Trying to find joy when everything you worked so hard for crumbles right in front of your eyes is very hard.
That’s what happens when you have late stage Lyme Disease.
The job that took years to get to, gone. The education you worked so hard for, gone. The husband or wife you’ve been with for years, gone. The goals you had, gone. Friends you’ve had for years, gone. Family you thought were family, gone. The independence you once had, gone. Social life, gone. Your health, gone.
I mean, it shatters your life into itty-bitty-annoying-frustrating-heartbreaking pieces and you can’t help but feel helpless, hopeless and very lonely.
You lose a sense of who you are because you are so isolated from everyone else and life seems nothing but bleak and barren.
It’s a very scary place to be in.
I went through some really dark and scary times when I was very ill, it’s inevitable with this illness, and I really wanted to share some things that have helped me get through those dark days. Everyone’s illness is different and everyone deals with their illness differently, some of these may work for you and others won’t, but this is what has worked for me so far.
Here’s a list of few things on how to find joy when you have Lyme Disease.
1- Pray, pray and pray!
When I noticed my neurological symptoms worsening, such as my body becoming weaker, losing my balance and having a hard time swallowing, I was beyond frightened. I cried myself to sleep many nights and hoped I wouldn’t wake up the next morning, but then something came upon me one night and I can’t explain to you what it felt like but it was a strong urge to pray. And that’s exactly what I did. I prayed fervently for my health, my mind and my soul. I didn’t know what else to do but pray, and that’s when I realized I needed to rely on God and seek His strength continually from that point on (Psalm 105:4).
When I cried, I sought Him out in prayer and He was right there to wipe those tears away. When I was lonely, I sought Him out in prayer and He was right there beside me. When I was weak, I sought Him out in prayer and He gave me strength. When I was fearful, I sought Him out in prayer and He comforted me.
There’s a supernatural peace and strength that comes from the Lord when we seek Him wholeheartedly.
Give it a shot … I know you will not be disappointed! 😉
2- Spend some time in God’s Word
The Bible is more than just a book. God literally breathed into those pages (2 Timothy 3:16) to communicate with us … with US! That just boggles my mind! When I would lie in bed sick and not sure how I was going to get through the day, I would find strength to open up God’s word and I would get so lost in it, you guys. “The Lord helped me get through this day, and He will help me again tomorrow” I would say this to myself day after day. There is power in His words.
When our Father says “Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.” (Matthew 11:28-30) He means it. God never changes, therefore His word is permanent. God is the Truth, therefore His word is the truth. God is reliable, therefore His word is reliable. God is powerful, therefore His word is powerful. God is authoritative, therefore His word is.
Open up the book He breathed for you, sweet one, and read the love letters He wrote for you. I know His words will never let you down!
3- Fellowship with others
I never knew what fellowship with other believers really meant until I met a group of women that love the Lord in my development a few years ago. They will forever have a special spot in my heart. There were days where I couldn’t attend Bible study in our development because I was too sick to leave the house, and these women would drop what they were doing and march over to my house like an army, lay hands on me and pray over me. If I cry they cry, if I laugh they laugh. Their presence, their encouragement, their prayers and their love has helped me sooo much on days where I felt like I couldn’t go on. You guys, I know for a fact their prayers had a lot to do with my healing today.
It’s hard for most Lyme patients to leave their house because they are so sick. Fellowship doesn’t only have to be with other women or men out of your home, fellowship can also be with your husband, wife, children or whoever is in your home. Have them read scripture to you if you aren’t able to read it, pray for one another, start a Bible study with your family .. it doesn’t have to be big or elaborate, anything that will bring you all together and talk about the Lord will be a blessed time. Fellowship can most definitely be in your home!
4- Do something you enjoy doing even if you have to pay for it the next day
Lyme patients know what the real meaning of being cooped up in the house is. The couch, pj’s and a blanket sound a lot better than doing anything else. Showering, getting dressed up and even conversing with others can be sooo exhausting at times. When I was very ill it was soo hard for me to find the energy and strength to make myself look decent and get out of the house and be around people, and sometimes being around people made it worse for me because I would compare my life to theirs (I will talk more about this in a bit here) and I would go back home more exhausted and more depressed than I was before I left.
My husband realized being around others really affected me at times, so he made the effort to get me out of the house .. just me and him. We drove around a lot because I had a hard time walking back then, we went to parks and he would hold my hand and help me walk to the bench … we would just sit there, people watch and giggle. It was so simple, yet fun. It got me out the house even though some days I would pay for it with my health the next day, it was definitely worth it because almost every time he took me out my mood was so much better when we got back and I would look forward to the next time he took me out!
Find someone whom you are comfortable with where it doesn’t require you to dress up to be around them and where you don’t have to try really hard to converse with them. Have them go over to your place, watch a movie, snack on some yummy food together, play a board game with one another, go sit outside (when it’s nice out, of course) and enjoy the fresh air with one another … this will help you get your mind off the illness for a short while!
I do want to encourage you, this does get better. I am so much healthier than I was back then and now I look forward to being around people! They bring me so much joy!
