When I began treatment 6 months ago, I made a decision to share my successes publicly, via social media and blogging, with my friends and family. I had hoped to paint a picture of someone who could overcome the adversity in her life and emerge changed and victorious. The truth however is that recovery is very tricky, with lots of twists and turns along the way. There is much trial and error involved in finding a treatment strategy that will yield even slight improvements. I often do not post about these difficulties, shielding my friends and family from seeing the full spectrum of just how destructive this illness is. After reading a recent statistic from the online medical journal PLOS that Lyme Disease is 6 times more prevalent than AIDS in the US, I knew I had to convey the most realistic image of what battling Chronic Lyme Disease is really like. With Lyme Disease becoming a global pandemic, my story could very easily be the story of you or someone close to you. So here ya go. The 9 truths about this illness you won’t see mentioned on my Facebook page…until now.
1. I am still homebound more than 75% of the time.
Since I have chosen to really only reveal the moments that I feel are celebratory in nature, no one sees the moments where I am too weak, fatigued or in too much pain to get out of bed for days and sometimes even weeks. I am not a partaker in the selfie craze and don’t post sick picks. Believe me! Although you are not seeing pics of me in the throws of my illness, I am still very much in the midst of fighting this battle and unless remission comes to pass, I will likely be fighting it for a very long time.
2. I am still very isolated by this illness
As you can imagine, since I am primarily homebound, the majority of my time is still spent alone. Only on a rare occasion will I feel well enough to see someone in-person. I don’t say this to invoke pity but rather to encourage those who may know someone who is chronically ill to reach out to them from time to time. It does not require much. Just let them know they are still cared for and not forgotten.
3. I wake up everyday, take inventory of how I feel and decide if there is enough fuel in the tank to do something or go somewhere.
Most of the time there is not. The days I feel bad still outweigh the days I feel good. Instead, I stay home and try to come up with creative ways (like blogging) to pass the time until a day comes that I can “do” something again- which is an excellent lead in to my next point.
4. I often have to give myself a pep talk just to get out of the house.
Fatigue, pain, a burning brain and spinal cord are constantly present. Somedays I have the capacity to tolerate this and can rally myself to go out for a few hours here and there. These times are still in the minority though but I hope with continued treatment, leaving the house will one day be something I can do without much thought.
5. You will likely not be able to tell if I’m having a “good day” or a “bad day” by a photo.
Oddly enough, some of my best pics were taken on the worst days. This is most likely due to the fact that knowing I felt so ill, I made my hubby take 25 pics before I finally found one that I deemed “postable.” If you saw the other 24, you probably could guess I wasn’t feeling well that day.
6 The road to recovery is actually quite bumpy.
There is no one-size fits all approach to treatment. Some use IV antibiotics. Others take oral antibiotics. Still others, myself included, are using a combination of medications, supplements and herbal antimicrobials. Nearly all of us will see several doctors over the course of our illness and try various treatment approaches until we hopefully find one that begins to get us on a healing path. Even when we find a suitable treatment we must contend with recurring Herxheimer reactions, or Herx for short. This is a sudden and exaggerated inflammatory response caused when injured or dead bacteria release their endotoxins into the blood and tissues faster than the body can comfortably handle it. An exacerbation of old symptoms, as well as a flare up of new symptoms, can occur. The very treatments that aim to make us well can, for a period, make us feel much sicker.
7. Bizarre symptoms pop up almost daily.
When my brain starts burning, that’s weird. When my facial muscle starts twitching, that’s annoyingly strange. When I awake in the morning to an ankle that feels like it was broken sometime during the night, that’s just bizarre. The sudden and exaggerated inflammatory response that I spoke about in number 7, can cause a wide range of migrating and unpredictable symptoms. Be glad I do not post those on Facebook. You would not be able to keep up with them!
8. Lyme Disease treatment is most likely not covered by insurance and patient’s are forced to pay out-of-pocket for some or all (in my case ALL) of my treatments.
Yes, you read that correctly. I have paid out-of-pocket for every single doctor’s visit, lab test, medication, supplement, herb and Lyme treatment I have received for the last 4 years. Sadly, my scenario is not uncommon as Lyme Disease places an enormous financial burden on those of us who have it. This sum of money amounts to hundreds if not thousands of dollars per month depending on the treatment a patient may be undergoing. 43% of us are not able to work (myself included) due to the severity of our illness making the financial strain even more stressful.
9. Despite me being ill, my husband is still as lucky to have me as I am to have him.
In the last few years, I have had several people make the comments to me, “You are lucky your husband stays with you.” or, “You are lucky to have him.” Yes, those statements are true, however I am not less of a person because I am ill. I still have the same heart, interests, sense of humor, etc. We still spend hours supporting one another and making each other laugh to the point of tears. My husband does not look at me and see a sick person. He sees me and notices that my uniqueness has not disappeared.
Well, there you have it. The inside scoop. An honest look at what living with Chronic Lyme Disease is truly like. You will likely not see these topics appear on my Facebook page anytime soon, but know that my journey is far from over. The very essence of having a chronic illness is that it is invariably, going to recur again and again. Ingrained in me is the desire to persist so I will still continue to fight in the hopes of one day achieving a full recovery. I look forward to celebrating many more healing milestones and experiencing life in full again with my friends and family.