge success, it was also an utter blessing. 

Xoxo,

Christina

0 Comments

I Am Not In Control

11/3/2014

1 Comment

 
I don't have full control of my life.

Those are the 7 scariest words for me to say out loud. My need for control & an understanding of situations is something that is engrained deep inside of me. From a very young age I wanted an answer for absolutely everything. When my parents taught me something I always countered with, "But why?" I needed to understand. When I got old enough to realize that the world is an unjust and unfair place it made me furious. I didn't grasp why horrible things had to happen to good people, or why some things like incurable diseases even existed. My need to right all the wrongs in the world made me want to be a lawyer (before I knew the cold hard truth of how the law works). I would walk around when I was 13 proudly proclaiming to my family that I would be a lawyer one day and I would tackle all the unfairness in the world. It wasn't until I took an internship at a law firm at the age of 17 that everything changed. I read case files and court documents and depositions of horrific assaults on women and realized that their assailant was still somehow found not guilty. I remember coming home and just crying uncontrollably when I got my first whiff of the harsh truth that I couldn't make all the wrongs into a right. I couldn't control the outcome. The bad guys don't always pay. I ditched my plans of law that instant because I knew my sensitive soul could not handle such sadness on a daily basis. But my need to understand why things happen and have control never went away.

I always liked to think that I had some bit of control with this disease. I kept my sanity by telling myself that although I am bedridden, if I REALLY wanted to go out and do something I could push myself. I told myself I had pushed through so much before so the option was always there. Having that lifeline, and talking myself into really believing that was true was my biggest downfall. Because it was all a great big facade. The truth of the matter is that when I moved home, frail and broken, the decisions were no longer mine. And coming to that realization meant that my lifeline which I depended on for so long was never actually there. For someone who is very independent like myself, learning to admit that my body controls everything has never gotten easier. I always assumed with time I would have peace, but I sit here 3 years later and I can tell you that it's not any easier to process the internal struggle and heartbreak that comes with having a soul that is so alive while being trapped in a body with limits. Strict limits. If my body wants to completely rebel on me then there isn't anything I can do to stop it. My body doesn't care if its my birthday or Christmas or any other special occasion. It doesn't care that I have somewhere important to be. It doesn't care how badly I want something. There is no moral heart here, just a body that is fighting its absolute hardest to survive each and every day against the trials of Lyme disease. And it's not in my control.

Some days I really get knocked down, and I have to respect that I am out of steam. I go and go and fight every day with the utmost strength that I can muster up. But at some point the tank runs dry and I have to take some time to be kind to my body and let it recharge. Believe me, like anyone I have moments when I want to give up so desperately. But I look at my parents who love me so much and I know I can't. I keep going not for my own self, but for the people who love me who are counting on me to recover. So because of that I have learned to face my fears and my resentment over the fact that I am not in control. I never was. In fact, I don't know if any of us ever really are. We like to think we have utter control of our lives and what happens next, but often times life happens first. I had big plans prior to getting diagnosed, and none of them included laying in a bed 24 hours a day. But life has a funny way of shaking you awake when you least expect it. So I continue on this journey, trying not to dwell on the fact that I won't always have an instant answer to everything. Maybe sometimes I won't ever get an answer at all. But every day that God blesses me with another day on this earth you can find me seizing the day and fighting my hardest, and I hope all of you reading this will do the same.

xoxo,
Christina


1 Comment

3 Year Anniversary.... of diagnosis

9/29/2014

9 Comments

 
As I sit here looking at my computer screen I have a lot of emotions all jumbled up in my head; gratitude, uncertainty, joy, disappointment, thankfulness. Today marks 3 years since my diagnosis. It strangely feels like it was just yesterday, because I can still feel all the range of thoughts that I went through. My immediate feeling was relief to have an answer after 5 years of searching through 100's of Doctors. My delayed reaction was fear and uncertainty as I started to question and investigate what exactly Lyme disease was. After that followed denial. I was in denial that this could possibly be my life, and that I would have to fight this battle that I read about on other peoples blogs. Lyme disease felt like it was bigger than me. Everyone said they had to quit school, give up their jobs, leave their friends, and I fought against all of that. I thought how unfair this disease was, and resented that I even got diagnosed. Many months passed with this mentality, and I was resistant to moving home. I didn't want to face the music. I didn't want to lose the people I loved the way I knew I would when this disease would make me bed bound. It just felt too surreal.

