10 Things I Wish People Would Remember About Their Loved One With Chronic Illness
One day I was extremely frustrated with everything going on inside of me and my inability to explain it to those I love. I had the idea that if I was able to create an easily understandable list, maybe then we would both be able to reach each other when needed. It has helped my family and friends understand how chronic illness and chronic Lyme disease affect every aspect of my life. I hope this will also help someone else like myself – that they may use it as a tool to help those around them understand what is happening in their bodies and minds.
1. It doesn’t matter how often I tell myself, or my family and friends tell and show me that this is not true, but there is always a part of me that feels like a burden.
2. That’s why it’s actually a lot harder than you realize for me to ask for help or even comfort. So offering to do something specific or even just performing a small act of kindness really goes a long way.
3. If I’m distant or disconnected please know it’s not you and it’s really not me. It’s the disease. I’m still here and I still love and care for you just as much.
4. I get overwhelmed with everything going on inside my body and sometimes have to unplug. Other days I may just not feel up to talking. Please don’t take this personally; again, this is the disease and not me.
5. If I’m short-tempered, anxious or even rude at times please just remember I’m constantly under attack from every direction. This can cause my emotions to run rampant. And most of the treatments I go through will only exacerbate my symptoms before I ever seen any improvement. That usually means every symptom physically, mentally and emotionally goes into hyperdrive. Trust me, I know it’s hard on those around me… it’s equally hard on me. I often feel like I am losing my mind completely.
6. Don’t forget about me. When you go through life with chronic disease and have the blessing like I did of some time in remission, those connections mean a lot. Even if it is a Snap or a text, just a simple gesture of love can help a lot, when you feel like you’ve been forgotten.
7. Educate yourself on what it’s like to live with chronic Lyme so you can better understand what someone you love is going through and can even help raise awareness.
8. Saying things like “You don’t look sick” may sound like a compliment to you, but to someone like me it feels like you are questioning my illness and I feel the need to defend myself.
9. If you say you’re going to do something for or with someone who is sick like me… then do it! There isn’t a lot that I can look forward to right now – no dating, going out or much of anything really outside of doctor appointments. So when a promise or plan is made to brighten up the day of someone who is sick… stick to it. It’s often the ray of hope we have been clinging to for days or weeks.
10. Lastly, but really the most important part too. Please keep sharing, commenting, praying and giving as you can. This is neither an easy nor cheap journey. And I need all the support I can get.
Getty Image by EvgeniiAnd
I'm searching for the words to try to explain my journey fighting Lyme Disease and all that go along with this life-altering diagnosis. In 2010 my world came crashing down when I was told those earth shattering words that many of us live to fear, “You have cancer.” I was in Washington state at the time and thankfully my mom was able to fly in and join the support system I had there. From there we came back to Mississippi and was seen at West Clinic and after two biopsies determining that they believed I had Non-Hodgkins Lymphoma. By the grace of God my tumors disappeared. I can remember being in the hospital and asking about Lyme disease. It was brushed off and treatment for histoplasmosis began. Several PICC lines and countless vials of IV medicine over an almost year and half process that round of treatment was ended. The next few years were spent in and out of the hospital and emergency rooms. A list of specialists a mile long diagnosed me with a list of diseases and disorders equally as long. With each new diagnosis or symptom, a new medication was added. It was only a matter of time before my body crashed under the weight of all the medications. In 2013 I was diagnosed with late stage neurological Lyme disease. The tests showed that I was undiagnosed for over 7 years. The crazy thing is that Lyme can mimic or cause Lymphoma so all those years I spent treating something that was caused by my Lyme disease. I started the first round of antibiotics via a PICC line in late 2013. By March of 2014 I had endured six PICC line infections, removals and replacements when the doctor's decided to put in a portacath. After nine months of IV antibiotics treatment twice a day of 3 different medications my body was falling apart. In the process of trying to kill my Lyme and coinfections the treatment was unfortunately killing me. I was bedridden most of the time and unable to enjoy life or even participate. It was after a very honest talk with my doctors that we realized this was not the path for healing. I worked hard over the next year and a half to try to rebuild my body after the havoc of Lyme and treatment. I lost 120 pounds, started eating healthy and exercising and took myself off every pain medication/ pharmaceutical that were flooding my body. It was during this time of sickness and hope for recovery that I found my true passion in life and enrolled in college to one day become a pediatric oncology nurse. Sadly, this window of health was short lived and by the end of 2017 I was beginning to show symptoms of my disease no longer being in remission. In early April of 2018 I was forced to face the truth and resigned from my job and started the process again of IV antibiotics treatment. Within the first dose of treatment the side effects began, chronic nausea and vomiting for hours on end. Excruciating pain and migraines coupled with severe muscle spasms and the loss of any muscle control at times. I don't know how to explain to someone that hasn't been through a life changing chronic illness what it is like to feel yourself slipping away. Or the overwhelming fear when you stare down at your own legs and your unable to stop the violent convulsions. Or the heartbreak that comes with discovering your teeth are breaking off because of the acids from throwing up so much and so often. And in the midst of all of this turmoil, knowing if you could only have access to higher qualified doctors and healers that you could return to a better quality of life; not confined to the four walls of your bedroom which has now transformed into a mini hospital unit. As it stands now, my doctor has informed me that I am out of options for beating this disease. The ONLY next available step is to check into a treatment facility that is designed to treat the disease and heal my body. I've been blessed in my life to have experienced some amazing and miraculous events. I'm truly grateful for having some of the kindest and most compassionate people sprinkled in throughout my life and over the years with this gruesome journey of living with a life-threatening disease. My fear is that at only 33 years old, after overcoming every struggle so far that this disease will rob me of so many more life experiences that were once in store for me. Or that even worse, I will continue to slowly deteriorate until I'm no longer myself or unable to recognize those I love or them me. In the meantime, I want to raise awareness about this disease and what it truly does to someone.
lymesouthernbelle