As I have progressed through treatment and have started to slowly get better, my symptoms have changed drastically. Previously my worst symptoms were intense, borderline unbearable pain: extreme nerve pain, kidney stones, ruptured ovarian cysts, blinding migraines, etc. Pain so terrible that there are no words to describe it--it would cause my body to involuntarily flail around and convulse. At times it would cause me to scream so loudly I had neighbors knocking on my door--others I ended up curled into a ball on the bathroom unable to speak for hours. As terrible as the pain was, I was able to utilize techniques learned at pain management classes to deal with it and I became pretty good at handling this mind-numbing pain I experienced for the past year.
Recently, however, my neuroborreliosis has kicked in and my symptoms have changed completely. I have seizures, partial paralysis, and even temporary paralysis fairly often. My brain fog is so extreme that I will spend hours searching for something that ends up being in my hand...or spend hours searching for something and end up forgetting what I was looking for in the first place. It takes me about two hours to do what use to take me 10 minutes. My brain is literally not working most of the time. It is difficult to carry on a conversation because I go on long tangents, forget what we were talking about, or get so confused I just have to stop talking. If you do not stop me, I will tell you the exact same story three times in fifteen minutes--not realizing I had told the story seconds earlier. I also have pretty severe dementia, and these symptoms are exacerbated with fatigue.
So, prior to this weekend, I had spent two weeks in bed in a comatose-like state. It is embarrassing for me to admit (but I want other Lymies to know they are not alone in this), but I spent the entire two weeks staring blankly at the ceiling and drooling on myself with no contact with the outside world. I could not get up to go to the bathroom because the room was moving around so violently. Nothing made sense and I was hallucinating pretty severely. The only way I know how to describe it was that I felt like I was on a two week long bad trip from some terrible, evil drug. I even had constant loud noises that I would hear (hallucinations) that haunted me every second and left me even more confused. I felt completely disconnected from my body--like I was watching this horrible process happen to someone else.
Five days would pass in what seemed like a few hours, and then one day would feel like a month. Time made no sense to me and I could not remember what I had done five minutes ago. It was more terrifying than any type of pain I have ever been through. I had temporarily completely lost my mental faculties. Feeling myself literally going crazy is one of the scariest things I have ever endured. It seemed as if I was spiraling out of control faster and faster each day. I could not walk, so I would crawl if I had to get out of bed. Several times I got lost in my small two bedroom condo and did not know where I was. I would just curl up on the floor, crying, until I could remember how to get back to my room.
To put what Chronic Lyme treatment does to your body in perspective, I have a friend who had breast cancer and conquered it after a few years. She then got Lyme but luckily caught it very early. She only had to be on the treatment protocol for six months, yet she told me that her Lyme journey was significantly more difficult than going through chemotherapy. I am sure that this is not always the case for people who have battled both, but society for the most part has no clue how hellish going through treatment for this potentially fatal disease is.
Even my close friends do not know how bad it is--I put a lot of energy into not letting it show when I am well enough to be around people. It is too jarring of an image to see a friend convulsing uncontrollably, screaming at the top of their lungs, then transitioning into a state being unable to speak, and then fall into paralysis that can last from a few minutes to several hours. During these episodes, my boyfriend takes amazing care of me, but when I open my eyes I have no idea who the stranger standing over me is and it absolutely breaks my heart to not recognize the man that I love with my entire being who has been so incredibly supportive, patient, and nurturing during this entire process.
Finally, after two full weeks of living Hell, I was able to begin to carry on a decent conversation again. I was able to get out of bed and actually walk. Within two days I was able to function with a sense of something closer to normalcy. After having no human interaction for so long, I was craving being around people that understood I was sick and would not judge me or act differently around me for it.
Luckily, it was one of my good friend's birthdays and we celebrated with a small group at my lake house. I put a lot of energy and concentration into trying to act as "normal" as possible. I so badly needed to feel like a normal person, just for a few days, and forget about this battle I have been fighting for so long.
When Lyme is in your brain, it can cause severe changes in your personality. I have retrained the way I think and have been able to maintain a very positive attitude for the most part of my journey. But now that the Lyme in my brain is flared up, I have caught my personality changing for the worse. I could not help but feel jealous seeing my married friends interact with each other--playing around, having fun, and so obviously blissfully in love. I felt so guilty that my boyfriend has been deprived of that for so long. I felt so much anger watching everyone having so much fun, being carefree, and enjoying life. I was not angry at them, but at myself and my disease. These feelings were so intense that it scared me--I have never been the person to feel this way, and I felt so ashamed that these horrible thoughts had even crossed my mind. I have been determined that I will not let my Lyme change my personality but no matter how hard I fight it these feelings get through the walls I created to stop them. This drastic change in personality for the worse, unfortunately, is all a very normal part of what everyone goes through while undergoing treatment for chronic Lyme. It does not happen because you are depressed about being sick or because you have a bad attitude...the Lyme spirochetes are literally attacking the part of your brain that affects your personality and the way you think. However, knowing that this newfound negativity has a medical impetus does not make it any easier to deal with.
