Guest Post from E- It Took Everything from Me

It took everything from me

“What is happening to me?” I wondered, as I stood in the shower. 
I was cold, quite dizzy and generally didn’t feel good. After a day at work, the hot shower warmed me up nicely. 
I drove to my church, where I was scheduled to spend the evening. I didn’t feel like eating anything, so I just got some tea. As the evening progressed, I felt worse and worse, and got so cold that I was shaking and shivering....with a coat on.

Finally, I had enough and went outside to my car, turned the heater on high and cried myself to sleep. Eventually a friend came out and found me, and drove me home.
This was the first time anything like that had happened to me, and I really didn’t know what to think of it. Over the next few months, I began to get more and more tired, until the point that I am now continually exhausted, and sometimes can only collapse in bed. I have agonizing pain, and have developed an intermittent stu-stutter, along with other cognitive difficulties. Conversations in groups have become increasingly difficult, and any productive school work at times seems nearly impossible. I have started falling regularly, and I am at times unable to control my balance well.

Though I never had many friendships before, the ones I did have seemed to die as I have become unable to do the things I used to do. But none of these are as bad as the ever present, crushing depression. I wake up every day, cussing that I woke up and that it is once again time to try to get up and move. I feel like I have been hit by a freight train.

A few years after I first got sick, I was diagnosed with Master’s (essentially lyme) disease. That at least explains what has been going on. But knowing hasn’t made things easier in general. When I, in passing conversation, mention to someone that I have Lyme disease, the general response is “okay.” There’s no concern on their face, no understanding in their mind, and no care in their soul. People, in general, just don’t care. However there are a few people that care about me, and for those I am incredibly grateful; it means more to me than they know.

This disease has taken everything from me. It took all of my energy. It took my ability to even have enjoyment. It took my emotions. It took my memory and my capability to think clearly. It even took my ability to have moving prayer time or serious devotions. It took me....and left me for dead, as a skeleton of my former self. A self that my friends, family and acquaintances don’t know, a self that I don’t know; a self that almost no-one knows. It took my youthful inspiration and replaced it with a wish for the sweet release of death every single day.

Even with the impressive amount that the bacteria has been able to accomplish, it hasn’t taken God from me, or me from Him. Nothing can separate those in Christ from his love for us. And I know that, and I firmly believe that. Nothing has escaped His attention, and I know that this immense suffering is for my good. It is helping me become the man God wants me to be; it may feel most of the time like a dagger in my heart, but I know that when I get better, if I get better, I’m going to be unstoppable. I’m going to be infinitely more compassionate towards those with depression, mental and physical disabilities, the hurting, the outcast, the unwanted and the untouchables of society. I’ll have a much greater understanding of what these people go through, and perhaps be able to help them. And for that I’m thankful.

-E

I asked E to write a post about his story for me to share on my blog, and I am impressed at how well he captured what he is going through. His brain fog and focus issues are a fair bit worse than mine (or so I think), and mine are fairly severe. For him to write this much and do such a coherent and clear job at writing, im super proud. 
One of the things he asked me after we began talking was "how do you describe what lyme has done to you"
I responded back with " I feel like I was murdered, then I never left my body."
Its fairly safe to say we both feel very dark now, which I for sure never felt like before lyme. Its hard to fight the crushing depression that has come on with lyme, the lyme takes over the body and the depression on top of it helps take over the brain and its thoughts. Together the two of us have more support to encourage the other through the dark times, which are more often than either of us would like to admit to anyone else.
Im sure that this will not be the last post from my friend that you will see posted on this blog, as he progresses with his treatment and his life and symptoms change im sure Ill be able to convince him to write a little more to share!
He started zithromax today, so I have a feeling he's not going to be feeling to great over the next few days. 

Oh Where has my Hamster Gone?