After fighting a long mental fight my body ultimately won when it gave up on me and I called my parents weeping and asking them to please come get me and take me home. This period began the feelings of exhaustion and feeling like a failure. I felt guilt, sadness and at times anger. Accepting this illness is a hard thing to do, and coming to terms with the new path for life was one that only happened for me because of my relationship with God. Once I began to understand that His plan for my life is the ultimate plan and that he is in control, things started to shift. I began to see the glass half full. I realized how lucky I was to be diagnosed and to have a Doctor who is so incredibly knowledgeable. I realized that each day I fought I was moving closer to healing, and that I just needed patience (something I was not used to). I realized that people exit our lives for a reason, and that once they served their purpose they phase out, and all we can do is look back fondly on what they taught us. I realized that although it was hard to give up my independence and move home with my parents I am so utterly grateful for this time I got to spend with them. Being a teenager I took that for granted, and as adults we don't really get to spend much time with our family because of work and life being chaotic. Being in my mid-twenties and spending these years with my parents is something I will be able to cherish forever (as corny as that sounds).

These 3 years since I was diagnosed I went on a journey both physically and mentally. I matured a lot in my understanding of the world, and I don't think that would have happened if I was living my life the way I was. I am a people-pleaser and I lived by catering to other people's needs. Forcing me to move home with an illness out of my control made me stop and focus on myself. It taught me patience, it taught me to take care of my own needs, and it brought me so much closer to God. There is no way that anyone is the same person after they fight a chronic illness, because it does change you. I believe it changes people for the better, because I found a strength in myself that I did not know existed. I always saw myself as someone who was weak, and this showed me that I am so much stronger than I ever imagined. And when you realize your own inner strength it takes away a lot of the fears in the world. You look at the world and think, "there is nothing I can't handle after this." And that's exactly how I feel as I sit here today. Nothing can scare or deter me from chasing after what I want. I refuse to see these 3 years as something to be sad about because of how hard it's been. It's all in the eye of the beholder, and how you view your battle is something that can make or break you.

So I am choosing to celebrate this milestone. Often times when you are sick you feel like until you are well and healed that you don't have anything to celebrate. And that is simply not true. Getting a diagnosis is incredibly tough, so if you have one then you already won the biggest prize of them all, because it means you can get your life back. With a diagnosis in your hands you can alter your life and have symptom relief to look forward to. How amazing is that? Yes, this journey is hard. Yes, this journey is long. No this journey is certainly not easy. But now I can fight for my life because I know what I am fighting against. And that is a blessing that deserves endless amounts of celebration.

Here's to 3 years, and I will fight for as many more as it takes. This disease might try to take my body, but it can not take my soul and will to reclaim the life that it stole.

xoxo,
Christina

9 Comments

An Open Letter: What Does It Take To Be An Advocate?

7/29/2014

0 Comments

 
Doing advocacy work is not for the faint of heart. There is so much more to this than just putting my face on something that says, "Hey pay attention to Lyme disease!" There is a component you need to be a good advocate and that's the ability to bare your heart. It's the ability to listen to the problems & gut wrenching stories of people around the world & try not to let it break you down, but instead inspire you to work harder. It's the hours upon hours spent trying to help others virtually by offering advice and suggestions, or locating them a Doctor. It's the joy you feel when your advice is helpful, but it's also the sorrow you feel when it wasn't enough.
That's the part which people forget. That's the part which wears me down.

I am an empath by nature. It's both a blessing and a curse. An empath takes on the emotions of people around them & soaks it all up. Other people's sadness becomes my sadness, and I have a hard time separating the two. Sometimes I need to take time for myself to recharge because it becomes too much. Being both an empath & an advocate is a combination that can wear down my soul because there are very few happy stories that that come around.

I think the hardest part of this job is realizing I can't help everyone. As much as I want to, I am just one individual who is fighting her own battle too. There is only so much of myself I can give, so I work to put out as much information as possible in hopes that it will be enough. I work to give my friendship to anyone who contacts me in hopes that they feel less alone. But what happens when it's not enough? I knew that what I had to give couldn't be enough to save everyone, and when that moment finally came I felt the heartbreak deeper than I could have imagined.

