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EBV – The Struggle Is Surreal

Melissa Villamizar December 13, 2015 Health, Illness, Postpartum No Comments
EBV – The Struggle Is Surreal

I feel like one of the reasons I was put on this Earth was to help people to find happiness and success in their lives. I enjoy sharing my life experiences when I know that others will gain strength through them. I’ve probably started a dozen blog posts in the past 2 years that I was just waiting on the happy ending before posting. Posts about how I had a baby and got my body back, how I’m training my ass off, and about how I was sick but I overcame it. Unfortunately, these things haven’t happened yet, and it makes me feel like a failure and a bad role model.

I have something that’s been weighing on me, quite literally, for quite some time now. I’ve been struggling pretty intensely for the past year and a half with Epstein Barr Virus (EBV). And since I’m well past the “dormant” phases, I’m also suffering from Chronic Fatigue Syndrome (CFS), (also known as Myalgic Encephalomyelitis (ME) but most appropriately as Systemic Exertion Intolerance Disease (SEID)) and Fibromyalgia. It turns out I’ve probably had EBV for 15+ years (since I had mono as a child) but never knew it until recently, when things got bad.

But You Look Healthy
A few months after the birth of my son, I started to notice constant nausea and pain in my body that was like nothing I’d ever experienced before. I’ll spare you all the details. I figured it could be a number of things…exhaustion from working two, er, make that three jobs not including being a Mommy, having a newborn, breastfeeding 24/7, not sleeping for more than 90 minutes at a time, but with every solution I came up with for those things, the pain just got worse and worse. Despite my lab work being “perfect”, I knew something was not right.

Denial
I haven’t really talked about it much for several reasons. Part of me is in denial that this is really happening, and the other part of me knows it’s real and is hopeful that it will be over soon, and I won’t have to worry about it. This is a strange space for me, I have never before put a blog post together about something that’s beating me before I’ve overcome it. Probably because I really don’t want to put myself out there, in this vulnerable position. I fear that if I tell this story, people will see me as weak, or unhealthy, two things that I spend every waking moment of my life trying NOT to be. That and—let’s be honest—I’m not all that great at accepting help from other people. I also do not want to admit that I am not well. If I put this blog post out there, I’m admitting to myself and the world that this is true, which I’m not sure I’m ready for. I don’t want to have to answer a ton of questions because truthfully, I don’t have the answers. On the other hand, if I’m not open and honest, I’m doing a huge disservice to the people I care most about and want to be a role model to. Not only that but at this point, I feel like I’ve been keeping a secret that’s actually hindering my healing process. It’s time to move forward, as difficult as the process ahead might be.

I Can’t Seem To Fix It
I have a positive attitude most of the time, but sometimes I feel like it’s getting harder and harder to hold on to. I don’t understand how this could possibly be happening. I’d rather it not be true, and I’ve tried so many things to “get better”, from weekly nutritive IVs, rest, diet changes, and more, and I’m just not there. Lately there have been so many reminders that God is in control and I’m working hard to process that concept. That’s a different blog post altogether. I will say, though, that although I am sometimes confused by my relationship with God, I believe in Him and in the power of prayer.

When I was in labor with my son, I didn’t want anyone to know because I didn’t want to feel “pressured”. I would have flipped if my husband had received a text message like “is he here yet?” kind of thing. But in hindsight, I realize that people wanted to know when I was in labor so that they could offer prayer and support, not pressure. What can I say, hindsight is 20/20. :) That said, there was a point in my delivery where I felt a shift in my mindset and I felt prayers from people. I felt His presence with me. I don’t feel like it was me that got through the experience of a natural, drug-free childbirth. It was my team, prayer, and Him that brought my son into this world. A power much greater than me, that’s for sure.

It’s very difficult for me to reach out for help. The normal “me” is positive, happy and has it all together. But the birth of my son reminds me that I cannot do everything on my own. It is with this knowledge that I open myself up, in the midst of my struggle, when I really, REALLY don’t want to. I’ve talked about this in pieces to some close friends and family members, but I have a hard time explaining what’s going on. For some reason I feel embarrassed by it, and can’t even look people in the eye when discussing it. I get the feeling from my friends and family that they aren’t sure how to help. Nor do I. But now I’m starting to feel like the answer might be in prayer. I hope that I will find renewed strength in being honest and vulnerable.

