The bane of my existence. Threevil. My demons time to come out to play. I lie in bed. I toss and turn. I’m hot, then cold. I’m so tired, but can’t sleep. My brain hurts. My body aches. Everything is turned up to a ten. Or eleven. My pain scale goes so very high. I would weep with joy for a nine. For a few blessed hours of real sleep. REM sleep. Restorative sleep. Dreamless sleep. Or at least no nightmares. Terror-filled nightmares of pain and suffering that jerk me out of sleep. My heart pounding. Soaking wet and shaking with fear. Half remembering what I dreamt of, praying to forget the rest. But I wake to pain as well. There’s no escape, even in my dreams. I used to dream of wonderful days and events and experiences. Happy times. But my demons took that away too. Along with my ability to work, travel, go to a movie, concert, or see a play. Even on those rare, treasured days that my pain is bearable (6 or 7), I stress so much about being out and unable to cope that I wind up staying home. My safe place. My controlled environment. Not to say there’s no pain at home. But I have my blackout curtains, my meds, ice pack, heating pad, TENS unit, headphones, and my emotional support furbaby Samantha. I’m as close to comfortable at home as I can be. So. Back to 3 a.m. When my thoughts run wild, the negativity and doubt cannot be buried or pushed away. I cry from the pain, the loneliness, the fear, the lost days. The demons laugh. They’ve won this round. I’m too tired to fight. Maybe tomorrow. Carry on. 

I can talk until I’m blue in the face about how I feel, but to no one really understands unless they’ve been there themselves. I can tell you that I don’t sleep without waking every several hours to throbbing pain and nausea. So sick, but unable to get up for meds or to get to the bathroom. Again, you have to have lived it to really get it. About how I feel so alone in these dark, pre-dawn hours when most of the world is asleep, but I’m sitting here. Alone and scared and in pain. Just a prisoner of my own thoughts. Dark thoughts of never-ending pain, lost friends and family that ducked out years ago without saying a word. They couldn’t handle my illness, my demons. Well, neither can I! But I have no escape. They are with me 24/7. Permeating my brain with thoughts of sadness, loss, memories, impossible dreams, false hopes. They taunt me with what once was, and laugh at what I can no longer have. I tamp them down, deep down. I think positive thoughts. I concentrate on what I CAN do and what I AM doing. I meditate, I do my breathing exercises, I visualize where I want to be and what I WILL do one day. Eventually, most nights, I feel a peace come over me. A calmness. The pain RECEDES to a more tolerable level. I can breathe again and possibly fall asleep. My demons remain, but they are not as loud. They’re muffled, but not silenced. They slink further back into the recesses of my brain, but sporadic stabbing, throbbing pains in my head remind me that they are still there. They won’t let me forget. They don’t sleep. If you look closely, you can see them in my eyes. The pain-filled features on my face, that’s them. The flinching, ducking, covering my eyes from the light, that’s them. The cringing and jumping from loud noises; them. But for now, for this period of time, however brief, my positivity temporarily overpowers their negativity. I’ve won! For now. It’s a small victory, but still a victory. It’s a daily battle. I’m fighting good (me) versus evil (them) every single day. I’m a superhero of sorts. I am a chronic pain warrior! And I will win this fight! Carry on fellow warriors! Carry on and always keep fighting! 💜 

So. It’s 4:00am here. I’m sitting in my living room chair and my mind is racing as it tends to do. I’ve been up all night once again. Combination of pain, anxiety, and nightmares. My hat trick (hockey ref). It’s been a rough week. I’ve had multiple appointments and errands and actually managed to get them all done! Yay me! I’m not being sarcastic. I know, shocking right?! I’m actually proud of my accomplishments. I pushed myself hard to get everything completed and I’m feeling pride in myself. And that’s okay. My normal feelings haven’t been positive lately and I’m giving myself a break. It turns out that the little things really aren’t little. I did more last week than I did in the last 3 months or so. I didn’t feel any less pain, I just pushed through it. That’s not always possible, as I’m well aware. I’ve been an emo mess lately and the guilt, depression, and worthless feelings were taking over. I didn’t want to leave the house. I was exhausted, physically and mentally. I cried a lot. I over ate and hated on myself. So to be able to say that I accomplished everything I set out to do last week is big. Really big. And it gives me hope moving forward. One day at a time. Carry on my fellow warriors. Carry on. 💕

So. I’ve been busy going to various doctor appointments per my new internist. We are trying to rule out issues like anemia, low vitamin D, hypo or hyperthyroidism, Lyme disease, etc. I want my illness to turn out to be something we’ve previously overlooked and that can be cured or maintained with a daily pill. Wishful thinking. I’m glad everything has come back within normal limits or negative, but I’m also somewhat sad about it. I went back to the rheumatologist that I saw in 2008 and again in 2013. Dr. T. did a thorough rheumatologic exam. He also reviewed the extensive bloodwork that the internist ordered. He ruled out rheumatoid arthritis, Lupus, and or any other degenerative rheumatologic issue. Thank goodness! But that left us once again with Fibromyalgia (as a diagnosis of exclusion) as it had previously. I do have many symptoms of Fibro. The traveling joint, muscle, tendon, tissue pain and soreness, tender points, extreme fatigue, brain fog, etc. I tried Cymbalta with horrific results. I detailed that wonderful experience in a previous blog entry. So. Here we are. Fibromyalgia with no medication to ease symptoms. My plan is to try physical therapy and swimming. I’ll keep you posted. 

