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. 

Rough and Shaky

Pull it Together
Another rough day today. I think I wanted to jump right out of my skin, just right on out of it. I slept in late on purpose to get as much rest as possible. I woke up the same as I went to bed last night. I didn’t want to deal with it, I hate feeling sad and lonely. Once I got moving for real this morning I went straight to doing homework, I had to do something to keep my brain distracted. It took a while before I could muster up the real energy I needed to get moving and get out of bed for more than a few minutes. Once the homework was out of the way I still had to keep moving for survival. So I took my Volvo on an adventure. I got my haircut, had the emissions checked (PASSED!), and then we returned home.
The whole rest of the afternoon consisted of me taking apart the Volvo and working on some things. I didn’t have the energy to be outside all day but I made it happen. I tried to stopping and coming inside but I was only inside a few minutes before I realized I couldn’t stop. I needed to have something to distract my mind and keep my hands working. In other words I needed to burn every bit of energy in my system so my brain had no more to run wild with. Working on the car works for me right now because I can physically do the work it needs but it requires a little concentration and brain power which keeps me in a slightly better place than I would be otherwise. Hey it even gets me outside too, during the winter time I am an inside being. I don’t do the cold. Not at all. So for now this system works,

I had some friends over this evening, also to keep me distracted after dark when I could no longer burn energy with the car(it’s really not that broken). We played clue. I don’t play board games often, turns out those require focus and brain power with a side of memory. Dang, fresh out of those.
I am probably one of the worst people to play with, or at least in this current state. In Clue you have to remember the other players characters names....yea I can’t do that. Mr green, Sargent plum, orchids, I don’t know but every time I had to take my turn and pretend I knew what was happening I would look at the friend I wanted to accuse and say-so who are you?
It really was fun to play, but it made me feel lost and stupid. I accomplished my goal of not being alone and socializing while also keeping my brain distracted. I enjoyed it. I promise. I think..I don’t remember much of what happened, I was a space cadet. Lost in space searching my brain for a place not infected with cobwebs.
While everyone else was playing the game or talking I was trying to figure it who was who.

Eventually the games ended and we only had one other person here. It was nice, I was tired but I had someone to socialize with for a little bit until I was ready to check in for the night.
None of my close friends came, it was more so my sisters crowd. Nothing wrong with that but when all my friends had something else to do it made me self conscious a bit. I have the paranoia of why can’t I be the one they are busy with? Why am I always the one searching out for one of my friends, never the one that gets chosen. In other words, I’m the first to be needed if someone wants something but last to be picked for a get together. I may even be wrong and I can’t see it, I know I’m paranoid. These are some of the thoughts that haunt me.

Last week my doctor told me I was one of his difficult cases. At the clinic I see people with canes, walkers, and wheelchairs-those are supposed to be the difficult ones. I can walk, I work part time, school full time, have a social life, and have two semi demanding hobbies. I am not perfect and awesome at all of these things, my energy does waver and my progress with these things can suffer. But I don’t consider myself one of the more difficult ones. It was just a tad unsettling, I’ve been in treatment for years and I can see how some people are way better than I am at this point. My symptoms are just very clingy, I have never had a perfect 0 on the pain scale of a perfect 10 on the energy scale, it just doesn’t happen for me. I just suck at sitting down and not being productive, I have to keep swimming or I feel useless.
I am hoping that this last visit to the clinic will be a big turnaround. It always takes me a few days to recover from traveling home from the clinic and starting the new remedies. I know I am in the beginning of the detox period where I’ll feel funky for a while then one day I’ll wake up and feel like a cloud was lifted. I just have to wait for that day.

I know I am making progress. I see it in my bloodwork and in my skin even. I’ve been told I look better than I used to.
Before started at the clinic two years ago my skin had started taking on a pale purple complexion. Those days are gone. My face looks human again, some days I don’t even have big purple circle under my eyes. I know these all mean positive things and my face does usually reflect how I feel. Unfortunately very few people actually pay much attention to how I look. People notice that I didn’t brush my hair but rarely does anyone notice I’m pale or zoned out. Funny how that is....vanity is obvious but whose going to notice if I’m present in the moment.

I have officially rambled for a whole post. I think I’ve been typing for 45 minutes now....I don’t even remember what I started this post off with. Another goal accomplished, I think I have finally burned my energy candle for the day and I can go to sleep
*sigh*

I Would Like to Ask for Something

As you all have seen I follow many blogs, at some point I think I've mentioned most of them. A few months ago I posted about one blog in particular, Ticks and Trust. This blog is written by a Canadian mom who also battles Lyme disease and several co-infections. Several years ago her son Parker was also bitten. Shannon has since been able to better than when she had a full blown set of infections constantly. Parker however has not been able to become assymptomatic. He reached remission once, but the pain never fully went away. Now he is doing worse and nothing seems to be making him well.

The faith and confidance in of this family has been challenged so hard. I think many of the people who read my blog understand what it's like to he chronically ill because most of them probably are. But this family, nearly all of them have been Lyme positive at some point. Nearly all of them have been through Lyme treatment. They have all had to deal with trying to find a doctor to treat them, which has turned into multiple doctors and multiple treatments. Shannon's oldest and youngest are doing well how, but her middle child Parker only knows suffering at this point.

I would like to ask for prayers for the Goertzen family. I know what it's like to be the sick kid whose just held back by everything, thinking about other kids like Parker who are much worse than I ever was just makes my heart break.
I wish I had some other way to help them in addition to our prayers, but this time all I have to offer is my own hope in God that one day he will he ok. Parker will be a new person and when he comes out of this darkness he lives under he will be able to look back and find the positive things that happened in his long journey.
I am personally praying he will never lose faith that he will be okay and all of this happens for a reason, it's not God trying to torture him in any way.

Here is a link to the most recent post.

Psalm 23:4
Even though I walk through the valley of the shadow of death, I fear no evil, for You are with me; Your rod and Your staff, they comfort me.