“If you’re going through hell, keep going.” – Winston Churchill

I am struggling hard with a somewhat severe flare up of my facial pain disorder. It’s not as bad as it tends to get sometimes but it’s bad. I had difficulty sleeping last night because the Throbbing pain kept me awake. My jaw locked shut and I couldn’t open my mouth wide enough to even fit my soda bottle into it.  The chronic pain disorder that I have (TMJD) sometimes causes sufferers to experience the locking of their jaw either locked shut or open.  

It’s literally physically locked and can’t be forced open/closed until it decides to on its own. There’s no known cure or definite effective treatment. Most of the best treatments seem to be home remedies such as heating pads and cold packs, facial massages, stretches, avoiding certain things like gum chewing and hard food, avoiding stress because that tends to aggravate it…

My pain disorder is the most physically painful experience of my life. I’m not constantly in severe agony like some people but I am in pain more often than not and it flares up every now and again to severe agony that is debilitating and seemingly unbearable.  

I struggled with this since I was a little girl but I had no idea what it is or that all the symptoms I experience are connected. I thought it was a sinus/ear condition complication since I used to have recurrent ear and sinus infections and my pain disorder affects those parts of the body. I was always afraid to tell my mom about my weird, confusing symptoms.

My left arm goes dead/weak, I experience sudden and temporary deafness, searing pain like a very severe tooth/ear/sinus ache all over my face, jaw, ears, around my eyes, temples, and now my neck, shoulders, head, and down my left arm. It used to only be on the left side of my body, now it’s on my right side as well.

My condition got worse and worse through the years until a couple years ago it became unbearable to me. I would scream out loud for hours through the night into the early morning until my throat was raw and sore and my mouth tasted like blood.   Sometimes I couldn’t even scream or cry, all I could do was squeeze the bars on my bed with one hand and hold my throbbing face in the other and writhe in agony.  

Physical pain frightens me when it reaches a certain point. I begin to panic. I have always been this way and I don’t know why. So when it flares up really bad, I am scared out of my mind. Every year I develop another symptom. When a doctor told me what this condition is I struggle with, it was one of the worst moments of my life. It felt like my life was shattered to pieces. That was around when my depressive disorder was really starting to get better in general. I was happy and hopeful.

Then my mysterious physical disorder flared up. It physically paralyzed me. I stayed wide awake for four days straight. With not a second of sleep. I screamed night after night til I lost my voice. I contemplated suicide.  Not because of depression, for once. I wasn’t depressed.

I thought I would die because of not sleeping day after day.

I thought about buying or stealing drugs to help me stop the pain. Someone gave me prescription pain pills illegally.   I was desperate. I took them. I took one. It wouldn’t work. I took a few more at once. They only took the edge off but I began feeling like myself again and was able to sleep.

When I thought it was a sinus/ear condition I believed that can always clear up but when the doctor told me it’s a chronic and currently incurable pain disorder that really has no professional treatment, I was absolutely devastated. It took everything I had not to crumble right there in her office.

Doctors often don’t like prescribing pain pills for pain disorders because they think people just want drugs and the chronic pain conditions can’t always be seen objectively with tests and sometimes pain pills don’t even work anyway. And I wouldn’t want to live on pain pills in general or take them frequently.

I had no idea what to do or how I would go on living. She gave me suggestions for how to ease the pain and prevent severe flare ups, like facial massages.  I never knew I can touch my face because I thought that would make it worse. Just the mere thought of touching my face horrified me. Many nights before the diagnosis, I would lay in bed and imagine a human hand stroking and massaging my face wishing desperately that someone could do that for me but never knowing it can really be done without exacerbating the pain.

I would imagine the hand in different skin colors and sometimes imagine it invisible.   When the doctor told me it’s not only ok but necessary for me to massage my face I was doubtful and terrified.   That night I kept thinking about it, trying to get the courage up. I would put my hands to my face then lose the courage to touch it. Then one moment I touched my face. Then I pressed on it and massaged it and I couldn’t believe it actually mitigated the pain. It wouldn’t take it away but made it almost bearable.  