As for my migraines…. they are still chronic, daily, intractable, and have me ready to give up. But I won’t. Because if nothing else, this struggle has made me stronger than I’ve ever been before. I will continue to research, advocate, scream and yell if needed, until proper treatment or even a cure is found. I’ve turned this journey of pain and depression into my mission in life. I am a warrior! And this battle is mine to win! Carry on fellow warriors. Carry on. 

Sleep is my happy place. A place without worry or pain. An escape from reality. A place where good things happen and, usually, the bad things stay away. I do have nightmares. But thankfully I don’t often remember them. The good dreams seem to stay with me. More vivid and colorful. But what happens when you can’t sleep?! Painsomnia. So tired, and yet no sleep. No respite from my chronic daily pain. No break from my emotions. No time for my mind to stop rehashing the negative and remember the positive. I’m exhausted all the time. It’s a constant fight of mind over body or body over mind. I depend on these breaks. I need them to function. Without them, I’m lost. 

 

Shame

Stigma

Depression

Anxiety

Panic attacks

Loneliness

Guilt

Worthlessness

Fear

Doubt

Low or no self-esteem

Mourning for what used to be

Denial

Physical and mental exhaustion

Anger

(To be continued)

 

 

My life was friends, family, movies, concerts, museums, travel. Pretty much anything I wanted and could financially support. That usually wasn’t an issue. I had worked full-time since I was 17. I always had benefits, and the pay improved as the jobs did. I worked hard and learned various skills. I took college courses and tried to figure out what I wanted for a career. I jumped around from boarding kennel tech to dental assistant to bank teller to bartender to name a few. I wound up in the dental field for the largest part of my (up to now) career. I loved it and since I always found my way back to it, figured it was right for me. My most recent position was Dental Practice Manager. I was in charge of two offices and fifteen employees. It was both challenging and frustrating, and I loved every minute of it. I had my own office. I was in an authority position. I took managerial classes and kept learning. I was happy. I had travelled much of Europe, seen museums and art pieces I had dreamed of seeing in person. I had friends, went out to concerts, lunches, movies, dinners, and pretty much did whatever I chose. Life was good. Then the migraines started. And the chronic pain. And the insomnia. And the depression. And the panic attacks. And the guilt. And the feelings of worthlessness, loss of hope, loss of self. It occurred gradually, but steadily. I lost so much. My job was gone. “Friends” left. I was unable to travel. I had no income. I was fighting for disability benefits. I applied for “food stamps.” My social life became doctor appointments. My house became my safety net. The only place where I could control events and situations. Going out became a nightmare of overly bright lights, amplified noise, and bombardment of smells. I was in near constant pain and the meds to ease the pain caused horrible side effects. And now here I sit. Five years later. Still in chronic pain. Still waiting for relief. How is this my life?!

Guilt. So much guilt. Eating away at me. Crushing me body and soul. Always there. Drowning in it. Knowing my illnesses are beyond my control, but feeling guilty anyway. I didn’t ask for this life of pain. I wouldn’t wish it on my worst enemy. I don’t deserve it. I don’t want it. But I’m stuck with it. Yet I’m always apologizing. For not being able to do simple things. Missing appointments, cancelling plans, avoiding making plans. Not being able to work. Not being a productive member of society. Unable to contribute. Worthless, lonely, and so, so guilty.

So. My closest, best, most caring, loving, empathetic, sympathetic, generous, gracious, compassionate, giving, sweet friends/family live in my computer. I have a deep, fierce, passionate love for all of them. When I cannot get outside and handle “real life,” they are here for me. I can always reach out and find an instant support system right at my fingertips. They know my pain and still stay with me. They don’t judge, they listen and respond. They don’t disappear when life throws me more shit than I think I can possibly handle. They say “stay strong!” They send hugs and positive thoughts to me constantly. They’ve seen me at my worst and push me to be my best. They don’t deny, place blame, disapprove, doubt, or hurt me. They know more about me than some of my blood relatives and still love me. They tell me “family don’t end with blood!” They know my secrets, my aspirations, my goals, my hopes, my dreams. They don’t mock, discourage, or discount me for any of them. When I am down, they pick me up. When I say I can’t go on, they say “you are not alone!” When I’m crying from pain, depressed and anxious, they make me smile again. When my depression is so bad that I can’t stop crying, they say “you matter!” They amaze me, inspire me, and make me feel loved and important every day. They are my rocks, my sounding boards, my therapists, my conscious, my angels and devils. They entrust me with their stories and experiences as I share mine with them. If I disappear, however briefly, they find me. They won’t let me get lost. My friends are the epitome of what family and friendship is and should be. I love them all. And I’ve never met any of them. “Lay your weary head to rest, don’t you cry no more!” Carry on and #AlwaysKeepFighting #SPNFamily 💕