One of the worst things about having Lyme is that it is an invisible illness. I never look sick, so its hard to comprehend how I can be “so sick”. I am hoping that by sharing my story I can start to spread awareness of what its like to be sick with an incredibly difficult, painful and isolating invisible illness. I am hoping I can help guide others on this isolating and scary path of illness and how to stick with it to heal yourself. I am not fully healed yet, but I am way better then I was 8 months ago. I still have a long way to go, but I am starting to see the faint light at the end of the long and dark tunnel.
I have so many feelings stirring inside of me that make me feel like I have to prove to people that I am really sick. No one believes you are really sick when you look normal on the outside. Its extremely hurtful and isolating to have people not believe you are really sick, or that you can’t go out or that you can’t work on their project. Lyme can be more painful and as difficult or more difficult to treat and heal from then Cancer. With Cancer is obvious you are sick and it makes people more compassionate towards you. With Lyme, you look fine and people just don’t believe you are really that sick.
What is even more frustrating about Lyme is that I do have some good days when I feel good and can go out and do things. These days are few and far between so I tend to overdo it on these days and try to play catch up on all the other days I was too sick to do anything on. Then there are the days when you feel like you are dying and you don’t know how long its going to last. Sometimes it changes in a matter of seconds. I can be out feeling good and then all of the sudden I get a wave of feeling super sick, like I am going to pass out and need to lay down as soon as possible.
I have gotten really good at being able to keep my sh*t together when this happens for about 5-10 min to be able to say goodbye to everyone and then go home asap before the feeling of sickness really sets in. So if you have been out with me and I abruptly say goodbye and have to leave, this is why. This usually starts with a flare in neurological symptoms, for example lights and sounds get really intense and my brain is not able to process it all and it makes me feel dizzy and light headed and really overwhelmed. Sometimes I get really, really fatigued that if I don’t start making my way home, I don’t know how I will have the energy to get home. It feels like I go into a primitive survival mode and have to get to my bed ASAP. Usually when this happens my short term memory is totally gone and I can’t remember if I even said goodbye to people or if I just left as soon as I could. Sometimes I don’t even remember how I got home. I just remember that I felt super sick and had to get to bed asap. Its like you enter a weird dream state that seems more like a nightmare then a dream.
Sometimes it passes in a few hours, sometimes this feeling lingers for days and I have to ramp up my detox to feel better, which takes a lot of work to do when you already feel exhausted and like you are going to pass out. Its hard to have the energy to sit in the sauna for 45min and then take a shower and wash your hair when all I have the energy for is laying in bed and not moving.
There have been times in the past that I have not been able to get out of bed for weeks because I am so weak or in so much pain. Taking a shower used to take all my energy for the day. There have been times when even laying in bed is excruciatingly painful and there is nothing that eases the pain or makes you more comfortable. Cannabis has been the only thing that helps relieve symptoms, but sometimes even that is not enough. There have been days when I could not walk or go up my stairs to my bed. Days when I had to walk up my stairs slowly on all fours because the pain in my knees was so bad. Days when I could not stand up straight or even walk because the pain in my hips was so bad and I could not straighten my legs. Those are just the physical symptoms.
On top of the physical symptoms I have experienced severe neurological and cognitive symptoms that have caused intense brain fog where I can’t think or process information. I have no short term memory and I have issues recalling words when I am mid sentence. I used to listen to music all the time, now I can barely listen to music because my brain can’t process all the sounds at once and it overwhelms me. Same with lights. Some days I could not even watch Netflix because it was sensory overload. I could just lay in bed and be and hope for a better day tomorrow.
And if that is not enough there are all the emotional and psychological symptoms that come with the disease. The bugs themselves cause major depression and anxiety and then of course being sick and missing out on life causes a lot of emotional pain and suffering as well. I used to be such a social and extroverted, hard working person. I used to do yoga 5-6x a week and own my own design agency. Now somedays I feel like a vegetable that can just try and be present and wait for my treatment to work or the days to go by and hope that I feel a bit better the next day.
Christine Miserandino at the blog But You Don’t Look Sick
wrote an amazing blog post called “The Spoon Theory”
that totally sums up what its like to live with Chronic illness. Essentially spoons are a unit of measurement used to track how much energy a person has throughout a given day. Each activity “costs” a certain number of spoons, which might not be replaced until the next day. A person who runs out of spoons loses the ability to do anything other than rest. One of the key components of the spoon theory is that disabled or ill people must plan their activities to ensure that every day is manageable, while healthy people have a “never-ending supply of spoons” and thus never need to worry about running out. Because heathy people do not feel the impact of spending spoons, they may not realize that chronically ill or disabled people’s considerations include mundane tasks such as bathing and getting dressed. For example if you only have 7 spoons of energy for the day, you may not be able to shower everyday or do certain chores because you would use up all your spoons too quickly and have to spend the rest of the day in bed.
As if the symptoms of Lyme are not enough, when you treat Lyme you actually feel much worse before you feel better. This is called a Herx Reaction. Essentially a Herx happens when the bacteria die and they release endotoxins that make you feel really sick. Your body can only detox as quickly as it knows how so these toxins build up in your body until it can get to detoxing it. A Herx feels horrible. All your symptoms double or triple in intensity and you can have new symptoms such as fever, flu like, achey, tired, emotional, anxious etc. The Herx can be a double edge sword. On one hand it sucks and the symptoms are awful, but at the same time it can be a good sign that your treatment is working and that the bugs are dying. On certain treatments you can feel like you are in a constant mild Herx, so you end up feeling worse then you do off treatment for weeks at a time, but again you have to go through this to know you are killing the bugs.
I definitely am coming back to life and am night and day difference from where I was even 6 months ago, but I still have a ways to go, and healing does not come without a lot of hard work and patience. One thing I have learned is that I have to let go and try to not rush my healing. It is a long process and I have to be patient and stay positive that I will be fully healed eventually. Each day is a new day and I won’t know how I feel until I get to that moment.
So the next time I miss a social event or project meeting, its not that I am being antisocial or flaky or don’t want to go. Its that I am worn out from fighting these horrific health conditions, getting poked with needles, sitting in a wooden box sweating or feeling sick from my treatments. Its because I can’t think or process information or I am too sensitive to lights and sounds and have to hide in my dark bed. It’s because I don’t even have the energy to walk downstairs to my desk. It’s because I am waging a full forced war to get my life back from all these bugs that have decided to make my body their home for the past 3 years. Just because I may look like normal Erika on the outside, I assure you on the inside I am far from the normal me.
Please take some time to sign this petition to Legalize Lyme and help Lyme Patients get the care and treatment they need.