Now that I have explained my state of mind going into this weekend, I will let you know the beauty that came from being around supportive friends that I trust enough to let some of my walls down. I still cannot help but put a smile on my face and try to act happy...that is just innately a part of me that wants to please others and not burden them with my illness.
Although I was mentally foggy and had a few episodes, I was able to truly enjoy myself. I pushed myself too hard, knowing the painful repercussions I would later face, but I felt that mentally I needed it so badly and it was worth it. I was able to have so much fun and come out of isolation--it was pure bliss.
When everyone left, two of our friends gave me a gift. These two people are some of the most kind, supportive, and beautiful souls I have ever met. Instead of backing away from me once I became very ill (which is a natural reaction for most people), this couple became more involved in my life and have been an integral part of my healing process emotionally. To know I have others who care about me so deeply gives me the strength to keep fighting. Isolation is one of the worst parts of this disease..many people do not understand it so most friends back away and out of the picture completely. The phrase "you find out who your friends are" rings true...but sadly in most cases the lesson is that you find out who your friends are not. Unfortunately, due to this and many other reasons, the suicide rate in lyme patients is shockingly high. That is something I would NEVER resort to or even consider, but the isolation I face is very common in the Lyme world. So having friends like this couple is one of the greatest blessings that God has bestowed upon me and I am so fortunate to have them in my life.
So, back to the purpose of this post: the Key. When I opened my gift on Sunday, my neuro symptoms were starting to act up again--I was having difficulty speaking, I was stuttering or using incorrect words, and I started having the symptoms that generally lead up to an episode of seizures followed by paralysis. When I read the card and opened the jewelry box, I started crying uncontrollably with tears of joy and appreciation.
This couple with such warm and loving hearts had given me a necklace with a key on it. The key was stamped with the word "Inspire." It was one of the Giving Keys, which you can read more about by clicking the link.
From their website: "The Giving Keys exists to employ those transitioning out of homelessness to make jewelry out of repurposed keys that get sold and shared around the world. Each key is unique and carries a message like HOPE, STRENGTH, DREAM or COURAGE. When the wearer of the key encounters someone else who needs the message on the key, they give it away and then send us the story of their key being paid forward."
This was one of the most beautiful gifts I have ever received. I immediately put it around my neck and have only taken it off to take pictures to post on here. The length of the chain is long enough so that the key falls close to my heart. It reminds me that I have incredible people in my life who love and support me no matter what--even when I am sick and not fun to be around. They accept me exactly the way I am right now, and that means more to me than those two incredible beings will ever know.
The inscription, "Inspire," also has reminded me to stop feeling sorry for myself like I had been doing during those two weeks. Every person that has Chronic Late Stage Lyme Disease goes through what I am going through. The key is a constant reminder of a promise I made to myself many months ago: To seek out the good that has and will come from the bad. I have no choice but to fight this battle, but since I am forced to go through this, I am going to find the silver lining and use it to help others who are suffering as I am.
God has helped me to see all of the good that has come from me being sick and has used me as an instrument to help others who are sick and to help me grow and mature as a more peaceful and grounded child of God.
All of the positive memories of things I have been able to accomplish because of my illness came flooding back to me as I put the chain around my neck. It was the perfect present given to me at the exact moment I needed it the most.
This beautiful gesture of support enabled me to snap out of my negativity and I found that divine power deep in my heart that gives me the strength and courage to fight this battle with a peaceful and positive mindset; something that the past two weeks had taken from me.
I truly believe God places angels on the Earth and works through them to accomplish amazing things. I believe this couple epitomizes that. They have been best friends with my boyfriend for well over a decade, but had no history with me until they met me through my boyfriend--therefore having no obligation to go out of their way on so many occasions to help me and be there for me.
This beautiful gift has inspired me to continue fighting this battle--and once I conquer it, I will be able to pay it forward and pass this key along to someone else who is in need. By giving me this gift, they started a cycle that will continue to perpetuate and help countless people in the years ahead as it is passed on from one person to another. To me, this key symbolizes hope of remission and supportive life-long friendship. God has truly put some amazing people in my path and for that I will be eternally grateful.
To the two that gave me this beautiful gift: I am eternally grateful. I so appreciate you reminding me of my mission to inspire other Lymies and those suffering from other chronic conditions or invisible illnesses. Thank you so much for everything you have done for me...I will never find the words to adequately express what a meaningful impact you have made on my life. God bless you both and I love you. -Sarah
This is what I received from the couple in response to my blog: "We chose the 'Inspire' key because you have inspired us to be better, more caring people..and to be stronger, happier people who know that anything is possible. Also because you have been such an inspiration to others by educating, battling and overcoming on a daily basis!"
The people that love and care about you when times are the toughest are the mark of great individuals and incredible friends. I am blessed.
**Update**: Minutes after posting this I learned of yet another loss of life of a Lyme patient to suicide that occurred a few hours ago. For those who read my blog because you have friends or family that are afflicted by this terrible disease and you want to learn more about it to adequately help them, please ensure that they have a proper support system. It is not fail-proof, but by doing so you could save a person's life. I try to remain as positive as possible in nature in my posts, but we have lost so many Lymies over the past few months and it needs to be addressed. Please feel free to message me on here or on our facebook page if you need advice on supporting a loved one with Lyme.