A Day of My Life with Pseudotumor Cerebri

Living with a chronic illness and chronic pain means that some days you’re feeling great, other days you’re laying in bed in pain, and still other days you’re feeling somewhere in between that spectrum. I’ve previously shared that I have a condition called pseudotumor cerebri, which though I’m on medication to control, does affect my family and I on an occasional basis and is extremely frustrating. I figured I’d give you a glimpse into what a bad day typically looks like for me – complete with the thoughts that ran through my head – as I dealt with daily life on what was the 12th day of my latest episode in life with pseudotumor cerebri.

A Day of My Life with Pseudotumor Cerebri

• 5:30 a.m. – I awake to the sound of my husband stirring in bed as he gets up for the day. My eyes have yet to open, but already I feel the wave of dizziness and pain hit me as I lay flat in bed. I wait a while before I sit up (slowly) and eventually make my way out of bed, bracing myself as I walk.
• 6:20 a.m. – As I work on finalizing the kids’ lunches, the standing and walking back and forth has caught up to me and I’m once again hit with another wave of unsteadiness. I brace myself, shake off the lightheadedness, and wrap up the morning routine.
• 7:00 a.m. – Baby boy and I are on our way to his school. Driving with a headache and being nervous that another wave of lightheadedness will rear its head as I drive is no fun. It’s concerning, of course, but it’s unrealistic to have my husband once again take time from work to do the daily school drop-off and pick-up. He’s done so too many times over the last two weeks.
• 9:20 a.m. – I attempt to get some work done, but it’s hard to focus. A task that normally takes me about 20 minutes, has taken me close to an hour. Staring at the computer screen takes extra effort and often comes with waves of dizziness, though I’m sitting still. Just thinking takes extra effort, so imagine the amount of energy it takes to form words and write an entire blog post.
• 12:00 p.m. – I take a break from the computer to eat lunch. Getting up to go to the kitchen and make myself food becomes a task I find myself once again crying over. I cry because something so simple has become incredibly difficult on days like these. I cry out of frustration, anger, and if I’m being honest, self-pity. Sure, I’m not supposed to feel pity over this situation. It could be worse. It’s temporary. I could feel better tomorrow. But, in that moment…I feel it all.
• 2:10 p.m. – As I’m driving in the car once again to pick up my baby boy from school, I pray the entire time: “Dear God, please let me make it there and back. I just need 20 minutes. Then I’ll lay down again.”
• 3:15 p.m. – My sweet son is wrapping up his homework and telling me about his day at school as I lie down on the couch. He offers to get me some water and I’m overcome with guilt because this has become the new normal for him and his older sister. Will this be the memory of me ingrained in their minds – me sick lying down on the couch as they fend for themselves after school?
• 5:00 p.m. – My husband and baby girl arrive home and upon seeing that I’m not doing well, begin to prep dinner and the evening routine. My husband finalizes the food I had begun earlier in the day, while the kids set the table and clean up their school stuff. Teamwork has never meant so much in our family.
• 6:30 p.m. – Our evening routine begins to wind down. I’m once again reminded how incredibly lucky I am to have such a supportive husband. I know this is what he’s supposed to do. He’s supposed to take care of his family and handle responsibilities like helping the kids with the evening and bedtime routine. He tells me himself: “for better or for worse, in sickness and in health,” but sometimes it feels like this is more than what he signed up for when he said “I do.”
• 8:15 p.m. – I say goodnight to the kids and sing their bedtime songs. It takes every ounce of my being to stand next to their beds as I do so, without feeling like I’m going to fall. My oldest gently strokes my hand and asks if I need anything. She tells me to get some rest and feel better. I hold back the tears.
• 10:00 p.m. – I shut down for the night and hope for a better day tomorrow. It’s been 12 days of this episode so far, so I’m hoping the effects begin to fade soon. It would be nice to start feeling like myself again and get my family back to a normal routine. I’m tired of the pain, tired of crying, tired of feeling angry, but mostly, I’m tired of feeling like a burden on my family.

My life with pseudotumor cerebri is not always this bleak. I’m not always feeling this blue nor am I crying on a daily basis. Even on days that I have pain, I have varying degrees of pain, which of course affects my mood. This day happened to be a particularly bad day. Such is my reality, which I’m learning to deal with…one day at a time.

All photos © Melanie Edwards/modernmami™