Chronic illness makes life hard. Multiple chronic illnesses make life even harder. That has been my experience since I first started collecting chronic illnesses like baseball cards about 9 years ago. (Does anyone collect baseball cards anymore, or did I just really date myself? But I’ve never collected baseball cards, so that’s probably a poor analogy anyway. Beanie Babies? Anyone? My fellow elder millennials?)

I’ve written a few posts already about the medical aspect of a spinal CSF leak. I’ve talked about how my leak started and how the first blood patch went. At this point, I’ve had a second blood patch and it didn’t help a single bit, despite a higher volume of 25 mL. Due to the fact that the patch didn’t work at all, I suspect I have a type of leak known as a CSF-venous fistula. To find it, I need to go to an expert leak center. My case has been accepted by the Mayo Clinic and I will be traveling there in January for expert care.

It’s difficult to express how something like this has completely upended my life when it’s a condition almost no one has heard of. Spinal CSF leaks are currently estimated at a prevalence of 5/100,000, but that is likely a huge underestimate as the condition is grossly under recognized by the medical community.

Let me break it down into easy-to-digest bits to help you understand the true impact on my own life.

Physical Impact

It makes sense to start with the physical impact of a spinal CSF leak since that’s what everyone really cares about.

The back of my head hurts when I’m upright. (This is the occipital area of the head.)

The back of my neck hurts when I’m upright.

The area between my shoulder blades hurts when I’m upright.

Sometimes my lower back hurts (when I’m upright) from where I received the two blood patches.

(In case you haven’t noticed the pattern, the symptoms of a spinal CSF leak are typically most apparent and severe when an individual is upright. These are known as postural or orthostatic symptoms, and are a huge clue pointing towards a spinal CSF leak.)

The pain often keeps me lying flat in bed, in my darkened bedroom. Light is often too much for my brain.

Currently, I am blessed to have a lot of upright time. But some of my fellow leakers can’t even lift their head off their pillow without experiencing excruciating pain. Some have been literally bedridden for months to years.

The pain is predictable, day to day. Not too bad (though often still present) when I get up in the morning, but rapidly progressing to somewhat unmanageable by 1 pm every day. I’m almost completely non-functional by dinner time.

When I say it hurts, I mean it hurts. It’s not a headache. This is pain where it feels as though there’s a bowling ball sitting in my skull. It feels like my brain is being sucked down out of my skull through the foramen magnum into my neck. This is known as brain sag. It happens because when you lose CSF via a leak, there is nothing to cushion and float your brain, so it literally plops down inside your skull and creates a whole host of issues.

Every day, I think, “Maybe today it won’t start hurting.”

Every day, I think, “Maybe today it will stop hurting.”

No such luck yet.

Social Impact

I never get out much due to my POTS anyway. But having to stay in bed, in a darkened bedroom, has eliminated most social activities from my life.

I miss out on meals and socializing with my family. When my leak first became debilitating at the end of May, my daughter, Bean, would throw tantrums if I had to spend dinner in the bedroom instead of at the kitchen table.

Granted we’re still dealing with a pandemic, but I haven’t seen my friends in ages.

I missed a family trip to Wisconsin for a memorial service for a family member, which had already been delayed by a year due to Covid.

I’ve missed out on huge milestones for Bean this summer.

• Going to play on playgrounds.
• Watch her go down the slides.
• Going down slides with her while she’s still little and young enough to want someone to go down with her.
• See her overcome her fear of swings.
• Watch her master climbing on different playground equipment.
• See her interact with other small children for the first time.
• Being able to sit outside so she can splash me with water from her water table.
• Swimming with her in our pool.
• Going on walks with her and her baby doll.
• Blowing bubbles on the driveway.
• Playing ball in the yard.

I haven’t been able to change her diapers since the start of summer.

I haven’t been able to pick her up since the start of summer.

Mental Impact

All of the above have only made my depression worse.

I feel useless.

Without the patches working enough to make me more functional, I often feel defeated and without hope that this can be fixed.

The worst part has been not being able to care for Bean. I’m a stay-at-home mom; I’m at home to take care of her, like I’ve been doing since the moment I gave birth to her. It’s what I’m on this earth to do.

And I can’t do it.

I can’t even pick up a full laundry basket.

While everyone in the family is out doing activities that I can’t do, I sit in my darkened bedroom and cry.

Not being able to do what I’m meant to do has made me feel like there’s no reason for me to be here. (But don’t worry, I’m not going anywhere.)

Why was I made to suffer like this?

All I’ve known since my late 20s is suffering. It’s getting really old now.

💛ribbonrx