Still Standing

Image from @how.u.feeling


If you ask me how I am, I don’t know if you want to hear the truth or just reassurance that I am still trucking along. I don’t want to seem like I’m whining and I don’t want to always be talking about my health issues, diagnoses, pain, and upcoming surgery. Sometimes I need to talk about it though. Sometimes I just need to be heard and validated and believed. I don’t know how to tell what I need in which moment.

I think it scares people even more when I talk about how this all is affecting my mental health. It seems people have an easier time hearing about the concrete medical things and not so much about how I am struggling emotionally. The few weeks after I got the chiari diagnosis and surgery date, I really struggled. I cried every single day. When I tried to talk to friends about this, I got radio silence or uncomfortable words of support. Then there was my dad who told me to go on medication like him. Once I realized how uncomfortable peoole were with this, I stopped talking about it.

Some of my symptoms hurt a lot and some make me feel crazy. They all come and go except for the constant low deep ache in my body and the chronic fatigue. I get a thrumming in my ear now and then, usually when washing dishes or doing something in that same position. If I overdo it physically, which is way less than even normal me could handle, I have an issue where my left leg stops working properly and it becomes very hard to walk. It’s as if my brain can’t get the signal to my muscles and nerves, so the rest of my body has to pick up the slack, which is exhausting.

I counted 103 migraine days in 2019 and so far 5 in 2020. Sometimes they are more typical migraines with deep thrumming pain on one side. But the chiari ones feel like the claw end of a hammer is digging up into the back of my neck/head. Add to that front of head and eye pain, light, sound, and scent sensitivity, and an inability to focus and find words. Yesterday was a bad one that medicine didn’t touch.

All of this greatly disrupts my life. It also makes me feel hopeless and very negative. When the neurosurgeon asked me if I have pain free days, I said, “in my whole body? No.” Woke up with no migraine so here’s to a low pain day where I can function, have fun with my kid, and have a life.

About JennP

Single mom by choice, lesbian, natural living, parenting, car free, Chicago.Thank you for reading and feel free to leave a comment!
This entry was posted in body talk, health and tagged , , , , , . Bookmark the permalink.

4 Responses to Still Standing

  1. mikuwren says:

    I am always here if you want to talk openly and honestly about how you are doing and I will lovingly hold space for your emotional struggles. No judgement here. Sometimes my mental health feels like a daily struggle. Like Im trudging in cement.

    You’re doing so well with Wallace and all your studying and working. I bet people find it hard to believe just how painful this experience is for you.

  2. JennP says:

    Thank you. Having gone so long without diagnosis and validation, I have become adept at making it seem like I’m fine, trudging through and pushing myself beyond breaking. I can definitely see that people might not believe how bad it is. I currently have a cough and coughing makes the pressure in my head and pain in my neck really bad. Some people with this actually pass out from coughing and sneezing. I don’t want to get that bad! But I’ve been declining quickly. I also don’t want to identify as a diagnosis and I don’t like words like fighter or warrior, because I don’t want to fight my body and I don’t want a label to define me. Anyway, email me an update of life with two? And I have been publishing some videos of me rambling about all this on YouTube. There is now a link in the post about it.

  3. mikuwren says:

    That a sounds so tough. Yes I subscribed to your channel. J think it’s great that you’re vlogging this experience.

    Will email you soon. We’re currently in the process of selling the car, giving up the house and moving to Dominica! But I’ll fill you in properly soon x

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s