Anyone seen my hamster running around? I think he jumped off the wheel and just wandered away. Long vacation perhaps?
Anyway, brain fog has been present lately but not the worst it has been. Sudden sadness that comes spontaneously has also been showing itself  whole lot more than I appreciate.
It can happen at work, school, home, or with friends. It doesn't matter to my brain what I am doing or who I am with.

What causes this? ugh. I know, its one of those things that just is what it is for the time being. It is just so difficult to deal with life when sadness creeps up on me making me feel like crying and hiding. It makes me paranoid of the people around me, friends or not. The paranoia that everyone around me dislikes me or pretends to tolerate me just to be nice, is a rather taxing emotion. I like to tell myself it is just paranoia, but sometimes I don't know.

Work has risen back onto the stress spectrum once again. Every time I think something in my life is returning to normal-boom-wrong I am. I have found myself sticking up for another coworker who is, in my opinion, not entirely being treated as she should. Due to the paranoia, I can't tell if I am right or not. On top of that I find myself doing other peoples work so things don't get piled up. Whats worse, the slackers in the office are family members to the bosses. Naturally.
It will be a temporary issue, either someone sets them straight or I hand in my two weeks notice and walk on out the door. Its the stress factor that bothers me and causes me issues, not the work itself. I have not had to do any ridiculous amount of work to pickup for the slackers. I have however found myself annoyed by their corner cutting. but because its their family....its a waste trying to get the laziness resolved.

Needless to say, I find myself uncomfortable at work when it used to be my second home. For me its a big deal to be uncomfortable, I feel shut down and my brain just doesn't function a whole lot. With all the issues going on in my head and body...I have to have that connection where I am.
Often times at work or school I feel like its just me, other people are around but almost in another dimension. I just float through it all until I find myself back at home, alone in my bed.

I wish I never needed or wanted to leave my room. Even being around the people I love I just don't feel the bond I used to have, why? I used to love work, I loved doing well in school, and I loved going out with my friends. That was kinda my life for a long time but now, where did it go?

Ughh.
My heart rate is beginning to rise again. I can feel it. My fingers feel swollen sometimes especially in the tips. And my fitbit says my average heart rate is higher than it was last week.
This hasn't even been a stressful week! I have felt fairly well. Only a few sad teary moments. I have actually had a fair bit of energy to play around with and on top of that, minimal pain. Thats huge for me to have energy.
Hm. One day this will all be resolved and my body will function well enough for me to be a so called normal human.
Anyway, for now-

Dear Mr.Hamster,
If you get this post could you come home? I miss you making all the gears in my brain turn. I need that in my life.
Love, your old hamster wheel.

Standing in an Empty Room Full of People

Have you ever been talking to someone and thought” wait, the person in front of me is talking and I haven’t heard a single word.” Or maybe felt that you just don’t connect with certain people. That’s what life with my new brain has been. It doesn’t matter who I’m around or where on this earth I am,  I feel totally alone. Like a dark black hole of sadness yet desperation. Who could feel alone with a dozen or more people around? Why is this even possible? Why can’t anyone help me?
This, this has become my reality. I can’t totally escape it. The last few days have actually been much better and less anxious for me, smiles and laughing have happened. While I am grateful for it all, why can’t this just end?

Yes I have a chronic disease called Lyme. Yes it does cause damage to my body and beat down my immune system allowing opportunistic infections into my system. I get that, it’s not fun and games and not for the faint of heart. But I was chosen to learn from the experience, cool great. I can do all things through Christ who strengthens me, I wholly believe that. Hey I’ve been sick since January 26, 2011. Almost seven years ago and I’m still here, obviously I’ve done something right and I am here but by the grace of God. I’m not going to quit, I’m gonna fight. I’m gonna win. I may not win every single one of the battles that will be thrown at me but I will win the war. If I leave my house tomorrow and get hit by a bus, I won as far as I’m concerned. I never quit being me, I never quit being alive, if doesn’t matter if a bus or an illness kills me tomorrow-as long as I don’t choose to drop out of this fight I win.