What It’s Like — In My Body and In My Head
I started this particular post the Saturday after Thanksgiving. I was in bed all day with a pain I can only describe as unbearable. In silent tears most of the day, with my phone in one had, researching remedies and reading things from support groups. I decided to write about my journey, as it helps me to process things. But I haven’t wanted to post it. And even today, as I read through it, I find myself editing it, taking out the “hard” parts, once again. Because maybe, just maybe, I’ll wake up tomorrow and this will all be over.

I try to ignore the pain and most of the time, and with the knowledge I’ve gained in the last 7 months, I can. I guess that’s part of what makes it so difficult. One day I’m okay and another, I physically cannot get out of bed because of the unbearable pain that I can’t really explain, GI distress and nausea. The pain is so real and so intense, and it’s extremely depressing. I lay there and I wonder what the rest of my life will be like. Who am I if I am not the bubbly, energetic, fit athlete I’ve come to identity with? Who is this person lying in bed? I have not wanted to talk about this with my family and friends because if I don’t know how to explain what’s happening, and they haven’t experienced it themselves, how could they possibly understand?

Most people don’t know what Epstein Barr is, and when they hear “Chronic Fatigue Syndrome”, they tell me to rest. They tell me it’s probably because I “do so much.” But here’s the thing… I don’t need a nap, and resting doesn’t prevent these flare-ups. And don’t get me started with “Oh I’m tired too, I must have Chronic Fatigue Syndrome.” I will literally drop kick you. Thank goodness it’s been renamed, but people still unfortunately are more familiar with Chronic Fatigue Syndrome than Systemic Exertion Intolerance Disease. Anyone who has this knows that the name “Chronic Fatigue Syndrome” is a bunch of bullshit. Pardon my French.

My “Recovery”
I’m told there’s no cure for EBV and the other super-fun related diseases/disorders I’ve seemed to collect, but on the other hand, I know people who have in fact “recovered” from it. I can see myself in the future, and I know I’m well, but I just don’t know how to get there. My Type A personality wants to know three things.

1: What caused this?
2. What I need to do to recover?
3. How long this is going to last?

Wouldn’t that be nice.

I’ve been getting nutritive IVs for the past 7 months and they have definitely helped. I’ve tweaked my diet even more, rest when I need to, etc. But anytime I catch a cold, try to exercise, miss any sleep etc., it takes me about 6 weeks to recover. I’ve tried to be careful after my recent surgery but I dropped the ball for a few days nutritionally and I can guarantee you it played a part in my recent flare-up. Lesson learned.

Going Out On a Scary, Scary Limb
If you’d like more information on EBV, SEID and Fibro, here is a great article. It broke me down, but gave me hope. I’m telling my story in hopes that I will help others with this as well and that my honesty will help me in the next phase of this journey. Please don’t feel bad for me, that’s not what I need. Just know that I’m not an unfit, lazy Trainer. :) Not that anyone’s said that, it’s just how I fear others may see me. Please provide me grace during this time in my life.

“Lord Father, I’m going out on a limb and exposing myself in ways that make me extremely uncomfortable. I also have an immense amount of guilt for praying to be healed when there are people that need it more than I. Please put them first. Please help me find strength and freedom in truth, power in knowledge and the drive to not give up, with your help. I know deep down that you’re in control, as difficult as that is to grasp sometimes. Your plan is bigger than mine. I don’t understand your plan, but I understand it’s happening for a greater purpose. I pray for a sign that everything’s going to be okay. I can’t seem to do this on my own. Please help me heal. Thank you for hearing my prayers. In Jesus’ name, Amen.”

I hope that this reaches others suffering with EBV, CFS, Fibro, etc. I hope that this connects us, we can one day share success stories and put all this behind us!

Peace, love, and Faith,

Melissa

 

Great article on Epstein-Barr Virus / CFS / Fibromyalgia
http://goop.com/the-medical-medium-and-whats-potentially-at-the-root-of-medical-mysteries/

CFS / ME / SEID
http://www.npr.org/sections/health-shots/2015/02/11/385465667/panel-says-chronic-fatigue-syndrome-is-a-disease-and-renames-it
http://www.uptodate.com/contents/chronic-fatigue-syndrome-systemic-exertion-intolerance-disease-beyond-the-basics

Fibromyalgia
http://www.uptodate.com/contents/fibromyalgia-beyond-the-basics?source=see_link

 

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