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 💕

So. Sitting here, unable to sleep as usual, at 4 am on a Sunday. I’ve been following the horrific breaking news out of Orlando since 2:00. As the tears fall for the innocent victims and their families and friends, I can’t help but be grateful for what I have. Despite my multiple chronic illnesses, I am alive. I have my Mom (my biggest supporter and my rock), my emotional support furbaby Samantha (my 4-legged therapist), my few, but loyal friends (forever positive and always understanding), and my incredibly empathetic and caring online support system (without whose friendship I couldn’t even begin to get through this chapter of my life). I finally have some financial support from Disability benefits and can basically support myself while being unable to work. I have caring, empathetic doctors (finally! side note: fellow chronic pain warriors, don’t give up the search! They are difficult to find, but they DO exist!) to help me navigate the world of chronic pain and depression and hopefully together we will find effective treatment, if not a cure. I have medical insurance to help with cost of treatments, visits, and prescriptions. I have so much more than many others and am hugely grateful for all of it! I am able to walk, talk, see, hear, speak, think, and dream. Many aren’t. As my ever wise Mom has always said, “If everyone were to put their problems in a basket, they’d pull their own back out.” Stay strong fellow warriors! Fight for what you believe in! Be the change that you want to see in the world! My thoughts are with the victims, friends, and families of the horror in Orlando. #LoveIsLove #AlwaysKeepFighting 💕

So. I started a new preventive medication on Monday night. It’s supposed to help with migraine and insomnia. And love and behold, I slept a full eight hours Monday night! First time in months that I’ve gotten more than 3 or 4 hours of sleep in a row. To say I was thrilled would be putting it mildly. I was dizzy the next day and a bit hungover, but all in all, manageable. I took it again on Tuesday night with extremely high hopes. Unfortunately, I only slept for 4 hours and was awakened by the worst nightmare that I’ve ever experienced. I couldn’t even think about going back to sleep. I’m not too dizzy as I’m typing this, so hopefully that was just a temporary side effect. We’ll see as the day progresses. I’m not counting this med as a fail this soon. I’ve given up too early in the past on other meds and want to give this one a fair chance. It’s an older medication and, according to my doctor, well tolerated and effective. The nightmare has me terrified as I remember it clearly (I usually don’t!) and I really don’t want a repeat performance! I’m taking the med again tonight and am trying to avoid preconceived notions about the outcome. I started with the lowest dose and have a lot of room for trial and error. I am determined to find a preventive that works for me as I refuse to live out the entirety of my life on pain meds. I’m going into this in a positive frame of mind and with the projection of success. I’ll keep you posted. Stay strong fellow warriors! Carry on and always keep fighting!