Battling disease
This is probably one of the hardest things I’ve ever had to sit down and write. Being a naturally optimistic person, I don’t exactly like interacting with my demons or the pain that has plagued me in the past. In some aspects, I enjoy living in denial and ignoring what is bad. I try to cling to the fact that maybe if I’m blissfully unaware then the pain will just go away. It’s my coping mechanism and it doesn’t work. It’s like playing hide and seek with your shadow; it’s impossible because it doesn’t go away, it’s always with you. I can’t will the world to just be good to me. I have to be able to handle the harsh realities and chronic illness does just that. It forces you to feel it and not turn away from it. Lyme disease transformed my life; It completely rocked my body, my heart, my soul. And although there were many times I cursed my illness, I’ve landed in a place in my journey where I’m grateful for it. I don’t think anything else could have transformed my life the way my disease has.
Over the years people have asked me about sharing what I've learned about dealing with Chronic Lyme disease. What has helped me? What has hindered? How have I made progress? And I’ve always been terrified to open the floodgates of explaining and getting deep about Lyme. It was the monster in the dark that I couldn’t see but knew it was there. And I just couldn’t bring myself up to opening myself up and diving in to what really has happened to me. But it’s so healing and I need to talk about it.
Lyme disease is a tick borne disease that is very hard to diagnose and then treat. It can come in all different types of shapes and forms. Funny, when I was diagnosed with it, I was THRILLED because I had always had silly little sicknesses that were treated with antibiotics, and I would get better within days. I thought the same with Lyme disease. I wasn't quite aware that this disease would take years of my life and make me quite miserable. I was blissfully unaware and hopeful.
One thing that is most frustrating is the fact that Lyme is INVISIBLE. One minute I feel okay, then all of a sudden it seems like the floor has been ripped out from underneath me and I need to sit or lie down immediately or else I will collapse. This can be confusing to most people because we looked fine just a few minutes ago. Most of the time people think it’s all in my head but they don't understand the dynamic of being chronically sick! It's a huge balance of managing your emotions, your diet, your supplements, medicine and knowing what you can put your time into. Some days all I can do is just sit around, take care of my body, crochet, or do some minor activity. It's rather depressing, especially if you've planned out your day and had wanted to be productive, but no, you're sick and you'll only get worse if you keep pushing yourself too hard so you stay at home.
I’m hoping that this blog post will shed some light on this disease and help others who have it, or have a loved one that has it. Mind you, I’m not going into all the details about it but I wanted to open up about my frustrations with people (mainly loved ones) that didn’t understand and struggled to support me. In fact, most of the time I had to worry about not getting their feelings hurt amongst dealing with pain, anxiety and depression. It was a bit of a nightmare and I became more and more of a recluse because I hated seeing people disappointed. I wish I had a safe, easy way of expressing that pain so someone would understand and that’s what I’m hoping this will be. It’ll either help you, or someone you love.
Things that have helped me with Lyme:
1) Although it is often overlooked, emotional health is absolutely essential to your physical health and healing. After about two years of treatment, I had become quite depressed. I didn’t want to get out of bed, I didn’t want to see people that I loved, I would barely get anything done and honestly, some days I just wanted to fall asleep and never wake up again. That’s when I started to see a counselor and began the hard journey of working through emotional hold ups. I was amazed at the relief that I felt when I realized this. Our emotions toll our bodies so easily and they can also fester in certain places in our bodies and cause disease. When I had breakthroughs, I began healing and feeling better. I was amazed how much my emotions were hurting my body and not giving it the right energies to actually heal properly. You should definitely look up emotions and how they are linked with chronic disease.
2) Understanding your limits is vital! What you are capable of doing, emotionally, mentally and physically is something that anyone needs to be aware of! When I was really sick and I would have a random good day, I would fill it up with everything and anything I possibly could and then I would go down hill fast. If I was a better manager of that day then I would have another good day until I pushed myself too hard, depleted my body and boom, I wasn't doing well again. It’s hard to find what works but don’t stop trying. You have to try almost everything and anything in the book to figure out what works for you and what doesn’t.
3) Feed yourself with good food and surround yourself with good people. When I switched to a predominantly vegan, gluten free, sugar free diet and started eating more fruits and vegetables, along with a smoothie loaded with supplements every morning, I found myself getting better! My body wasn't weighed down by bad food that would frequently make me sicker. On top of that, I began weeding out the people I hung out with and set firm boundaries. If I felt someone was sucking out the limited energy that I had, I would take a step back and analyze the situation, trying to figure out if it was a situation that could be fixed or if it was someone that just needed to go from my life. It definitely helped.
