A couple of days ago I saw someone post something on an online Lyme site about how to ask for help when you have a debilitating tick borne illness like neurological Lyme disease. When I saw the words “Fear, Hopeless, Disease is not Real, No Support, Nobody Cares”, I was actually in tears. Asking for help seems like a simple thing and probably sounds silly to most people. Yet, this was one of the most horrible things for me when I became truly unable to function and care for myself, my kids or even my pets. It brings back feelings of fear, anxiety, loneliness and sadness. There was a point many years ago after I was misdiagnosed by over 25 physicians and came out of the fifth hospital for unknown neurological diseases that I truly needed help! I could not even put my kids on the school bus at one point, push myself out of bed, walk across the floor, or even say a sentence and I was in excruciating pain. After the seizures, encephalitis, and peripheral neuropathy I had to get help.
I normally worked two or even three jobs at a time and I cannot remember a time when I was not studying something somewhere. When I got sick with Lyme, I went from 100 miles an hour to a dead stop in a matter of months. I found many of my closest friends ran away and I was devastated, hurt, and confused. I heard things like “well it is not like you have cancer or anything.” My personal favorite to this day is someone smiling at me saying, “what does not kill you will make you stronger” like that was supposed to make me feel better. The reality is it just makes you sicker! Even my family could not handle seeing me sick and I was left alone in 5 different hospitals without anyone making sure I had proper medical care. I would not do that to a stranger and it destroyed many of my relationships.
My need for “help” alienated family and friends but in my mind they were the people that should have helped me. This makes people with a chronic illness feel even worse when they try to get the help they need. Who do they ask? Now many people are blessed with empathetic loving spouses or parents and trust me from what I have seen they are among the minority so you need to remember what a blessing these people really are. I do not think you can teach a person empathy, compassion, or kindness. I will always remember crying for my grandparents that died and could no longer help me, crying because I did not understand why my friends ran away, and crying because my family could not handle or understand my illness. I did not understand my illness either but it was obvious that I needed help.
I did have a couple of friends that never ran away and helped me. After I left the last hospital I found a Lyme literate physician and was properly diagnosed. After a ten year span of being soaked in antibiotics I finally said I had enough and I was going to treat myself the rest of the way in a holistic way. During my treatment I had to travel every single day for 40 minutes to the Lyme Doctor’s office to be placed on a IV and this lasted about 4 months until my gallbladder gave out. I could not drive, I could not walk well, I could not speak well, and I most definitely could not care for my family or pets. I asked my entire family to help me and most of my friends and found myself overwhelmed with fear and loneliness.
Things changed when my 80 year old Aunt and Uncle came to live with us and take care of me and my kids. One of my friends also reached out to his church and people I had never met volunteered to drive me 40 minutes and wait for my IV to finish and then drive me home. I started to see the world as a kind loving place again and realized that I was in a “New Sandbox with New Kids.” I also made friends with the people that were going to get the same IV and visiting that Doctor. When I was well enough I started looking for support online.
One of the funniest things I look back on during that horrible period of time is one day in the Doctors office while I was waiting to get hooked to the IV, I heard a voice that said “Are you Monica?” It was a woman that I met online and I have no idea how we both ended up at the same Doctor, in the same state, and at the same time….and she knew who I was! She is still my friend today!
You have to be careful online now more than years ago because I find many tick borne illness sites to be filled with negativity and fear. I try very hard to make sure the online FB site I manage called Dr. Monica Bruenn – Holistic Lyme Practitioner is all about Education, support and love to help you on your healing journey. You need authentic empathetic kind souls in your life during this time. Luckily, I found several and they are still my best friends 14 years later. I will be honest and tell you that I have also lost a few friends along this journey because they died and I miss them very much. I did not know then what I know now. Many people I met online when I initially started this healing journey are still my best friends.
What I am trying to say is that asking for help started more like a nightmare but ended up giving me lifelong friends that I consider more like family to me now. They are the people that listened to my deepest fears, that did not run away, and that started a “New Sandbox” to play in when I was at the scariest, loneliest time in my life. I am connected to those people by a bond that cannot be explained in words. I truly believe these people will be in my life forever. If you need help, please ask for it and trust that the Universe will somehow take care of you and lead you on your healing journey. It will lead you to a “New Sandbox” with a new set of loving wonderful supportive friends.
Check out my blog video on how to easily remove a tick from your pet.