Okay, now that I’ve said all that. Let’s be real.

Being sick is hard. Crying all the time is hard, trying to find positivity when the whole universe appears to be crashing down around you 24/7. No no, 24/7 isn’t an exaggeration, I have had many nightmares related to something to do with my health. Even then, some nights I don’t sleep. Again no exaggeration, full consciousness all night long and through the whole next day. It happens people
*and all the sick peolle say amen*

I have cried more tears than I ever felt possible. I have found more reasons to be afraid than I knew existed. I have felt more alone than ever, when I’m in a crowded room full of friends. I have taken more pills, supplements, oils, detox baths, you name it-with the end result being the world just crashing down faster. Why? Why can my body only find new ways to be unhappy and sick? All the time? I have done everything I can to fight and scratch just for a little bit more progress. At one point I was taking a supplement comparable to Xanax two or three times a day, in a high dose each time, just to function. The first dose was right after waking up, sometimes I didn’t even get that 5 seconds of twilight where the world was okay. It was straight to conciousness with a big fat side dish of depression and anxiety. This fortunately only last a few weeks, I found a homeopathic patch that calmed me down and I totally stopped the supplement. I have never reached normal, but I have gotten closer. I don’t even use the patch much these days, every so often I do pull the pack out of my nightstand and put one on. But even when I do, it’s not anywhere near what it was.
For this we praise Jesus. I’ve made it through the worst, I had faith I would make it. I still have faith that one day I will be 100% symptom free 24/7, especially in my sleep. God isn’t a magic genie, just because I prayed a request doesn’t mean I’m gonna get it right here right now.

Going through this has made me learn and appreciate even more, and I say even more very seriously, about what I’m life is important and what is optional. I learned early on in this disease that some things in life you need to enjoy to the fullest because the moment is unrepeatable and it really is worth something. Other things not so much, that shirt that may have been left on my floor and forgotten for a few weeks...no big deal. Believe it or not, a perfectly clean room, a perfect test score, a perfect exercise routine, scoring in sports-optional. It can all be replaced. You will always meet someone with a cleaner and more organized living space, you will meet someone with better test scores, and you can start exercising at any point in life and get gains worth bragging on. You just have to know what to do.
You will not ever be able to repeat learning to drive for the first time, personal conversations at 4:00am with your best friend, or that random person that came into your office and made your day that time. Those are the moments you have to fight for, you’ll always have a shirt to pickup off the floor. Best friends are few and far between. Family is few a far between. Pets that love you, few and far between.

Every so often, I’ll come home from school and my dog will be waiting for me on my bed. She doesn’t do it often but you know what? She’s not gonna be here forever and I won’t be going home and heading straight to my bedroom forever, I appreciate having a little surprise waiting for me. Like I said  it’s not often,  but it’s special to me.

Yet still, just me and the dog...no never. Try this on for size, me and the dog plus a black hole stopping me from being able to feel the moment that is happening. I consciously know what’s going on and know that I am living through a special moment, but I can’t feel it. I can’t feel it. I pray to God that this black hole will shrink and disappear sooner rather than later. I am taking things for depression yes. Things are improving, yes. But...not there yet.

Sometimes my mind will find things for me to be upset about...other times life throws me a curve ball that just seems like more than I can handle. This coming weekend my best friend, the one I said deserves a medal, is taking another visit to a college he would like to go to next year. Said college is several states away...far out of my reach. It’s his dream to go to this college because he loves the programs they have to offer. This weekend he is going to be talking to someone about potential scholarship options so he can afford the school.
I hate it, I hate it with all the hate my tired body can muster. He has been my absolute best friend I have ever had, and he’s gonna leave me...
I barely see him now because of his school and work schedule, at the beginning of the summer he is going on a trip for a month, so the amount of time I get to spend with him has been very little and is projected to stay very little. Even text messages are few and far between. I hate it.
My best friend has never known me as a healthy person, I was doing well when I met him and he knew me for a few months before he found out about my illness. I want to actually do fun things with him as a healthy person, but if he leaves that won’t happen. No I don’t think he’s gonna replace me, but life changes and in a few years the two of us could be living totally different lives than we had now.
I have been trying my best to strive to be happy and healthy so I can do fun normal people things with my friend but it’s seemingly impossible. He’s probably seen me cry more than he’s seen me laugh, he’s the best support system I could ask for. But I grow weary of only throwing the negative things into his life...I don’t want to be his personal black hole. If he leaves, we may never get to do the things I dream about.

