Revelations 

So. Long time, no update. Several things have changed recently. 

I found a new psychiatrist. I wanted to see if my meds were working well enough or if it was time for a change. He tested me for thyroid condition after stating that 4 out of 10 new patients were found to have an undiagnosed medical condition. 

Turns out that I have hypothyroidism. I had been tested previously as the symptoms were so similar to fibromyalgia, but my tests had been negative. Or so I thought. 

After starting on thyroid meds, I looked over my prior bloodwork results. Multiple times over the past few years, my numbers had been off. Three different doctors had neglected to inform me that my thyroid was under active at the time of the testing. 

I had researched hypothyroidism as a possible candidate for my many symptoms over the last five or so years. So many matched. Weight gain, fatigue, migraine, thinning hair, dry skin, insomnia, mood disorders, muscle and joint pain, feeling cold and/or hot, numbness in hands and feet, etc. I had suffered from all of these and more. 

It may sound crazy to say that I was “ecstatic” to find out that I had a thyroid condition, but for anyone suffering with an invisible illness, you understand. I had a name, a diagnosis, a treatment plan, and hope. For the first time in a very long time, I had hope. If my thyroid meds helped to ease even one symptom, I would be thrilled. 

Fingers crossed for much better days ahead! 

Not MY Life Anymore

So. It’s Friday. End of another week. It’s been a rough one. Five long pain-filled days. Five days of getting up every morning and failing to do what I set out to do. Five days of tears, anger, frustration, depression, and anxiety. Five days of not being in control of my own body and life. Five fucking days of hell. With no end in sight. This is my personal demon. This is migraine. 

Him

She lies huddled on the bed in the dark. Curled up in a defensive ball. Hands covering her ears. Eyes squeezed tightly shut. Shivering, trembling, terrified. Cheeks wet from silently shed tears. Alone. So alone. 

He waits outside the open bedroom door, leaning on the frame. The door has a lock, but she learned long ago that using it was pointless. He got in every time. He watches. Intent. Sensing her fear. Feeding from it. Becoming more powerful for it. Her hopelessness washes over him in waves. He smiles. 

She fought him for years. Fought with her very being. For control. Using her extensive, expensive arsenal of weapons. He defeated each one as if it were nothing. The guns jammed. The knives missed their mark. The arrows couldn’t pierce him. Still she tried. She was strong. He was stronger. 

The screaming was the part he enjoyed the most. She raged and threatened as long as she had breath left in her lungs. Then came the pleading, begging, bargaining. She only did it when she was close to giving up. It was all she had left. But he laughed at her. 

She remembered her life before he took charge. Before she became his prisoner. When she was her own person. She had a life, family, friends. One by one he took them all. Leaving her empty, exhausted, unable to fight back. 

But she tried. He admired her spirit and will. But he enjoyed breaking her even more. That was his job. And he excelled at his job. 

Maybe someday someone stronger than him would come along. To save her. To help her beat him. To chase him away. To soothe her broken body and mind. To let her live again. At peace. Maybe even smile again. But not today. 

Today chronic migraine wins again. He is her captor. She, his unwilling victim. 


Staying Positive? 

So. How do I stay positive when I am living with a chronic illness? Good question. And I wish there was an easy answer, but, like most situations dealing with chronic pain, there isn’t one. 

I deal. As best as I can. Every day brings a new beginning. A chance at a day better than the bad ones that came before. A possibly light pain day. Maybe somewhat productive. Hopefully I will be able to get through the “easy” parts without too much stress. Without tears. Without frustration and guilt and doubt. Without my demons mocking my every move. 

I start slowly. I sit up in bed at 4 am, per usual. Woken by either pain or insomnia or nightmares. I stay sitting for a few minutes. Cataloging each and every body part for pain, stiffness, numbness, or weakness. I put my feet on the floor and reevaluate. This small movement sometimes changes everything. I stand. Once again checking in with my body for help deciding my next move. 

Can I shower? Yes, if I’m careful. Can I wash my face and brush my teeth? Maybe. If I take it slow. Yes! Both chores done. Now I sit for a minute. I’m exhausted already. My head is starting its typical drumbeat. I consider my next move. Will I be able to go out? That involves getting dressed, putting on makeup, fixing my hair so it doesn’t look like I haven’t washed it in three or more days due to pain from the water on my head (i.e. allodynia.) My brain hurts. It’s too much. I sit back down on my bed. I haven’t even had my coffee yet and I’m ready to go back to sleep for the day. 

I push on. I take my morning meds. I’m currently at 9 pills. I need my coffee. I settle for clean underwear, sweats, and a t-shirt for now. I make it to the kitchen. Coffee is ready. I pour myself a cup and almost drop the milk as a pain from out of nowhere shoots through my elbow. Huh. That’s new. I grab the ice pack and head for the living room. (BTW, it’s 100 or so foot area I’m in, one floor, not a mansion wing!) 

I settle in my chair with the ice and reach for my heating pad for my neck. Pillows situated, I lean back and take a deep breath. I take my first sip of coffee and close my eyes for a minute. It’s now 4:30. Nothing has to be decided for a few hours yet. In that time, things may drastically change. 

My head pain may rocket from a 6 to a 9. The nausea and light and noise sensitivity may propel me to the bathroom for a time or even back into bed. My back might start spasming, which requires another pill. The side effects of the pills may cause a myriad of symptoms. I may be too unsteady, lightheaded, or nauseous to drive, in which case I have to skip going out. ParaTransit requires a day’s notice. (I never know how I’ll be until each day starts.) If I have an appointment, I may incur a charge for late cancelation. Money that I don’t have. 

