Slowly the room comes into focus. Blinking once or twice, I stretch my arms over my head as I try to assess how I’m feeling this morning. Is my headache still raging? Are my knees still aching? Can I feel my hands and toes? As my alarm begins blaring again, I rip the warm covers back and place my cold feet on the wooden floor. It’s another day, and I’m never sure what’s in store.
After waking, I shuffle from my bed to the bathroom and I can feel every ache in my body, starting from the feet up. The running probably doesn’t help, but some of the pain I know is from a tired body, one constantly fighting against itself.
When I look in the mirror, I see the same me I’ve seen for years staring back. I certainly don’t look sick, I tell myself. Maybe my face is a little paler than most, my hair thinner than it’s ever been, but to anyone out in the world, I look normal. Most people don’t notice the trembling in my hands when I’m helping them at work, or how I drop boxes all the time because I can’t feel my fingers. Most people don’t know when I’m smiling and trying to act normal I often have a searing headache pulsing in my skull, and light sensitivity so great when I turn to look out the window the pain radiates through my head like a lightning bolt.
Morning means my first dose of medicine. On any given day I have about 14 different medicines/supplements I need to take, all spread out from breakfast to dinner. These days, I’m grateful not to be on the three antibiotics anymore, which often made me feel like a zombie, and sometimes forced me to stay in bed. As much as I wish I could say I am used to taking my medicine (I’ve been in treatment for about four months now), I’m still not. I hate dragging the bottles around with me everywhere I go, like some new appendage on me impossible to hide. I feel ashamed. I feel as if my illness is something meant to hide. Growing up, I wasn’t taught to show any vulnerabilities – I was taught to be strong, even when I didn’t feel it. Toting around pills, avoiding certain foods, opting out of outings with friends because I’m not feeling well – I despise having my weaknesses written on my sleeve for all to see.
On average, by the end of the day I’ve usually taken 16-18 different pills and about 149 drops of several liquid herbal medicines. These are the good days I actually remember to take everything. There are other times where I’m much more forgetful and pass out in bed after a long day of work without taking my final doses. There have been other times where I feel a sense of sadness from all the pill popping, and in a day or two of denial, I don’t take any medicine. Those are always the worst days.
To top it off, I’ve been very forgetful lately. Sometimes, I’ll be telling myself over and over again a task I need to do, and in the process of getting ready to do whatever is needed, the thought slips from my mind like an elusive shadow sneaking back into the comfort of the dark. The brain fog is heavy. I see the world through clouded lens and often feel like I can’t put together sentences or see things right in front of me. This is probably the hardest part, especially for writing. As someone who used to have the words flow so freely from my mind, I struggle the most with not being able to articulate my thoughts as clearly as I used to before I got sick.
When I was first diagnosed, I tried to hide behind a mask of normalcy. After all, this isn’t my first go-round struggling with an invisible illness, so I know the song and dance well. In the past when I struggled badly with depression, I always wanted to appear happy to others even when I was in an incredibly dark place. I hid it so well I went years without help. Until I finally broke.
I wear the same constricting mask with lyme because I don’t want people to know I hurt. I don’t want to be seen differently. But more and more, I am taking this mask off and letting myself breathe free. I don’t want to break again. I now know, unlike I did before, it’s okay for others to know you’re hurting or struggling. It’s okay to need help.
For the first time in my life I’ve spoken freely about my struggles. And what I’ve discovered by being so open is I have a lot more support on my side. Even when I’m having an off day, instead of wallowing in self pity I’m more apt to give myself a break. Sometimes I have to laugh at myself, especially with the forgetfulness, even though it frustrates me to no end. Laughing is an important part of my recovery. It keeps me grounded and helps me realize what’s most important in life.
So, while every day may present a new challenge, I’m up for it. Training for my 57 mile run scares me, but that’s how I know it’s so important. This event is going to change my life, and I know I won’t be the same person 57 miles later when I enter Bucknell’s track as I was earlier in the morning, standing on Penn State’s track. This change will be good. And raising money for Global Lyme Alliance may help change the lives of many others struggling with lyme and struggling to get a proper diagnosis.
There are many invisible illnesses out there and this is just my story. But there are so many others wearing masks just like me. And while we try to hide these weaknesses and appear “normal” (whatever normal really is), dealing with lyme has helped me find a strength within I never knew existed. I am stronger than I ever have been before.
And from here I’ll continue to grow.
© Allison Donaghy 2017 All Rights Reserved