Someone reached out to me recently asking for help. She asked for more help than I could realistically give in my current situation. Her story pulled at my heart and I could feel the desperation in every word she wrote. So I did the next best thing and I offered other options & suggestions. I offered support, I offered to start a fundraiser, and I offered to make calls on her behalf to every LLMD possible to get her the care she requested. I racked my brain and sent her a wealth of information to arm her with what she needed to succeed. Anything I was physically able to do I did. Once our dialogue ended it seemed like it was on a positive note, and she had found many people who offered to give her the help I could not. I thought everything would be okay. So you can imagine my shock when I got word that very recently she took her own life. It came down the fact that she couldn't get the help she needed for her soul, and inevitably it was the only option she felt she had. When I got this news it felt like someone took my heart and crushed it. I couldn't believe the words my eyes were reading on the screen. Despite what many believe she had support; she had people across the country rallying for her and lending helping hands. But at the end of the day it wasn't enough. The pain won the mental battle.

That is the reality of this disease. You can go online and see all kinds of fun Instagram posts of perfectly curated gluten free oatmeal photographed in a ambient light. "Look how fun clean eating can be!" says the caption of the organic Quinoa in red pepper sauce. You can get on twitter and see quotes filled with hope and people talking about the yoga they just did which was SO rejuvenating. "Look at me, I'm up at 8am doing yoga I'm so zen." You can get on Facebook and see people putting only their best face forward when they talk about their lives and the amazing day they had. But that's not real. THIS is real. The pain is real. The depression is real. The unrelenting loss of hope and non stop heartache that drives people to take their lives is real... because the thought of living with this disease is too much to bear. In the digital age we only put the things out there which paint us in a favorable light. We like to show off the pretty things & hide the reality. But that isn't authentic. Being an advocate means showing what's REAL, because people need to see it. It's not always roses and rainbows hidden behind many layers of filters. I put my heart on my blog and I wear it on my sleeve because it's the genuine truth, and I pride myself on that. I want people to see me and realize they aren't alone, and someone else out there is hurting too who knows how they feel.


Being an advocate means not ever shying away from the cold hard facts. It means reaching out to those who are hurting and offering them a shoulder. It means admitting your downfalls and showing your weakness so that other people realize they aren't alone. It means speaking out for those who feel like they don't have a voice. It means being the unpopular opinion in a world that's so focused on being popular and well liked. And most importantly being an advocate means being selfless. Because this is a full time job, one that never rests.
So you have to ask yourself, do you have what it takes?

Being an advocate has been the biggest blessing while also being the biggest source of heartache. I don't think I could ever find the words to express my sadness, guilt and inadequacy that I feel right now. I know it will take time for me to realize I won't be able to save everyone, try as I may. I wish for nothing more than the ability to have the resources to take every lost soul and connect them to a vessel of hope somewhere. But that isn't realistic. The only thing I know I can do is be me, and keep trying day in and day out to be the best version of myself for those who seek guidance.

So for now I'm going to take a brief leave of absence to get my bearings and recharge. If I don't reply to emails or tweets that's why. Please know I love and care about all of you so much, and I know you fight this battle every day with the greatest courage. But sometimes an advocate has to rest & I now is the time I have to take care of myself.


God bless,
Christina

0 Comments

Bargaining With Pain

5/11/2014

0 Comments

 
This post originally appeared here. I write bi-weekly for the HealClick blog, and I wanted to share my latest post with you all below.

Pain; It’s such a subjective word. Everyone has a different threshold for it, and sometimes you don’t even realize your ability to handle pain until you’re being faced with it head on. Sometimes I take a step back and I am in awe that I go through my days with this pain that would’ve been intolerable to me five years ago. At the very beginning of this journey it was too much for me to bear, but slowly my body went into survival mode. I knew that I had to develop thicker skin if I was going to get through this. I knew that I had to raise my pain tolerance and it’s almost like my body did it as a second instinct for protection.

It’s funny isn’t it? How this perception of pain can change and our bodies can adapt to handle situations we never thought we were strong enough for. It leads me to ask, where does strength come from? 18-year-old Christina cried over a scuffed knee or the common cold. 22-year-old Christina had gallbladder surgery without a drop of pain medicine & not one single tear. And now at 25 I can honestly say most my tears are simply from sheer frustration. The pain doesn’t bring me to my knees; it’s the inability to stop it or understand it that drives me to break down in my weakest moments.

