Life With Pain

When I was first diagnosed with chronic daily headaches and migraines, I didn’t understand what it meant. It’s so much more than endless pain. Sometimes, it’s being woken up at four AM by the excruciating drilling pain of a cluster headache, and firmly deciding to be “okay”: mentally, emotionally.

I didn’t know that chronic pain would mean experiencing sometimes-overwhelming disappointment when a treatment didn’t work.

I didn’t know that it meant learning to let myself rest when I needed to.

I didn’t know it meant having to deal with disapproving relatives. Disapproving doctors. Hundreds of tests. Hundreds of different opinions, and very few options. Missing Christmas dinner. Missing the family reunion and birthday parties. Losing close friends, because they cannot understand why I keep canceling plans.

I didn’t know that chronic pain would mean feeling guilty for having pain. Feeling like a heavy burden on my family because of my inability to work, or to even do the dishes. Feeling completely exhausted. Feeling completely overwhelmed with sadness. Feeling so angry at myself for not being able to do more.

I didn’t know about all the different types of headaches I’d experience — horrible, cyclical cluster-headaches, icepick headaches, sinus headaches, the monthly menstrual headaches which can leave me incapacitated for days, nausea-inducing migraines — all on top of my normal, already-painful daily headaches. I didn’t know that sometimes, all of these would happen at once.

I didn’t know that I’d feel so alone.

I didn’t know that thirteen years would pass by, and I’d still have no answers.

I didn’t know that, at twenty-two years old, I’d feel so broken by pain.

5 thoughts on “Life With Pain”

  1. i know what you mean by the headaches because i get them and sometimes i used to smack my head off the wall or fall asleep to get rid of it.

  2. God love you both! I was diagnosed over eight years ago with Hemiplegic migraine. I too suffer in chronic pain and I now the plight that you are both speaking of. It is so difficult to explain to others when disease and chronic pain take over our lives! They have no idea what it’s like to live suffering in silence. There are no big parades or pink ribbons for those that have neurological diseases. We do have each other and are luckily I have a very close family and a loving husband who takes care of me. God bless you and sending you both the very best of treatment and healing!

  3. I feel for you. One day I will write my whole story, but it has been going on since 2000, yes, 16 years of chronic headaches, knee, shoulder, elbow, wrist & finger joint pain, lower back pain, chronic migraines and neck pain, ear and eye pain from several rare dx, and most currently a minicrainotomy w/ skull grafts, that brings on new kind of heaf pain, along with strange knocking sounds in my ears which is annoying, tiresome and debilitating some days.

    I have been feeling guilty for years because my issues have severely affected my ability to work in the last few years. Yet, because I am seen as happy, young, and able to move, it must all be psychosomatic or not as painful as I am letting on. So frustrated with the medical field and trying to act as if I feel just like everyone else. I just hope family and friends start realizing what is going on.

    I wish you Perfect Positive Peace and am sending comforting energy your way. Hang in there! Just remember, there are many here who you can talk to. ♡

  4. WHAT IF?
    What if I never took that bite of beef jerky that wrenched my jaw and started all this.
    What if I didn’t take every necessary step to find a cure for relief and listen to every doctor that had no idea what to do but they still got paid and then forgot about me. But I continued to search for answers and cures only to have Rhyzotomies cause unbelievable side effects.
    What if I did not have the Micro Vascular Decompression performed. That did something to my mind but not according to any doctor with an opinion.
    What if that fateful day 3years later I did not yell at my coworkers and be accused of serious work related offenses and then go right on performing my occupation as the best in the whole company at the time. Though I do not remember a thing that happened as they say but as I was told of my ill advised actions the next day things slowly came back to me and I profusely apologized. Senior management did not see it that way and after months of accusations accompanied by beligerence of pride on my part we signed a Separation agreement and I was paid a years salary to shut my mouth.
    What if they helped me and understood what I was going thru.
    What if all those people who were my friends would have said anything or even be anywhere on my radar 14 years later.
    What if people stopped looking at me and wondering why I am not working. I look extremely healthy except for the 15 times surgery was performed to either help or try to correct a prior surgical procedure that would stop the seizures, lightning bolts and constant fire in my face.
    What if people were patient with me and offered me a chance to be productive with anything.
    What if all those Friends of mine that were so close to me were still around.
    What if they helped me feel better instead of asking how I feel.
    What if my spouse was doing terrible things at work instead of the fantastic work she does and is the kindest person in the world but cannot help me.
    What if they let me stay on opiods and alcohol to curb the pain.
    What if I didn’t beg for help and say stupid things so they locked me up as a suicide threat but knew I was asking the only way the self induced medications let me.
    What if I were still on all that crap that eased some pain with the more ingested.
    What if the cornea of my eye wasn’t damaged so I could see, driving without endangering others would be nice.
    What if the friends I cared about would check in sometime.
    What if I didn’t have a Motor Cortex Stimulator, would the pain be worse, I can’t imagine.
    What if I didn’t have hope faith and love restored.
    What would my headstone say?

Leave a Reply

Your email address will not be published.