This week I am going to (sorta) lean away from the lyme aspect of my life. I mean this loosely because lyme ties into this, but maybe in a more positive than typical way.
My best friend introduced me to a hall mate from his school, who also has lyme. This guy is only a little bit younger than I am, he's been sick for 2-3 years. Only recently diagnosed though, just found out in August. He's found an LLMD within a few hours from him (thankfully!) who is now treating him with antibiotics.
This guy though, he's still new to the lyme front. He's done some research and he's learned a lot about the trickiness of the whole disease, that it may not be as simple as a few months of meds. Plus he's learned about the whole controversy behind it, so he's done a great job educating himself on the Ins and Outs of lyme disease. Which is great considering his brain fog and except for his doctor, he's flying solo here. He doesn't have much of a support system.
Well, My friend gave me the guys number and we ended up talking on the phone for..oh..about 3 hours and 45 minutes give or take. Which for me is a LONG time to talk on the phone. A long time. Im usually a 30 seconds or less type of person when it comes to talking on the phone. But we had a whole lot to talk about! It turns out me and him have very similar lyme symptoms and very similar upbringing, we also think very similar and have a similar outlook on the whole disease fighting deal.
I feel special for being one of this guys (lets call him E for now) first people to talk to about lyme. Its been fantastic for me also, ive met a ton of people with lyme over the years between my own work and going to the clinic, but this is the first person whose around my age. He's also the first GUY, usually I meet girls who are sick. Usually guys bottle everything up and aren't much for being friendly with other people, just from what ive noticed.
Me and E have really hit it off. Him and I have yet to stop texting for more than a few hours at a time, we have FaceTimed for hours on several occasions.
We go back and forth talking about some fun stuff, like work, cars, school(well almost fun lol) or talking about lyme things. We will text each other and ask a question like-hey do you ever get depressed out of nowhere? or-Do you ever go from having plenty of physical strength for work then all of the sudden have none to work with?
Its been nice to see a little more into how lyme has affected us and what isn't normal. January 26 next month is my 8 year anniversary of being sick, at this point I remember very very little of what normal feels like. Its been nice to have someone to compare to who has been sick for a shorter amount of time.
E went from having plenty of energy and being a full work horse, started working at 14 years old, long hours outside! To being able to do a small tiny fraction of what he used to be able to do, at a much much less intense level. He has even fallen asleep at the steering wheel and has had all sorts of scary things happen to him that were not at all his normal pre-lyme.
I had him write a post for me to post on this blog, which he has done and it will be my next post after this one. I really wanted him to share his story and begin finding his voice. I know it took me a long time to be able to find my voice for what I was going through, I knew I was tired but it wasn't so easy to explain or understand. Now I can.
On our first phone call, one of the things we talked about was the fatigue. It was nice to talk to someone who knew what bone crushing fatigue meant, fatigue that starts at the skin and permeates through the muscle and bone all the way through. We joke about all of the other people who whine about "being tired" that we hear at school, and we both laugh about. They just think they are tired, or they should try a little more sleep and a little less alcohol (more so the case at my school than his). I know I feel less alone now when I feel like the fatigue and other symptoms set in now that I have a friend my age who gets it.
We both talk about how we hate that the other is sick and that we both have this journey to battle through, but that its so nice to have the other now.
I shared more about myself and my illness with him on our first phone call than I have with anyone else right off the bat. Usually I only share little bits of personal information and I focus more on the other person, but we both just right off were fairly comfortable with the other. I even shared this blog with him, I have NEVER shared this blog with anyone so fast. To date, counting E, I have shared my blog with three people in total. This is one of my safe places, to keep it safe for me to share and reach out to other people with lyme (looking at you Rebecca :), I have to filter who I share this with in my life. I dont want to be judged for what I write, I dont want to be critiqued by my 3rd grade writing level, and I dont want to be gossiped about behind my back. I write a lot of RAW material about myself on this blog, which is beneficial for others going through a similar battle. I know I have an astounding appreciation for people like Yolanda Hadid who put her entire life in a book about her lyme battle, to which she faced a lot of judgment and ridicule, but in turn lifted people like me up in encouragement.
I was put on this earth for a reason and it has been made clear to me that at this moment Lyme is part of my life, lyme itself isn't so big anymore so much as reversing the damage left by the little bugs. But I have accrued an amazing amount of research and knowledge over the years from all of the books ive read and people ive spoken to, I feel wrong for not at least giving a shot to helping someone else out.
My best friend has never even seen my blog, and its probably the only secret he doesn't know about me. I did share to him its existence a while back but I didnt give him a link or the name, he just knows I write one somewhere on the internet. I share a lot online to the people in the lyme community who care to read, but in person I am actually very private except for a very very small select few people who I feel safe sharing with.
So meeting a nice fella like E who is fighting the fight like I am and holding his self together with prayers and pill bottles, I can only thank God for placing this person in my life.
We have yet to meet in person but its going to happen in the next few months one way or another, since he goes to the same school as my best friend I will now have two amazing people to visit every few months over in Missouri. We *almost* managed to pull off a visit at this end of this month, a very short one, but it didnt work out. Its gonna happen though.
Him and I have spent a lot of time relating over the rather messy aspects of being chronically sick, such as how friends disappear and family doesn't appear to care, or the emotions we dont share with just anyone, or some of the other darker scarrier parts of the whole deal, but we also encourage each other. Its easier to encourage someone when you deeply to the core understand the rough waves they are going through, I know for me its encouraging just to share the frustrating parts of being sick and having someone else get it or tell me they understand because they have gone through the exact same thing. Lyme isn't a disease that comes with much encouragement, its not as simple as going on the internet and finding all sorts of positivity as it is with some diseases such as cancer ( not bashing cancer patients at all, but there are many more cancer foundations etc. to help out and encourage them). So him and I both have an appreciation for the other for what we go through.
Our lyme symptoms are fairly similar, which is not necessarily super common with lyme because it can cause SO MANY different symptoms. The only major differences for us are-he can sleep at night and take naps during the day and he doesn't get panic or anxiety attacks, he has to take naps some days (especially work days) because he gets flat out worn out. Whereas its rare that I actually take a nap, when I get up for the day I typically keep going (I may have 0% productivity and accomplish nothing besides breathing oxygen, but I can stay upright longer than he can). I think he has more pain than I do, I still have pain and aches but its improved a lot. He has yet to gain any actual noticeable improvement with his medical protocol, I was the same with antibiotics, but he is on a very strong protocol ( I was never on a super strong ABX regime). A lot of our emotional aspects are very very similar, which is like a breathe of fresh air for me to have someone to talk to about all of this. Especially with it being a guy, usually its a girl that I end up talking to about emotional things and as bad as this is going to sound, talking to a girl-friend my age about emotional issues usually comes with strings attached in some way or another. With a guy, not so much, we are both fairly easy going people and we just talk about whatever we need to. We may be talking about something serious and something fun in the same conversation, just because we can.
Okay okay, Im rambling again which is one thing I can usually do all too well. I just dont like sharing only sad or depressing things all the time, its needed for me to share uplifting and positive things such as this every so often.
I have been praying for another guy friend who gets it for a long time, especially since my best friend moved away. Meeting E has been an answer to my prayers. I had this post practically written a few days after I met him a month ago, but do to busy christmas schedule and brain fog I couldn't get it all out onto paper like this.
I hope you all enjoy reading his post about his story :)