When it comes to pain I think anyone with a chronic illness learns to negotiate with his or her mind to get through it. “Dear body, if you can just let me get a break, one small tiny break to breathe and get my bearings then I can take on the rest tomorrow.” I’ve laid in bed rationalizing things like that so that it doesn’t consume me. Managing pain becomes a mind game. You can’t let yourself think too much about the facts. You can’t think about the fact that you don’t know when it will stop or else you’ll go mad. You can’t think about the fact that you have no control over it, or else it will take over you. You have to consciously bargain with yourself to only focus on the now, and take it hour-by-hour, day-by-day. It’s the only way to survive.

And when the pain does subside, if even for a moment, you relish it. And you think to yourself, “This I am okay with. If this pain stays at a 3 or a 4 like this I’ll be fine. Just please dear body don’t go back to a 10 again, not today, I can’t take it today.” And sometimes in those moments I think to myself how crazy it is that I am actually bargaining and agreeing to live with a pain on a scale of 4, because that to me almost feels normal. And truth be told the utter lack of pain sometimes feels like an impossible request. It seems like some kind of unattainable fantasy world that I used to live in which I can’t remember anymore. So I settle for the 4… I tell myself, like I have told myself for so many years, that this will be okay. I can get through the minute, the hour, the day on this 4. And when I lay my head down on my pillow at night, after a long day of negotiations, I say a prayer, close my eyes, and know the tomorrow I will have to start the hard bargaining all over again. You see, pain never rests, it never gives up the fight…and because of that neither will I.

xoxo,
Christina


0 Comments

Being Vulnerable & Speaking Your Truth - (A HealClick Blog Post)

4/7/2014

2 Comments

 
This article was originally published on the HealClick blog (click to be directed to the original page). I wanted to share it here as well. I write bi-weekly for HealClick, and there are many amazing posts on the site I highly recommend reading. 

I have an impeccable talent. To be tough as nails on the outside, no matter how I feel on the inside. I inherited it from my mom. She can always keep it together, and be so poised under any amount of pressure. I’ve always admired her strength, because its what gives me strength. Most parents would have crumbled by now seeing their daughter in half the pain I’ve gone through. But my mom has managed to be my rock, and she gave me the gusto to tackle any challenge I was handed. I have an amour cast around me that no one can see, but only I can feel. It’s my shield from the pains of the world, and it’s what gets me through my days.

Sometimes though, the world just seems to fall around you. Piece by piece things start to unravel, and this strength you harbor seems like a fleeting feeling. There are two things I believe in: 1. When it rains, it pours 2. After the storm, there is always a rainbow. The rainbow doesn’t always come as soon as you may want, but it always shows up. Some days can be unusually hard, whether its physical struggles or emotional struggles. On those days I know the best thing I could do would be to let my walls down and talk to the people who love me for support. This however is also the toughest thing to accomplish, and I’m sure many people can relate.

I struggle with desperately wanting people to understand what I’m going through, but never wanting anyone to pity me. Anything but that. I hated when I felt like a spectacle to people around me, looking at that strange girl they feel sorry for because life handed her a tough deck of cards. The truth is, I’m strong enough to handle the draw life might have gave me because it has made me the person I am today. I’ve gotten so used to handling the tough moments internally that when it comes time to discussing it openly I waver on this line between wanting understanding and trying to avoid pity. Sometimes I want to dial down the truth, but then I realize that if I don’t emphasize the hell of what Lyme disease does to a person, then no one would grasp the seriousness. If you are healthy you wouldn’t understand why I just hibernated for the last 2 days, or why I cancelled the last 4 dinners, or why I can’t physically move from the couch. Until you have walked a mile in my shoes, and at a young age had your health taken from you, then I would say don’t judge. However, since the world & people are incredibly judgmental I find myself having to explain the agony I experience daily, so someone, anyone, would get it. I just want people to want to understand. I yearn for the people I love to take a genuine interest and learn not to feel sorrow for me, but simply listen and understand.

