I have become used to putting on a facade. If someone were to just look at me they would never know that I was sick. I look healthy. People often times say “Well, you are looking good!” and I respond with an appreciative “Thank you.” I do take this as a compliment but when I am having a more difficult day I think “If only you knew.”
The people who have known me for a long time see that I have lost a noticeable amount of weight. This is normally a great thing, which I wish I could say was achieved by hard work and discipline. However, the weight loss is due to Lyme Disease. I am struggling to maintain the weight that I am at and not continue to lose. Never did I think I would say that!
In some ways, I am thankful that I do not look sick for it assists in creating a credible facade. But a lot of times it can be frustrating because people cannot see the reality of my life. Questions that I commonly hear are “So what exactly are your symptoms?” or “How exactly do you feel?” I love and hate these questions at the same time. I appreciate it when people are interested but it can be difficult to explain. But for those of you wonder, I am going to attempt an explanation.
Constant Fatigue: This was probably the first symptom I started to notice back in college. It was an overwhelming fatigue like I had never experienced before without due cause. It was the kind of fatigue I would experience after pulling an all-nighter for a paper or project in college (which I only did a couple of time because it was miserable!), but it was after a full nights sleep. It is rare for me to feel much energy. Sleeping has proven a difficulty as well, so that only makes the fatigue worse.
Gastrointestinal Issues: I started becoming sick after almost every meal. A big culprit I figured out was sugar so I started limiting my sugar intake. This helped but did not fix the issues I was having. Now I am on a gluten free, dairy free, low sugar, and all organic diet (never thought I would be this extreme!). There are some food/drinks that will just knock me out and all I can do is curl up in fetal position. These changes have helped a lot but it is still a struggle. I know these changes in my diet have contributed to my weight loss but it is not the sole cause.
Painful Joints/Muscles: There are some days where any form of movement (and sometimes touch) results in excruciating pain. The mornings are almost always the worst, but there are days that it is more of a dull pain by afternoon. So, I do see treatment working slowly!
Cognitive Issues: For the most part over the past few years, the changes I noticed cognitively were more frequent confusion, foggy brain, slower cognitive responses, very forgetful and just slower in general. As frustrating as these symptoms are, at the beginning of this year I was seeing that I was struggling to form words or sentences at times.
These are the four symptoms I experience constantly and that are the most extreme. However, there are a whole slew of other symptoms that I face. Some are difficult to describe but I always find it interesting how when talking with someone else with late stage Lyme Disease they can finish my sentence and know exactly what I am talking about! It is so refreshing and encouraging!
So, when most people ask how I am feeling I respond with a “I’m feeling pretty good” because it is so much easier then the reality. I get nervous to share with people about how I am feeling because I worry about what they are thinking. Do they think I am exaggerating? Over reacting? Most people (including myself at one time) do not think Lyme Disease can have such a negative affect on people. That it can become debilitating. Chronic/Late Stage Lyme Disease is a big controversy among doctors. I have seen many doctors who say it does not exist and 2-4 weeks of antibiotics will cure it. If the patient still has symptoms after then it is termed Post-Treatment Lyme Disease Syndrome. Which I do not believe is the case. So, I become anxious when talking about it.
I am undergoing long-term treatment and I have seen some progress. But it is slow. It is more of a marathon than a sprint. We are facing a small speed bump in my treatment, but I know the Lord is in control. He has been so faithful. It is only by His hand that I will experience any healing. Even if my prayers for healing are not answered in the manner I desire, I will continue to trust in Him. God does not promise us health here on earth, but He does promise His children that He will be with us. His love is steadfast and He is faithful. This pain my body is in each and every day only serves as a reminder that this world is not my home. This life here on earth, in this body, is only temporary. I will experience eternity with my God in Heaven and there will be no more pain. How sweet that will be!