The more I massaged it each day, the less my pain would become. Now that’s one of my greatest techniques. 

The thing that helped me cope with my physical pain disorder is my depressive disorder.   Because of years living with a depressive illness and learning ways to cope with it, I was already used to making myself better with personal development techniques and positive/optimistic thinking.  So this prepared me for the worsening and diagnosis of this physical ailment. I knew I am strong enough to handle this.

One of the many great things about struggling with a severe depressive illness for years and working hard to get better is, it can strengthen us beyond belief and prepare us for anything, if we allow it to. I always thought of my depression as a “curse” for the most part, for many years, but it’s actually one of my greatest blessings, as horrific and agonizing as it is.

It made me so much of what I am today.  

Suffering with severe pain of any kind can be excruciatingly lonely. When I’m suffering with a severe flare up of TMJD pain, I see everyone around me going on like usual not even realizing how incredibly blessed they are. So blessed. To be able to go on like nothing ever happened, having fun or not, laughing, eating, planning, talking, sleeping…

Not in severe anguish or despair. It’s like that with depression too.

But depression and physical pain can also open us to realize the simple but profound blessings all around. When I’m in too much pain, either physical or emotional, to do much of anything, I often see things in a way I overlooked before the pain flared up.

I see the moistness on cold soda bottles, the vibrancy of the colors in Nature, the texture of food…and I would do just about anything to go back. Back to where I was before.   When the pain wasn’t so bad.

The good thing is that we can strengthen or develop the habit of seeing the simple greatness surrounding us so even when we aren’t in agony, we can bask in the simple treasures of life. I often do this more now, even when I’m not in pain.  

That’s the good thing about pain. It can teach us so much. But not everyone will experience pain to that degree and depth and I hope they never will.   I want to teach “ordinary” people without pain disorders to be constantly and consciously grateful for not being in pain, for all the simple things, the beauty of life.

Many people will say they’re thankful for everything when the concept arises but I believe we should think about it more often than just occasionally. 

I don’t want tragedy to have to hit to make people awaken to the beauty and gratitude and abundance we are blessed with.

I will admit, sometimes I feel sorry for myself when I’m in too much pain. Especially at night when I’m in my bed or pacing back and forth in my bedroom while all the world around me is asleep and I’m in my own hell suffering beyond belief.   And I believe that’s ok. Ok to feel sorry for myself on seldom occasions.  But I don’t make a habit of it. Instead I make a habit of being strong and thankful and optimistic and positive whether or not I’m in pain.

My heart goes out to all who are suffering or struggling with pain of any kind, physical or emotional, whether it’s chronic or temporary.   When I’m having a severe  flare up, I hurt for myself but all I can mostly think about is the ones who have it worse and my heart breaks for them. There are people living in constant agony and not just occasional flare ups. And some people’s situations makes it harder to handle or live with. Since I myself have pain disorders I thoroughly understand what it’s like. Even if I never experienced chronic pain or severe agony I would be compassionate and understanding for people who do have it but the fact that I have it makes me understand more what it must be like for people always suffering.

Whenever I have a severe flare up, I try to make it a point to list a few things I’m thankful for. I have a choice to either sink into despair and focus on the pain all around or focus on beauty and hope. Today I choose Hope & Beauty.

Here’s my list:

1.) I’m thankful for the books and plays I’m blessed to have come across.

2.) I’m grateful for the songs I’m blessed to know.

3.) I’m thankful for personal development/self-help techniques

4.) for posting here

5.) for the people I have met on and off line

6.) for my body that functions very well

7.) for everything I have learned

8.) for the cold weather

9.) the beauty outside my window

10.) for blogs

11.) for animals

12.) for life

Pain is real. So is hope.

Much love, blessings, & strength to you all.

Xoxo Kim