5- Surround yourself around positive people
You guys, there are a lot of negative people out there!! And us Lyme patients just DO NOT have the energy or time for that. There were a few people in my life when I was really ill that were causing me a lot of stress because they were sooo negative. Nothing but negative things came out of their mouths, it was so frustrating and it was affecting my health and my mind tremendously. It came to a point where I had to tell them that either they had to change or we could no longer speak because it was affecting me that much.
If you have negative people in your life, I encourage you to stand up and tell them how you feel because their negativity will bring you down and that is the last thing you need when you have Lyme Disease. You need people around you that are positive, joyful and ones that will encourage you to keep going when you are having a hard day!
Positive people + positive thoughts = happy Lymie! 🙂
6- Ice cream? sure why not!
Some may be completely against this, but once in a blue moon I would splurge and have some ice cream, or a piece of gluten free cake, or something sugary and tasty. It made me feel semi-normal and happy haha! How can you not feel happy after eating a founder’s favorite from Coldstone?! or guilty actually because you just consumed a 1000 calories .. ah who cares, yolo, right? haha!
So, maybe once in a blue moon go out and have a yummy ice cream cone or something tasty. Eating chicken and veggies every day can get a little boring, right?! 😉
7- Educate your family and friends about Lyme Disease
We all know Lyme Disease is very very controversial, and I wanted everyone I loved to know what Lyme Disease was really about because bickering with someone I love about Lyme Disease would bring me down. I sent my family videos, articles and documentaries and had them read and watch everything so they knew more about it. Unless you have Lyme Disease, a person will never know what Lyme Disease really is and what it can do, but the best I could do was find accurate information and send it to them. It always made me so happy when a family member would ask me a question about Lyme Disease, it made me feel like they really cared.
I would highly recommend doing the same. Research first and find accurate articles, videos and documentaries and send it to your family members and friends. Ask them if they would be willing to go to a support group with you so they can learn more. It makes your life and theirs so much easier!
Unfortunately, there are some who are set in their ways and will not read any of the stuff you send them or go to any of the support groups you go to. My advice would be is to pray for them .. I’ve seen the hardest hearts change because of prayer. It can happen!
8- Find a Lyme Community
When you are ill with this horrendous illness you feel alone, not matter how supportive others around you are, you feel alone because no one can relate to what you are going through. Most of the time you can’t even describe a symptom of Lyme and co-infections without sounding absolutely crazy, “oh I feel this crawly prickly thing inside my head, I promise it is not lice, and then I get an electric shock feeling” .. where’s the looney bin, y’all?! that’s how I would describe one of my symptoms I struggled a lot with back then! How can we share some of our crazy symptoms with others who know nothing about this illness? I found that joining a Lyme community online was one of the best things I could have done for myself when I was very ill.
I had sooo many questions, so many fears & concerns and they all answered me promptly, they would comfort me and make me laugh. They were/are my saving grace when I was struggling with this illness. They brought me so much joy when I didn’t think joy could existed any longer. What I love about the Lyme community is that we are there for one another, always, everyday, no matter what. We are like a big family than can never be torn apart.
I follow the blog What is Lyme Disease regularly. Lisa has a TON of information on there for anyone that is looking for support groups or any kind of information about Lyme Disease. Lisa has been ill for years and she dedicates her life to other Lyme patients, she is remarkable! I would encourage you to go on there and look for a support group in your area, I know it would be very very beneficial for you!
9- Do not compare yourself to others
I struggled with this one A LOT. I couldn’t go anywhere without wanting to cry because everyone looked healthy, their lives looked perfect, they were laughing, running around and just having a glorious time while I was suffering. Comparing myself to others like that did absolutely nothing but bring discontentment to my life. It made me absolutely miserable. It wasn’t until I started really reading God’s word is when realized I had to change my perspective.
Galatians 6:4 says “Let everyone be sure to do his very best, for then he will have the personal satisfaction of work done well and won’t need to compare himself with someone else” satisfaction comes from doing your best, it doesn’t come from comparing yourself to others!
God made each one of us so unique and special from one another. He had a plan for both you and I long before we ever took our first breath … take great delight in that, dear one! What the Lord has in mind for you isn’t the same as for someone else. So don’t feel bad if you don’t have some of the things others have. This is your journey, embrace it, and trust that God has a great plan for you and your life!
Paul shared from a jail cell (Philippians 4:12-13) that contentment doesn’t come from what we have or don’t have, it comes from our relationship with Christ. Applying this to my life has brought a sense of joy and contentment I never really felt before!
10- Always have faith!
It’s so easy to lose faith when you are sick and your life feels like it is crumbling right in front of your eyes. I always try to remember the promise the Lord gives us when I feel overwhelmed or discouraged “And we know that in all things God works for the good of those who love him” Romans 8:28. It’s hard to know what good can come out of any bad situation, and sometimes we will never ever know what it was that God was doing, but we need to trust that he is doing us good whatever the situation may be. This, my friend, is what it means to put your faith in God.
Trust Him and put your faith in Him, He will never ever let you down!