4) Find something that uplifts you! During my illness, I always had to do SOMETHING so that I wouldn't go crazy. I had to lift my spirits. Before I got sick, I was a pretty active person, and I had always wanted to fill my days up with a lot of things, especially horses. But after I got sick, I couldn't go ride my horse, and if I could, it was only for a few minutes or else I would get very sick. It was depressing. I turned to being loved on by my dog and putting a lot of work into my art and talents that didn't require a lot of physical input from me and gave me immense joy. After awhile, I found that my depression was easier to manage because I could see how my dog would figure out I wasn't feeling well and would love on me and not let me leave his sight. On top of that, I could see what my hands were creating with art. I could write something down, a short story, or write a song and I could see that I created something through my hardship. Find what brings you joy, makes you laugh and don't let yourself get so focused on other things that you forget it.
5) Try anything and everything. It took my awhile to find something that worked for me. I tried all sorts of different treatments, antibiotics, IVs, Picc lines, oxygen therapy, etc and I didn’t really find that much helped me except for going to a kinesiologist weekly, taking a lot of supplements, diet and taking a homeopathic designated for Lyme disease. 6) Know how to detox. Make sure you drink plenty of water and have a bath with epsom salts at least once a day. It will help detox your body and you will feel better. In the early stages you will probably have a very overwhelmed body that when it detoxes just a little it will go into a full blown herxheimer reaction due to all the die off and the detoxing you’re experiencing. But it gets better.
7) Last but not least, you WILL GET BETTER. Say that with me again, YOU. WILL. GET. BETTER. Write it on your wall, have a reminder in your phone or somewhere obvious where you are reminded that your life is not over and you WILL get better. Positivity is the biggest factor.
Things to know if someone you love has Lyme:
1) When someone with Lyme is feeling absolutely horrible they are likely looking no different on the outside than they do on one of their “really good days”. This disease usually does not present itself with obvious visible symptoms, and if it does, we’re normally thrilled and want to show it off because battling a predominantly invisible disease is horrible -mainly because people just don’t understand. Be kind to us, don’t think we’re a bunch of hypochondriacs; that just makes us feel even worse.
2) People with Lyme disease quickly become amazing actors because otherwise no one would be our friend! Most people believe that a round of antibiotics will heal us and we will be normal again but they don’t realize how there is no “magic shot” or quick fix for chronic Lyme disease. What is most frustrating about this disease is that one treatment won’t fix all. Each Lyme case is unique and will respond differently to treatment. Often times we need months of treatment, an assortment of different doctors and health care practitioners before we find SOMETHING that works. It’s a frustrating journey, and no matter how upset you as a loved one may feel, know that the person you love feels it 100 times worse. We often feel disappointed and depressed that we aren’t better yet. We need your reassurance to stay hopeful so we can persevere through the hardships that are bound to happen with this awful disease.
3) Lyme treatment causes something known as a “herxheimer reaction”. Or a “herx” for short. Similar to how chemotherapy makes a cancer patient feel worse, when someone with Lyme disease takes antibiotics, it can cause a large amount of die off which releases a huge amount of toxins into the body. This basically results in all of our regular symptoms being amplified as it takes some work for our bodies to get rid of these newly circulating toxins. Often times our bodies are so overburdened that they are not efficient at detoxing these toxins well, so it’s a difficult process, and definitely not an easy one to endure at all. Unfortunately, it is often necessary to push through this in order to make improvements.
4) Lyme disease treatment is extremely expensive, and likely not covered by insurance. Most treatment that can be covered by insurance is the newly bitten person that has gotten a small amount of symptoms and begins taking a round of antibiotics. In most of these cases a few weeks or few months of antibiotics are all that is needed to regain health. But when you have late term chronic Lyme disease, you aren’t so lucky. We have to try almost everything to find something that works. Sometimes this means traveling to doctors on the other side of the continent, maybe even the world. Or trying new cutting edge treatment options that are pricey and paid for out of pocket. This is a bit of a nightmare for us, as we already have the huge burden of failing health to carry, and don’t need the added stress of coming up with enough money to get better.
5) If you want to help your friend, or loved one, offer to host a bake sale or fundraiser to help raise money for their treatments, or just be there to listen and love on them. It will probably mean more to them than you know. Company, even if it’s not much, is extremely appreciated with someone that is dealing with Lyme.
6) Be your friend or loved one’s cheerleader! Keep them persevering and don’t let them give up! We need all the support we can get!
