After almost two weeks of suffering from my muscles attacking my spine and neck, last night I felt like I was finally on the upswing. I could feel my muscles relaxing and my joints popped whenever I moved my body. I sounded like a bowl of rice krispies. With less pressure on my neck, my brain pain decreased and I could think clearly. I went to bed with hopes of a productive tomorrow. I had good reasons for feeling hopeful, as I was able to leave the house a few times over the past two weeks.
Well tomorrow is here and all hopes of doing anything other than writing this post are gone. I awoke with a level of pain that was off the charts. Even my hair hurts!!! I have been awake for almost 6 hours. I have only left my bed 3 times. Once to pour myself a cup of coffee and twice to go to the bathroom. All 3 excursions were excruciating. My bones feel like they are shattering with every step or movement. Tears stream down my face as I type this. My tears have nothing to do with sadness, instead they indicate a pain level that is too high for me. With every movement another tear rolls down my cheek and there is nothing I can do to stop it. My muscles feel like worn out rubber bands ready to snap apart at any moment. My balance is off, with each trip down the hall, I find myself bouncing from wall to wall, trying to stay upright. My ribcage is so sore that it hurts to breath. My skin is flushed and feels like it is on fire. However, I took my temperature and I don’t have a fever, this indicates that it is one of my chronic conditions and not whatever the latest flu bug is. This frustrates me to no end. Never knowing what one day to the next is going to be like. Everything I had planned today will just have to be pushed farther in to the future.
Although I hate medicating for pain so early in the day, not medicating wasn’t an option this morning. Thankfully, my medical marijuana has eliminated my urge to vomit and reduced my pain enough to get though this post. Once I am done, I will take a heavier dose and call it a day.
Why am I writing this post? Because this is what people don’t see. When people see me out of the house, they don’t realize that that outing was most likely the only one or one of the few outings I made out of the house in the past week or two. They may even notice that I seem a little off, but they never see me at my worst. There is a reason for this. Many, many years ago when I still believed that I could fight my conditions by pushing myself physically, I went to church on a day when I shouldn’t have. I felt pretty much like I do today. Unable to sit up without neck support, I decided to sit in a rocking chair in the cry room. The cry room was actually fitting since pain was causing tears to roll down my face. A friend came into the cry room to say hi and was shocked by what she saw. Minus the areas of my face that were bright red, I was pasty white. The temperature of my skin was so hot that she swore I was running a dangerously high fever. Nerve pain was causing numbness throughout my limbs. As I struggled to get the words from my brain to pass through my lips, my friend told my husband to rush me to the ER or she was calling an ambulance. Long story short, I was admitted because the ER believed I had a stroke. Well they were wrong. I was stuck in the hospital for 3 days while they ran test after test. On the 4th morning I was told that they had no idea what had happened and I was free to go home. What????!!!! This is why I rarely let people see me at my worst. Since then I have become really good at being able to decipher when I should or shouldn’t go to the ER. I can’t afford to let other’s concern when seeing me at my worst guilt me into wasting mine and the hospital’s time and money. While their intentions are sincere and thoughtful, what they don’t realize is what they saw was my normal. Because of the decrease in frequency, some might say that it is no longer normal. But it is. Just because it happens less than before, there is nothing different about it.
When seen in public, instead of telling me that I don’t look sick, people should be thanking me for not coming out when how I look actually reflects how I feel.
I hope that your day is better than mine!
If not, may our tomorrow be better!
3 thoughts on “What they don’t see”
So so familiar, all of it. After 20 years of Fibro, now diagnosed with Lyme. The good days are not an indication of this cross we bear. People think its’ a complement to say how great we look the one day we can leave the house and I weep inside. I guess I should be flattered, a normal looking face is all I have left not destroyed and racked with visible signs of destruction. It is surely no indicator of what lyes within, every cell, fiber, muscle, organ and blood that I visualize as black and destroyed. In spite of it all, I feel so lucky to see another sunrise, that my loved ones have not had to grieve me, that I do not take up residence in a cold damp soil 6 feet below. I am grateful for love and for a warm bed. All the things I took for granted are so precious and with each day comes hope.
Oh sweetie… Am so sorry you are having a bad flare day… Lots of gentle air hugs from Ohio… Love you girl.. <3
Thank you! Feeling an itsy bit better today.