Or I may be okay to drive. Even run a few errands. My back might cooperate and my symptoms may be mild to moderate, but not severe enough to stay home. Alternatively, symptoms may flare while I’m out, leaving me in the precarious situation of driving home after taking pain meds or waiting until I get home and the pain is beyond pills and I need to give myself a shot or go to the ER. It’s a coin toss. Every. Single. Day. 

So. How do I stay positive? Could you? It’s a daily struggle. Me against my demons. (Demons being my own body and mind conspiring to keep me from living the life I want to live.) Some days are better than others. Each morning I attempt to put the previous day behind me and begin anew. It’s not easy. But my will is strong. And as long as I push myself past my limits, I consider it a victory. 

My World

So. I’m exhausted and in pain. Beyond exhausted. Just ran a marathon exhausted. Swam ten laps in the pool exhausted. Body like lead. Can’t lift my head up, bone-deep exhausted. Pain like I was hit by a bus. Muscles screaming. Joints throbbing. Nerves on fire. Back spasms. Head feels like a vice around my forehead. Like an ice pick through my eye. Throbbing, stabbing pain. Descriptive much?

Am I in the hospital? ICU? ER? Urgent care? Doctor’s office?                

Nope. 

I’m at home. In bed. Trying to survive. Just a typical day in the life of a chronic pain sufferer. 

2017

So. It’s the first day of the new year. Page one of a new book. A fresh start. Time for resolutions and new goals. I wanted a different story for 2017. A better story. A most definitely less pain-filled story. A happier, positive, fun story. 

The main character would throw off the burden of chronic pain and depression and begin to sing and dance just like in a big Broadway musical. Backup dancers would join in,the orchestra would break into what would become a top ten hit, and the entire thing would be in glorious technicolor! Our hero had overcome extreme circumstances and come out on the other side with no scars! 

But, unfortunately, this is real life. Not a fantasy. Not a dream to wake up from as an entirely different version of myself. I am who I am. I am disabled. I am depressed. I am in near constant pain. I don’t sleep, so dreams don’t give me much chance to escape. Which hurts. I’d like to escape, even temporarily, to give myself a break. An escape from the constant worry, the what ifs, the guilt, and the pain. Physical and emotional. 

I do my best to get up every morning with a positive mindset. Today, I think. Today I will be productive. I’ll get things done. I will go out and run errands. I’ll try a new restaurant. I’ll catch that new movie everyone’s talking about. I’ll join a gym. I’ll plan a trip. 

Some days I’m successful. Those are the good days. The days I concentrate on and remember when the bad days hit. The days when I can’t get out of bed. When I’ve been up all night, 10+ pain level, back spasms, crying from the heavy weight on my heart. The worst days. The days I want most to forget, but the ones that stand out the strongest. 

I try to look forward, not back. I’m better at that than I used to be. But as the months turn into years, and the episodic turn to chronic, it’s more difficult. Difficult to find reasons to get up. Difficult to not just say “Screw it! I’m done!” 

But I won’t give up. See, I know me. Better than anyone. And if nothing else, these illnesses have made me stronger than I ever thought possible. I won’t back down! I will continue to search for treatment, relief, and eventually, a cure. I’ve made this my mission in life. For me and others like me. I will continue to look my demons straight in the eye and say “Bring it on! I got this!” 

So. Happy 2017! Let’s make this the year we find successful treatment for our illnesses! 

Carry on my fellow warriors! Carry on and always keep fighting! 💜 

Lost Friends

So. Prior to my chronic medical issues, I had friends. Work friends. Casual friends. One who I loved like a sister. Some I saw daily, some on rare occasions, some came in and out of my life through the years. 

Once my waning health made it impossible to keep working, my friends changed. Or I changed. Or now that I can look back at that time more rationally, less emotionally, we all changed. Some stayed, some left. Some I neglected, some neglected me. Some I tried desperately to hold on to, others, I let drift away. Not returning calls, invitations, texts, basically avoiding any and all contact. Some avoided me. Probably tired of my constant excuses, cancellations, complaining. 

Looking back, no one is to blame. My life changed when my health did. There were things I was no longer able to do, places I couldn’t go, times I couldn’t get out of bed or answer the phone. Some friends tried harder than others. Told me it was okay, they understood, empathized, and missed me. 

Others, my “sister,” simply disappeared and refused contact. She broke my heart and destroyed my trust. We had shared everything. Saw each other almost daily, traveled, spent all of our free time together. We spoke on the phone or texted long conversations about any and everything. Dreams, hopes, fears, history, plans for the future.

 But then I got sick. And I don’t think she could handle it. I’ll never know her reasons for sure, but for a long time I blamed myself. I wasn’t there for her when she needed me. I couldn’t help her with things like I used to do. I felt horrible. And guilty. Like I abandoned HER! 

Now, after deep introspection (and intense therapy), I know I was not to blame. My illness was beyond my control. I pushed myself hard through incredible pain to keep our friendship alive. Was she aware of this? I don’t know. She had accompanied me to many doctor appointments and knew the extent of my chronic pain issues. I backed out of plans and had to cancel events, but she had to know how hard I tried not to. 

I understand that some people are so uncomfortable around sickness and disease that they honestly can’t deal. I get that! I do! But it still hurts! And what hurts the most is that I’ll never be sure what really happened. I know I have to move past it, stop blaming myself, stop feeling guilty or at fault. 

This is not the life I planned to live, it just happened. I’m still praying for a treatment that works or even a cure. I still plan to return to the working world when able. But I’ll always be careful with my feelings and giving my heart to new people. I hate that I will always be leery and hesitant to make new friends. I hate her for doing that to me! But I still miss her. 

Better days ahead fellow chronic pain warriors! My hope for you is friends and family that are loving, caring, empathetic, and love you too much to give up on you! 💜