I have been going rounds with myself about this. I want him to go to school and enjoy it, if he has a dream school that’s in his near grasp-that’s great! I just can’t take the loss...I thought being sick for so long had made me a stronger person. It has, but the problem is now I am recognize the worth of the things I do have...so when I see one of these things disappear is devastating. Not everyone has a best friend to support them when they are sick. He gets it, none of my other friends get the whole sick thing. He makes life better and more fun, the pain shrinks and the smiles grow, that’s what my best friend can do. Not everyone gets one of these.

On top of that, my best friend has had a lot of struggles lately. A lot, so he’s not so perky and happy, or even much like himself right now...and seemingly hasn’t been for a while now. That worries me the most, something is always stressing him out and it’s never anything small potatoes. It’s taken a toll on him and I really hate to see that, he’s not like me, he doesn’t talk about it when something isn’t right. So it’s hard for me and his other friends to figure out what’s going on, which further scares me. I do not want to see him stress himself into depression because he just burned his system up. I think that’s part of why I am where I am right now, I stressed and burnt out some things.  It’s a big fear of mine to see one of my close friends live through what I’ve lived through. I know he will come around he’s got this, I just want to still be around when it happens and not several states away.
If he goes, I’ll be back to having no one who gets it...I won’t be friendless but I will be without my brother.

In this crowded room I stand, alone as always.

When Time Stops

 I am back at the clinic for part of this week and I had a realization today. I was laying on the couch in the hotel room, thinking about all the homework I needed to get done and also how alone I have been feeling.
The TV was going but I was hardly watching it, I was so tired for most of this afternoon that I have been lost in space. Whenever I get like this I tend to just flip through my phone, flipping from one page to another. Opening an app then closing it, until I decide I need to do something better with my time. I realized that time had stopped, minutes felt like hours, I wasn't talking to anyone, TV was just noise, I didn't want to read, I couldn't do anything. I was so tired and foggy I couldn't make myself do any of my normal activities.
On top of that I realized I wasn't talking to anyone because time has not stopped for my friend, they are all either in school or at work. They don"t have the time to talk to me right now, too much life in the way. I haven't heard from my best friend since 6:30am yesterday, he hasn't seen any of my messages about whats going on with me here at the clinic, School and work dictate otherwise. Its sad for me, because he's one of the very few people I feel like I actually connect with, but he isn't sick-his life cant just stop because of me. Same with the rest of my friends and family.

Add that to the list of chronic disease symptoms that others just do not understand, being alone because the disease even infects our time. Our day, Our week, Our year.

I would so much rather have been at work today, joking around with my co workers and working on a new project I have been assigned to overhead. It would be easier to do my homework at home, in my own bed or on my own couch. The hotel room is nice and plenty comfortable, but it ain't home. You cannot beat being at home when you don't feel well. All other environments feel so cold and absent when the world is crashing down around you, only the chronically ill will understand what I just said. Its just not an option right now, I cant be home and honestly I don't feel well enough to be at home. Coming to see my doctor is what I have to do right now.

Today, after a whole morning and afternoon of trying to muster the energy and motivation, I finished reading my history book for class. Next I have to write a paper on it, but lets not think about that right now.
My doctor visits have been going very well, I can see progress in my future. I do have a little bit of peace, but too much brain fog to let me hold onto it.