Living & Coping with Pain
Trigger Warning: this post details symptoms of physical pain and other medical symptoms that may be sensitive to some readers.
It’s been six months since I’ve last written/posted.
A lot has happened during those six months.
For those of you that read my last post, you know that I’ve been dealing with some health issues that have been incredibly difficult to figure out how to treat & find the best doctors to find to treat them.
During this process, I’ve struggled so much with just being able to make it through each day. Work, taking care of my son, being with my husband, hanging out with family & friends, keeping up with household duties, & so on.
I’m physically fatigued almost all of the time. My mind is very foggy most days, like I’m thinking through clouds. I’m nauseous & have sporadic vomiting episodes (sorry if that makes you queasy).
But the worst symptom of all, without a doubt, is the pain.
For the last six months, I’ve been in moderate to severe pain almost every. single. day.
Gut-wrenching, tormenting, agonizing pain.
I’m talking “knocking the air out of your lungs, can’t stand up or walk straight,
one of your organs must have exploded, feeling like you’re being ripped in half” pain.
When you read about endometriosis (which is what my doctors have diagnosed me with), pain is one of the top symptoms that’s listed. But none of the online articles or medical journals I’ve read really describe exactly what that pain feels like.
It’s horrific.
I can be doing something as simple as sitting at my work desk typing away on my computer, & out of nowhere it feels like someone’s taken a metal skewer & stabbed me in my gut.
I can be standing at my kitchen sink washing dishes & suddenly it feels like there’s a knife slicing me from one end of my pelvis to the other.
I can be laying in my bed watching Law & Order: SVU & randomly it feels like someone lit a match & set all of my abdominal organs on fire, while someone else rips each of my ovaries in half, & the blaze lasts for hours.
I know that this is graphic & may be hard to read for some, but it’s the truth.
That’s the type of pain that I feel.
That’s the pain that I’ve been living with for the last year that’s only worsened over the last six months. Lasting for days on end, giving me a short break before the next wave hits.
I don’t want to eat, I can’t do the grocery shopping, I can’t play with my son like I want to.
Cooking dinner is tough, cleaning the house is even tougher, & getting through the work day is hell - & I have a work-from-home job.
I don’t go to social outings as much, & when I do it’s an entire production.
“Heating pad - check. Pain meds - check. Nausea meds - check. Exit plan - check. Anxiety - check.”
I’ve gone to the ER more times than I can possibly count over the last year for help with controlling the pain - so much so that the physicians & the techs are starting to know me by name. & each time, it becomes more difficult for the doctors to get my pain controlled enough to discharge me so that I can walk upright out of the hospital.
I could go on & on for days about the physical pain that this disease has caused me, but it doesn’t only affect me physically - it’s taking a heavy toll on me mentally & emotionally.
The depression, the anxiety, the fear that the pain brings with it is almost indescribable.
I get lost in my thoughts of not being good enough anymore for my family & my friends.
I’m always anxious & fearful about when the next wave of pain is going to hit & derail my day, my week, my work, my plans, & the plans of my family.
I’m battling more feelings of inadequacy, low self-esteem, & low self-worth.
I’ve had more panic attacks over the last six months than I’ve had in the last six years.
At random moments, I’ll find myself being covered with this flood of a combination of grief, anxiousness, sadness, sorrow & dread that the pain will never end. All I feel is darkness & it swallows me whole.
I guess I said all of that to say this: pain has become both my norm & my hell.
I’m constantly being encouraged to “keep my head up”, “just hang on”, “stay optimistic & hopeful”.But how does one actually do that? Keep their head up, weather the storm, stay positive when they’re experiencing some of the most excruciating pain they’ve ever had in their lifetime?
I don’t have a simple answer for that (because there isn’t one),
but I have learned a few things that have been really helpful in the meantime.
With a lot of help from my family, friends, an online support group, & my therapist.
Use your support system to the fullest.
If you’re anything like me, you’ll feel like a burden to your family & your friends. You won’t want to ask them for help or add more to their plate, & you won’t want them to look at you like you’re always bothering them with something. But the people that really love you don’t see it that way; they want to be there for you, so let them. Lean on them for aid & assistance, let them help you with daily tasks, share your feelings with them & let them be there for you just like you’d be there for them if the situation were reversed.
It’s not pity - it’s love.Let yourself be human & give yourself grace.
I used to get upset with myself when my thoughts & emotions got the best of me, until I realized that it wasn’t serving me any purpose or benefit. The only thing it was doing was spurring on more depression & anxiety. Give yourself grave - who wouldn’t have those thoughts & feelings if they were experiencing your specific type of pain? If someone says they could handle your pain better, they’re a liar - no one knows your pain better than you do. Even when it feels like your feelings are going to swallow you down into that black hole beneath your feet, let yourself feel them while they flow & as they pass.
Embrace your positive and painful feelings because they’re still yours & they’re earned & genuine.Grab hold of whatever brings you solace, joy or happiness & don’t let go.
This was hard for me to get into a rhythm with over the last six months; I felt like I couldn’t do the things I liked or have the things that made me happy because I didn’t deserve to or my pain was just too overpowering. But I’m starting to learn that despite my pain, I have to grab hold of the chances where I can play with my son & be bathed in his smiles & laughs. I have to take advantage of the opportunities I do have to do my favorite things with my husband. I can get lost in books, take hot baths, laugh with my mom & sister, & go hang out & have a great time with our family when I’m feeling well enough. You have to remember that even though you’re currently immersed in pain, you still have people, places & things that you can rely on for even the smallest moment of joy - grab hold of them tight & don’t let go.Search for the right professional help & don’t give up until you find it.
I’ve lost count of how many doctors & specialists I’ve seen over the last year (although I know the number is at least over 20) & so many of them had no clue what the hell they were talking about. I got to a point where I was tired of seeing new doctors, & I’ve developed severe medical anxiety because of this entire ordeal. But once I did find the right team, it made a significant difference. It doesn’t matter if it’s a medical provider if your pain is physical, or a mental health provider if your pain is mental or emotional - find the right professional (preferably a specialist in their field) & work closely with them during your healing process. Play an active role while working with them & don’t hesitate call them out & advocate for yourself when needed.
Dealing with pain isn’t something that you can or should have to do on your own, so don’t.
Like I’ve said before, I’m not arrogant enough to presume that I know all the answers about things, but one thing I can say with 100% certainty is that being in pain can derail your entire life if you let it. & it is very tempting to let it - to just say fuck it & throw in the towel. Let the pain take over. But I’m also learning (even as I’m writing this) that there’s only one thing more powerful than pain:
Me. You. Us.
I can do this. YOU can do this.
Just don’t give up. Don’t let the pain win.
♡