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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
Becky Smith link
3/7/2015 02:17:03 am

I needed this one, this morning, thank you. I wish I had encouraging words.....but hang in there because you are not alone too. :)

Reply
Christina
3/11/2015 04:27:01 pm

Thank you Becky, we are in this together, and we shall beat it!

Reply
Kathy
3/7/2015 06:34:31 am

I too needed to hear this -thank you so much for sharing so honestly about your struggles. I am newly diagnosed and just starting treatment, but believe I've had Lyme for almost 30 years. Keep shining a light on the darkness -we are all in this together!

Reply
Christina
3/11/2015 04:29:40 pm

Kathy, it means a lot for you to say that, thank you! There really is a sense of solidarity to know you aren't alone in this. We backing down from this fight, and together we are stronger

Reply
Dan
3/7/2015 12:18:24 pm

You are certainly not alone in this. I am glad I stumbled upon your blog last night. I am taking advantage of your wonderful supplement list as we speak. I've suffered from Lyme, it's co-infections, Celiac, parasites, and god knows what else for 5 years now myself and I know all too well what "depersonalization" feels like. My brain will just leave for up to 6 month periods at a time. My girlfriend and I pretty much call it Jeckyl/Hyde. When I am Jeckyl, I am depressed, uncreative, lethargic, and honestly, I have suicidal thoughts. It's as you say, you lose the person you know you are. Recently, 1 month ago, my brain has come back to me, and I feel like myself again. I am social, don't hide from friends, and creative as ever. It is incredibly scary to go through because I don't know when my personality will begin to fade again. I am convinced this has to do with either Bartonella, parasitic infections untreated, or severe hormonal imbalances. I am rather malnourished so it's not surprising.

Anyway, I just wanted to share with you because you posted this recently and you have someone who knows EXACTLY what it's like. Hang in there, it will likely get better if you do your best, continue researching, and trying new things that work for your body. It's a long road for all of us Lyme warriors, but thanks to the social networks online and the vast amount of information people like yourself are publishing, there is hope.

Reply
Christina
3/11/2015 04:35:19 pm

Dan,
Thank you for reaching out! I'm sorry that you have to know what this feels like yourself, but you were quite spot on with describing it. It definitely feels like it's something that is out of our control, and I think you are spot on with it being one of the above (Bart, parasites etc). I'm really glad to hear that things are looking up in that regard, and that makes me hopeful to hear. It really is a bit like a pendulum, some symptoms will fade out and come back in incredibly randomly. It will be a wonderful day when they leave for GOOD.
Thanks again for your encouragement, and it's nice to meet a fellow fighter too!

Reply
Whitney
3/9/2015 04:47:39 am

Same thing happened to me - I fought and fought with a smile on my face and then got better! ...only to relapse and never really pick up the pieces of how much that crushed me. I think it's just the process we have to go through for whatever strange reason. Maybe we need to shed our old selves to become something better through all of this - who knows?

I think it's just hard to be our old selves when we can't unknow or unsee all we've experienced. We can't help but change, but it's hard to form a new identity from the confines of your home. Stay strong!

Reply
Christina
3/11/2015 04:30:54 pm

Whitney, you said it perfectly! I really do believe it is a process to be able to fully let go and shed the old self and then rebuild a new identity of sorts. It's certainly something that changes you, but in the end I believe it will only make us stronger. Thank you for your encouragement, I really needed it!

Reply
Mary Sue Humphries
4/8/2015 09:10:56 am

Hi Christina ~ I'm sorry I've not been a good communicator but just want you to know I think of you often and of course am praying. I cannot believe the length of time you've been afflicted with this. I have heard of Lyme Disease, but before knowing you I thought it was something you get over quickly. It is wonderful that you've been able to find others who have this so you can help each other. Keep on keeping up and I'll be a better correspond-er in the future. We don't see your Dad walking the dog any more, but then it's been a very cold winter. We love you.. Mary Sue Humphries

Reply
Christina
5/19/2015 05:00:44 pm

Hi there Mary Sue, thank you so much for this note & your prayers really do mean so much. Dad doesn't take the dogs as far lately since Dixie got older, but I will let them know you popped by here :) Thank you again and please don't feel like you have to apologize, before I was diagnosed I had absolutely no idea what this disease entailed. Your continued support means a lot
-Christina

Reply
Mary Sue Humphries
6/5/2015 04:57:24 am

Hi Christina - just popping in to say hello. We'll be planning vacations soon, which make me tired to think of. Camper is in the shop being looked at and for any required maintenance before we leave. Wyoming will be a likely vacation spot since our son lives there. He had a power saw accident on the 3rd (Weds) and is just very very lucky the ankle's large nerve and most of the ligament was not damaged. Phew. Luckly also his 3 children are of age to be able to help while his wife is working. We're enjoying summer again as John can get back to golfing and I can get out to walk. Very necessary at our age. You take care and know that we love you and are praying. And stay cool!! ☺

Christina
7/10/2015 08:04:20 am

Hi Mary Sue! How was your vacation? I hope that your son is doing better now and recovering after his accident. The summer time is so nice, especially in the evenings when it is a bit cooler and time can be spent outdoors! It's been quite rainy here the last 2 weeks, I hope you all had a nice dry vacation! :)

Tori Venable link
6/1/2015 09:12:37 am

Hello! I just started reading your blog this summer and I wanted to let you know how helpful and touching this post was. I have been struggling with my health for my whole life as I have had Lyme since I was 5 but the passed year has been especially difficult. Due to some severe neurological symptoms I have had to leave school, stop driving, quit my job and live at home with my parents without much of a social or recreational life. Even though all of that has been hard to lose, I think you put it really well by saying that "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." I don't know when the last time I felt like myself was. I hope you are doing better and you are finding ways to recapture the person you used to be. I look forward to reading more about your journey. Thank you for putting into words the way I have been feeling and making me feel less alone during this confusing time.

Reply
Christina
6/26/2015 10:15:54 am

Hi Tori! Thank you for your incredibly kind words, and I am SO happy that we got to connect on twitter as well! It is truly tough when your active life is taken away piece by piece and you are left to rely helplessly on your parents. I share so much of those same feelings, especially being young and wanting so badly to take on the world. I am always here to talk if you ever need someone

Reply
Candice
7/10/2015 02:39:34 pm

This fascinating issue of "identity" is not discussed nearly enough, especially around those with either contracted illness or congenital conditions. Thanks you Christina.

I guess we are so busy dealing with our health and daily tasks that the luxury of what this does to us psychologically seems far down on the list.

I've been ill with Lyme for over 25 years, with ups and downs like most chronic patients. At 67, I consider myself one of the "lucky ones." I have more good days than bad. I have made peace with all that has unfolded in my life. I see clearly that life is a gift, no matter what.

I wish everyone who reads this the very best.

Reply
Christina
7/18/2015 03:27:04 pm

Thank you for stopping by with such kind words Candice! It really is true that once you make peace with the situation it changes everything. Your attitude of looking at like as a wonderful gift no matter what is so wonderful to hear, and this was a great reminder for me today to read it :)

Reply
[email protected]
3/8/2018 02:05:53 pm

My "SEA CAT"..........WAS..... IS........and always WILL BE....!!!

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