I am all about using my experience to raise awareness, and let other know that they aren’t alone. I am choosing to put myself, my journey, and my life with a tick borne illness out in the public eye. I am hoping, not to just add to the “commiserating conversation about Lyme”…. yes, that is how it was worded the other day in regards to blogging about struggles with Lyme. I am hoping to maybe help someone battling through their own fight with Lyme. Maybe there is someone out there that has NO idea that Lyme is what is riddling their body with pain every moment of their day. Maybe, just maybe, there is someone that this can help, whether directly related to Lyme.. or someone fighting their own battle of some other means.
Part of the symptoms that I struggle with right now has caused some isolation in my life, for a couple of reasons. You see, I never thought I would get to the place to where sunlight would cause physical pain and discomfort. I never thought I would get to the place to where I couldn’t really leave my house, unless overcast. Even when it’s overcast I have my struggles. A day where a simple car ride became… complicated.
My light sensitivity has reached a new high…. well, it reached it almost 4 weeks ago now. If I go out when it’s bright, and my definition of bright is WAY different than what your definition of bright is, I have such a hard time. It causes physical pain in regards to my headache and photophobia. It also causes my ticks and shaking to become very exaggerated, and uncomfortable. It’s like my body doesn’t know what to do, and my ticks and shaking are its way of coping with everything going on around it.
Along with the photophobia, I never thought a car ride could be overwhelming. I also have an extreme heightened sensitivity to noise.. I do believe it’s called hyperacusis. You know that regular old car ride you take to the store? Nothing major going on around you right? Wrong… so very very wrong. There is so much going on during that ride, that I sometimes feel like I’m going to lose my mind. The road noise, the cars, the chatter in the vehicle if the kids are with us… add in the sunlight/bright sky/light, headlights, streetlights, sign lights. By the time we get to where we’re going, I sometimes feel like on the verge of physical collapse. It is so completely overwhelming to my senses. I have a very hard putting into words how it feels… the struggle that is now a simple car ride.
We have made our home a “safe place” for me. We allow the kids to be kids, and I go in my room if it’s too much…. after all, they don’t deserve to be “punished” for what I’m going through…. but we try and live our lives the best we can. We keep the light level to where I can cope, and function. Our bedroom is kept as dark as we can right now, so that if I need a place to go and calm my head and body… I can. I have dimmers on all of my devices, to ease my eyes. Our home is a place where, with the help of everyone in our family, I can try and be at peace. A place where I can try and rest my body. A place that doesn’t trigger ticks and shaking, though it’s inevitable. While my treatment has already started to calm down my ticks and shaking a lot of the time at home, it’s going to take some time before it calms down when we’re out. We will have to get to a place to where my sound and light sensitivity are no longer triggers, and my body is beginning to heal itself…
With this new place comes a new set of emotions, and it can be tough to deal with. I can’t go shopping anymore, though shopping has gotten challenging in itself. I have only been out of our house 4 times over the last 4 weeks. This isn’t a case of.. I’m “just being lazy” or “You just don’t want to go out of the house bad enough” or “You know, the sun is good for you” or or or…. Yes, these are things that people who struggle with tick borne illnesses, and people in general, who struggle with light and sound sensitivity have to face. No I’m not being lazy! I know the sun is good for me! I’m am a very “outside” person… I would live outside if I could… I love my fresh air. I love my sunshine. I love spending time just being outdoors. So this adjustment has been very hard.
I sort of feel like a prisoner in my own home. Not just a prisoner in my body now… as I often describe it to Kenny when I am dealing with my episodes…. but in my own home. I can’t really leave. And you don’t understand… this isn’t a matter of “not wanting to leave bad enough” or “making excuses”. You don’t understand…. I CAN’T leave. I want to…. but at this point in my life, path and treatment… I just can’t.
So please… spare me the “you should just get out there” or anything else like that, that might be itching to dance its way off your tongue. Until you have spent time in my body, or in a situation like mine, and you understand the detriment and consequences of what going out means to me.. Please…… just try. Take a step back and try and consider what might be going on for this person. Thinking about these types of things can be uncomfortable, I know. Just do me, do us, a favor and just try. The words you mean out of kindness and love, just might be laced with blades that cut more than you know. We are prisoners in our situations until, and if, we can get the help and treatment we need. We didn’t CHOOSE to be put into these shoes and deal with the “joys” of our symptoms. Our bodies are racked with pain, infection and toxicity, to a point that we don’t know which way is up or if we will make it through this in one piece. And this isn’t directed at anyone in particular but these thoughts and feelings are shared by many fighting Lyme disease, any tick borne illness and other chronic illnesses…
There is grief in all of this. There is anger. There is pain. There is so much that you deal with as you walk this path. More that I will discuss in another post, but for now….. I am where I am, and I can’t change that. It is my life, and part of my journey. I miss my grocery shopping trips with my wonderful family. I miss popping out for coffee on the weekend with my amazing husband. I miss going to the park with the family. I miss garage saling. I miss…. I miss freedom… I miss life…..
It is a walk that I face each day. Some days I feel strong and like I can fight through anything. In other moments I feel so weak that I have no idea how I will make it through to the next moment. Lyme, and any tick borne illness, can be a very lonely place to be. Isolated by your situation, symptoms and health, but also isolated by a world that lacks understanding, knowledge, empathy and acknowledgement of how destructive this disease can be. It is a sad reality to live, but it is the reality of many.
So, if you are struggling through your own path of tick borne illness…. hang in there. Know that you’re not alone. Know that there are so many of us out there that are fighting our own silent, or not so silent, battles. One day we won’t have to fight so hard to defend ourselves, and we will be able to fight to get our lives back instead. And for the caregivers…. thank you for those that take care of us, those people that we can never thank enough. Those people who have stayed by our side through some incredibly difficult moments.
If you question “how this can be” or whether it’s just “psychosomatic”… please….. before you decide that this is the time to spew forth your opinion of how “it’s all in our heads”, take pause. Please… consider for a moment the life you are seeing, or reading about, that is riddled with changes, pain, loss of family and/or friends, and so much more than you may ever know. Consider what this person has to deal with every day. Consider the fight they have to face each day of just finding treatment, without you adding your “good intention-ed opinion” to their continued struggle. I often wonder if people understand the power of words. The power those words can hold is tremendous.
Don’t you think that life is hard enough of a battle, without a chronic illness? And then you decide to step in tell us that it’s in our heads, or isn’t real? I completely understand that when something is hard to “pinpoint” that is can be hard to relate to. When something isn’t know very well, it can be easy to brush off. If it were cancer, or leukemia, or MS, or whatever… something, anything, other than Lyme… it would be easy to “get” and “support”. This is not the case though, and so many people have zero desire for it go any further than it simply being labelled as psychosomatic. This is a sad place to be when you’re looking Chronic Lyme, and any tick borne illness, in the face. So please… just remember the life, or lives, that have been changed by this wretched disease. Maybe instead of labeling us a crazy, or needing mental health, or have a personality disorder.. that you could at least try to understand.
We’re here, and we’re hurting. All we want is for people to understand, or at least try. We have hope that the future will be different. We have hope that we will find help and healing. We have hope that one day this won’t feel so much like a journey of isolation. We have hope that we can band together and fight this horrid disease.. and we will win. There are too many lives being lost, and too many torn souls, to not. We have to win. We must win.