Spoons and Semicolons

Tears of relief and joy trickled down my cheeks in the hospital bed. My mom staring at me, tears threatening to fall down her own cheek. Dad had left the room to grab a nurse and get me something to drink. It was the scariest procedure I have been through and it surprisingly made everything better. For a day.

There is very little that I wouldn't do just to go back to that hospital bed and the way I felt in those moments. It was my first time not experiencing pain. Yes, you read that right. Every day since I can remember, I have always been in some sort of pain. I couldn't picture life without it and could never wrap my head around the fact that the people I see around me most likely don't feel anything- they're not currently in pain. To be honest, I still look with jealousy at my coworkers, family, friends, and strangers realizing that they are going through their day-to-day life with no pain. Sure, they know what it's like to be in pain: a scrape, a cut, maybe a broken bone or two. Heck, labour is a painful thing. But they aren't in pain every waking moment.

I was always a sensitive child. There were foods I couldn't eat because of the texture and there were items of clothing I hated wearing because the texture caused me pain (my mom would always have to cut off tags on my clothes and to this day I still refuse to wear socks when possible). It felt like every bruise or sprain was actually broken bone and my very annoyed parents would call me a wimp. That's just what I thought I was. But there was always something physically wrong with me. I went through a long stage at six years old where I would constantly throw up- my parents would have rubber mats and buckets easily accessible for me because of it. Turns out, I was getting sick because I could feel my body digesting food. It's a bizarre feeling I still get from time to time.

When I was older I got severely depressed because of the constant pain I was in. I have headaches that never go away, they're constantly throbbing and aches always distracting me from my daily tasks. No medication ever helped and it didn't matter if I kept noises to a minimum or if I kept the lights in my room dim. They were just always there. On top of that, all the random body pains. No one really thought I was in pain and doctors were saying nothing was wrong. I even went through a several year period where I would go blind randomly throughout the day. Thankfully I haven't had an episode like that in a long time. Finally, there was a doctor to listen and believe me. He thought I had a buildup of too much spinal fluid and that was causing all of my problems. He tested his theory with a spinal tap. That was the scariest procedure of my life. They have you lie real still on your side, numb your back and then stick this thick, long needle into your back to drain some spinal fluid and measure the pressure. Immediately I felt relief. I instantly burst into tears when my bed was wheeled back into the hospital room. My sweet mom was so concerned- she knew I was scared and thought I was in more pain. When I told her I didn't feel any pain and that I had never experienced that before, I could see tears glistening in her eyes.

The doctor said my levels were normal and I didn't have the medical condition he thought I had, that feeling relief was a common side effect of the procedure even if your pressure was normal. But, he wanted to give me a low dose of medication usually used to treat the condition because he thought it might help. Spoiler: he lied. It made me feel worse and he gave me the highest dose possible. I then went through seeing doctors who gave me way too much medication and didn't know what to do with me. All the meds made me severally ill. I had no energy, I was like the walking dead. Finally, one doctor actually looked at my medical history and took me of all the medication and I went through the worst withdrawal period. I couldn't take over the counter meds to relieve the pain and now if I were to take over the counter pills, they would have no effect on me.

Somehow I learned about fibromyalgia and found a local doctor that specialized in it. He told me more about it, and while there's no official way to diagnose fibro, he did the standard “pressure point” test and I myself was surprised at how many places his light touch hurt me. The test is essentially made up of 18 points (or 9 pairs of points) on your body that are known to cause pain when lightly pressed for people who suffer from fibromyalgia. If you have at least 11 points than it is believed you have fibro. I had more than 11. So I had a diagnosis and suddenly all the pain I had been feeling and would continue to feel had been validated. Unfortunately, there is no cure and only three medications approved to help fibromyalgia. I have tried all three. One didn't help and the others made me extremely sick. So I still have no relief.

Why am I sharing this? My hope is that there can be understanding and sympathy for people who silently suffer from chronic or mental illness. Mental illness? But I didn't bring up mental illness? Well, I actually plan to make “Spoons and Semicolons” a series talking about fibromyalgia and depression from my perspective and experiences. It'll be therapeutic for me but the grand hope is that it'll help other people understand chronic and mental illness.