I know I’m not perfect. I know that finding this balance when I communicate to others is always going to be hard. To be honest, even having to verbalize what Lyme does to me physically is tough. It’s hard to get the words out. I think when you say it out loud it puts you in a vulnerable place. Suddenly it’s very real, and you are serving it on a silver platter to someone who may or may not even acknowledge it. It doesn’t do anything positive for me personally to talk about my struggles. I do it so the people I care about can understand, and I do it for advocacy for everyone who doesn’t feel like they have a voice. This disease is tricky & there is a lot to it. When I got diagnosed myself I did not have the first clue how to wrap my mind around what it would entail. But through the years I’ve learned first hand the raw gritty truth. So I try… I try to somehow explain it & make myself an open book. I try to hold back the tears and the heartbreak when I have to explain to someone for the 100th time that I don’t know when I will be better, because I don’t have an answer for that. I try to put on a brave face when I have to re-live my hard moments in painstaking detail to bring an understanding of what it’s like to live with this misunderstood disease. I try, because it’s all that I can do. It’s all that any of us can do.

I realize that not everyone will care. It’s inevitable that some people won’t respond no matter how hard you try. Sometimes people are so wrapped up in the good of their life that it’s just not a priority to immerse themselves in the struggles of yours. And that’s okay. Because I know that if I simply try for honesty then I’m doing my part the best I can. Those who listen and become involved are the people I can count on for a lifetime to weather any storm. Those are the people who help me put my walls down and realize that showing my truth can be a good thing. And for that simple fact right there it all becomes worth it.

xoxo,
Christina

2 Comments

A Public Letter to Everyone who asks "Are you better now?"

1/25/2014

2 Comments

 
There is a question I know a lot of people have in their mind. They might ask me, but the answer is so long (on my end), that I usually don't answer in much detail. In fact, I'm sure this question pertains to a lot of you who are in a transition phase with this disease. The point where you are slowly starting to get better, but you still aren't quite back to your normal life just yet. The point where you can do more, so people start to ask you "Are you better now then?" or "So when are you moving back to your own place?"

It's a weird question to answer because to those who don't quite understand the daily workings of life with an illness it makes no sense to them, and I totally get that. After 2 years of being at home in treatment it's difficult to grasp why I am more active but not necessarily back to my old life. So I wanted to shed a bit of light on that question and answer that. Hopefully this can be helpful to some of you guys as well.

When I lived on my own I did everything for myself every single day. I would wake up at a decent hour, shower, have breakfast, take care of my dog, go to work, run errands, do my laundry, make lunch, cook dinner, clean up, go out with friends, etc. The list could go on and on. You know what I mean, all the normal stuff people do from 8am-10pm. Before I moved home I was doing these things but I was killing myself in the process. It took every ounce of energy and I would end up skipping out on important things like eating (I didn't have the energy to cook), or sleep (I wore myself out so much I was too much pain to sleep). I totally and completely was running on fumes, and when I moved home I crashed.

I became 100% dependent on my parents. I am not exaggerating when I say I spent 99.9% of my time in bed. I would get up to walk to the restroom and that's where it ended. My parents cooked for me, and brought the food to me in bed. They did my laundry, my mom washed my hair, they changed my bed sheets, they took care of my dog, they ran my errands, they basically were the only reason I had a life. I might have made it seem easy, but it wasn't. My parents were my absolute life line and basically all I did was lay there and just breathe.

As I have gotten a hair better this role has changed. I am much more active in general today than I was a year ago. But I have a secret for you all.. I can do all these "extra curricular" things because my parents still do my basics like doing my laundry, my sheets, and cook my meals. While I do eat dinner downstairs with my family once in a blue moon, I still have breakfast/lunch in bed, and they still take care of my dog. It helps me conserve my energy by them helping me out in those ways so that I can use my energy in places that bring me joy.

So you see, after 2 long years battling this illness I am using my "extra" energy I have now on doing things that make me finally happy, and I can do that because my parents still do the vital essential things for me to make that possible. If it wasn't for them I wouldn't remember to take my giant list of medicines at specific times, and I wouldn't get so many basic things accomplished. And because I still lean on them so much that is the big answer as to why I am not back in my normal life. I won't be able to have my "old" life back until I can complete every last task on my own with 0 assistance or need for rest breaks from 9am-9pm. I need to be able to do this and more before I try to branch out on my own. I need to be able to do this day in and day out for weeks without any setbacks before I will feel comfortable to take the next step. It honestly isn't worth pushing myself and relapsing into a horrible state again. I've been there and I refuse to do it again just to save face or save my ego.

