Having Lyme disease has altered my life in almost every way imaginable. I have over 40 symptoms that affect me neurologically, cognitively & kinetically (and in a host of other ways).
I have no social life anymore. I don’t see 95% of my friends. I barely have energy to visit my family. I stay home almost all the time. The few times I go out, I worry if I will get into an accident because of my poor judgement; I worry what will happen if I have a weak spell while I am driving; I worry what will happen if I collapse when I am out & about. Leaving the house is so nice when you’re cooped up all the time, but it comes with a lot of anxiety. I feel disconnected from everything and everyone.
Everyday things are hard for me – things you wouldn’t bat an eye at. I get completely winded carrying a laundry basket up my stairs. I have to take a break when washing dishes because my back pain gets so severe. I have to lay down to rest after taking a shower due to fatigue. Changing my bed sheets leaves me a sweaty mess and out of breath, also requiring a lay down to rest. Sweeping the floor, taking out the garbage, or cleaning the bathroom are other examples of easy activities that will over-exert my body.
I’m in pain almost constantly. The worst is my neck; it feels like I have severe whiplash from a bad car accident. There are days where I can barely tolerate turning my head. Other days my neck can be so weak I have to use my hands to adjust my head position when I’m laying down. My back almost always hurts, and the pain migrates from mid to lower back on any given day. My joints are also affected, like I have bad arthritis. There are so many days when I hobble to the parkade after work like an old granny because my knees and ankles hurt so much.
I’ve had to quit all my hobbies and activities that I loved. I miss hockey and broomball, boxing and exercising so much it kills me inside. I used to hate running, but now I would give anything to be able to go for a jog. I avoid going for walks because I never know if my legs will be able to carry me home. At 34 years old, I am the old granny that gets her daily exercise by going out to check her mail.
It literally feels like I woke up in someone’s decrepit old body overnight, like a bad Freaky Friday remake. Or as if my insides had been aged 80 years overnight. This is not my body!! Nothing works right!! Everything hurts!!
Just take a moment to imagine that you aged overnight – to the point where you need home care. Imagine what your quality of life is like in this state. Imagine instantly losing your freedom & independence. Imagine instantly losing your vigor & vitality. Now think of all the life you missed by insta-aging. Think of how many weddings, birthday celebrations & baby showers you miss. Think of all the travel opportunities you have to opt out of. Think of all the career options that have now passed you by. Think of everything else you will miss out on being stuck inside your home as the world continues outside your window. Think of all the memories you will not be able to make & the empty feeling that goes along with that. But picture all this while still being in the prime of your life. It’s a horrible thing to comprehend and even worse to experience.
It’s hard to stay positive and it’s hard to stay happy when you’re life sucks this much. But I’m not gonna give up! I try to find the silver linings wherever possible, and I find every reason I can to smile and to laugh. And I keep hope, that soon things will change and someone will find a cure for Lyme.