Lyme disease is tailored to each patient individually, it’s one of the reasons that it is so difficult to diagnose. For instance, if you had shoulder surgery when you were 10, and you get Lyme when you’re 30, chances are it will attack that shoulder most. It targets where you are weakest.
Not only does this individuality make it difficult to find, but it also can make it all the more isolating, because these symptoms are not your average sickness ones. Instead, they are feelings and sensations that make you seriously doubt your sanity, your ability to survive, your control of your body. And when you try to explain them to a loved one, doctor, or sympathetic ear, it is simply impossible to describe and you are left feeling all the more separated from reality.
For me, there are five main symptoms that have been with me since the day I got sick, and many of them are quite common to tick-borne disease, though they come in various descriptions.
- Fatigue. This is my worst symptom that started this whole journey, the one that hit me over the head saying ‘hello welcome to your new reality’. It is also the one that is possibly the most devalued in severity among all of Lyme symptoms. This fatigue is not the feeling of being tired. Let me just start there. Before I got sick, I would get tired, get the feeling of ‘wow I need to take a nap or lay down’. This is not that feeling. No, before this sensation I never would have considered taking a shower to be exhausting, but now I have to schedule into my day (or week) like it is a marathon. Standing up for that long, using the muscles in my arms to wash my hair, these are things that I used to take for granted as being simple tasks that have been taken away. When I first got sick, this symptom was so severe that I could not walk around my house. Simple as that. I literally would be exhausted walking down to the couch in the morning. If you’ve never had Lyme or some chronic illness, it is hard to wrap your head around this feeling. This feels as if every single inch of you body is full of lead. Like grvity has gotten confused and is pushing you into the ground with all it’s might. It is being so tired that the idea of watching a movie is unfathomable. Of the sheer thought of talking to people, going out to a restaurant- anything other than sitting and doing absolutely nothing- is overwhelmingly daunting and simply exhausting. I can’t even count the number of times that I have wanted to do something with all of my heart, from spending time with someone to taking a walk, and I simply could not due to this one symptom. It is debilitating, life altering, and extremely undervalued in how it feels. It forces you to surrender any control you ever had over your lifestyle, schedule, and body and simply submit to the reality that you are no longer in the front seat.
- Pins and Needles. This is one of my more unique symptoms- it usually only occurs in late stage Lyme/Bartonella/Babesia- but it is by far one of the worst ones. Have you ever sat down for too long in one position and you leg falls asleep? And then, when you move it it gets that feeling like its tingling- but a super uncomfortable and painful tingling. Thats feeling is this symptom, all through my arms and legs. The other way that I describe it is as if there were millions of little bugs crawling just beneath my skin. It is absolute torment. When I first got sick, this symptom was constant, and the feeling was so unbearable that I would punch, scratch and bite myself to distract from the tingling. Now that I have been slowly getting better (a relative term), this symptom is my sign that I did too much. On days that I push myself- whether it be taking too long of a walk or anytime I try to do some sort of yoga- this symptom will flare up for the rest of the day. Often times, on days that I feel I have a bit more energy, I have to choose whether being able to do something I want to do is worth this pain and discomfort that will inevitably come afterwards. There is no medication that has helped this symptom. I’ve tried Advil, CBD, oils, topical treatments, nothing. I just have to sit and wait for it to end when I fall asleep and pray that it is gone when I wake.
- Neurological. Ah the brain complications of Lyme, Bartonella, and Miyamotoi. I had a traumatic brain injury early in my high school career, which has made my head, neck and spine a main target for destruction and pain since getting sick. However, I specifically did not write headaches or migraines as this category, because the neurological symptoms go far beyond that. Yes, headaches are one of my most common and simply annoying symptoms. Not a day goes by that I do not have a headache, I have simply learned to deal with (most of) them. However, over the past three years I have also developed severe anxiety, paranoia and mood disorders. Most of this has centered around my absolute certainty that I was going to die. That at any moment, my heart would become too diseased and I would have a heart attack on the spot. I would- and still occasionally do- have severe panic attacks in which I would hyperventilate, scream, cry and be absolutely convinced I was dying. And you might be thinking to yourself ‘wow, that seems a bit dramatic’, but it is actually quite common for Lyme to infect the lining of your heart valves and cause extreme complications, often times with patients needing to be put on pacemakers. This knowledge, combined with my own personal heart symptoms- extreme chest pain, rib ache, shortness of breath, palpitations- made me completely convinced that I was going to die, usually to the extreme that I needed to knock myself out with prescription anxiety medication. I will have to devote an entire blog post to the phenomenon of entirely preparing yourself for your own death as a 21 year old, but for now I will leave it at that.
- Pain. It is hard to describe the pain of tick borne disease, because it is both physical and mental. Physically, I have the most pain in my muscles; my arms and legs will throb and ache throughout the day. Many nights, this pain makes it merely impossible to fall asleep. When I first became sick, I would have to knock myself out with a high dose of Advil PM just to fall asleep, the pain was too extreme. Now, unless I am having a particularly bad day- which is usually about once or twice a week- I can fall sleep despite the pain with the help of melatonin. But even as I am writing this right now, it feels as though someone is shredding off layers of my muscles with a dull knife, making them continuously throb. In the beginning of my illness, and still on bad days, this pain will go into my bones as well. One clear sign of Lyme is that the pain moves around your body. For me, the bone pain usually moves between my knees, wrists, elbows, shoulders, and spine. I had never had my elbows genuinely hurt, but it feels similar to getting a shot directly into the bone, and it will not stop.
- Emotion. As if this physical pain wasn’t enough, there is an entire layer on mental pain that overlays this with the simple knowledge that every morning I am waking up to a day full of these symptoms. To wake up to the realization and acceptance that you will be in pain and unable to do what you want to is heavy, it weighs on your soul in a way that I never thought possible. There are many instances that I just look at the clock waiting until I can go to bed and end the day. There are days that I don’t want to get out of bed, don’t want to speak to anyone, don’t want to accept what is happening. This is perhaps the hardest symptom to explain to someone who is not chronically ill, because it is simply impossible to comprehend. Going to bed every night knowing that tomorrow you will feel sick, you will feel isolated, and you will have no way of making it better, can be the hardest part of this journey. Simply making yourself get up in the morning and live another day through this hell is a feat in and of itself, and yet we do it. Its hard to wake up every day and have absolutely no idea how you’re going to feel. It makes you feel that your body is not your own. You might think that we would get used to it, but the truth is it is impossible to get used to having no control over your life.
Once again, if you were to walk by me on the street or see me, you would have no idea of any of these things occurring in my body all at once. Each one of us suffering from these symptoms and sensations are suffering behind closed doors, trapped in our own bodies, only known to a handful of people.