The second reason, which is the obvious reason, is that I am not 100% health wise. My grandmothers intensely & emotionally draining passing really put me back in a big way health wise. I just could not handle the stress. At least my body couldn't. I thought I was handling it like a pro, and then a week later it was a giant crash throughout my whole body. This is definitely NOT a sign of a fully functioning person. Not to mention I still will have a few days where I am doing okay and then out of the blue I have a flare so intense that I am back to my bed bound self in the fetal position unmovable for a few days. It comes as quickly as it goes, and during those times I am more dependent than ever on my parents.

This scenario can go for anyone who has a caretaker, be it a spouse, a friend, a relative, etc. Whoever is helping you to function now is the reason why you are beating this disease. It feels so weird to not be this independent soul like I used to be, but in my heart I have lots of energy and lots of hope. I know where I am at now, and I can complain all day about how awful it is, but when I compare it to my lowest I was ever at it just makes me appreciate that I'm not there. Anywhere but THERE.

So friends, there is the answer. I do a lot more, but I do it because my parents pick up my pieces. I do it with many frequent and long
rests throughout the day. But one day soon enough I will do it without having a crutch and I will have my independence back that I miss so terribly. And for anyone else who feels the need to explain their status, I hope this post can provide insight to those who need it.

When you get diagnosed with a chronic illness you turn into a bit of a hermit. Life shifts to a new place where you just focus on getting through the day however possible. You try to get your medicines in, you try to choke your food down, and you save energy for 3 days to shower. When you slowly start to feel somewhat better those moments of clarity are such an amazing blessing, but it's a long road to being back to what people consider to be normal. My fuse is shorter and it burns out quicker. But with each day it's growing, and although the transition is slow it's one that I can see is surely happening.

xoxo,
Christina
2 Comments
<<Previous
Forward>>

    Enter your email address to subscribe to new posts:


    Follow @ladyoflyme


    Follow Lady Of Lyme (@ladyoflyme)

    10.2k Followers, 618 Following, 51 Posts - Follow (@ladyoflyme)


    Categories

    All
    Crohn's
    Educational Posts & Info
    Gift Guides
    Giveaways & FREE Resources
    Health/Life Updates
    Interviews & Features
    Lyme Awareness
    Quiz & Polls
    Reflective Thoughts
    Things About Me

    RSS Feed

    Archives

    March 2022
    March 2021
    January 2021
    December 2020
    September 2020
    July 2020
    June 2020
    April 2020
    November 2019
    October 2019
    September 2019
    July 2019
    June 2019
    May 2019
    April 2019
    February 2019
    November 2018
    October 2018
    September 2018
    August 2018
    July 2018
    June 2018
    April 2018
    March 2018
    January 2018
    December 2017
    November 2017
    October 2017
    August 2017
    July 2017
    June 2017
    May 2017
    April 2017
    March 2017
    January 2017
    December 2016
    November 2016
    October 2016
    September 2016
    August 2016
    July 2016
    June 2016
    May 2016
    April 2016
    March 2016
    January 2016
    December 2015
    October 2015
    September 2015
    August 2015
    July 2015
    June 2015
    May 2015
    March 2015
    January 2015
    December 2014
    November 2014
    September 2014
    August 2014
    July 2014
    June 2014
    May 2014
    April 2014
    February 2014
    January 2014
    December 2013
    November 2013
    October 2013
    September 2013
    August 2013
    July 2013
    June 2013
    May 2013
    April 2013
    March 2013
    February 2013
    January 2013
    December 2012
    November 2012
    October 2012
    September 2012
    August 2012
    July 2012
    June 2012
    May 2012
    March 2012
    January 2012
    December 2011
    November 2011

© 2011 Lady of Lyme™. All Rights Reserved.

Terms and Conditions  - Privacy Policy
Connect with me:
Facebook
Twitter
Contact   About   Email Me


Lady of Lyme is a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for sites to earn advertising fees by advertising and linking to amazon.com.