Throughout my life, writing down my feelings has helped me to cope with them. For some reason, I’ve never written about my health. Sure, I’ve posted a few status messages on Facebook about having a bad pain day. Tonight, I actually opened up a little and ranted. I tried to put into words what my life has been reduced to. I was angry at the time, so my words were a jumbled mess. The desire to explain, though, haunted me all night. Even now – at 3am, exhausted and in a fog of pain – I cannot sleep because the words want to pour from my heart and mind. I HAVE to write about this or it will drive me crazy.
Just in case someone reads this who doesn’t know my history, let’s go back in time just a little. To those of you whom I hold dear, please bear with me through this part. Perhaps you’ll even learn details you never knew… details of my journey to this point.
In June of 1992, I was in a serious car accident. I was driving a tiny little Ford EXP that had no backseat even. I was on a small service road mainly used by semi trucks and it had been raining. The road was curvy and I wasn’t going very fast. I’ve always been an overly cautious driver. When I started to round one of the curves, I screamed. A semi was coming toward me way too fast and on my side of the road. Instead of slowing down to take the curves the right way he was barreling through them on the wrong side. Instead of doing the things drummed into our heads as we learned to drive, I panicked completely and jerked the wheel. It’s actually a damn good thing I did. Being in that tiny car and not wearing a seatbelt, I likely would have died (or been much more seriously injured) had he hit me head on. Instead, the tiny car hit the high curb at the side of the road and bounced back. The big rig clipped the car at the drivers’ side door. The impact wasn’t as bad as I had expected, but I was thrown forward hard enough to still be able to hear the sound of my head hitting the wheel to this day. It’s a wonder I didn’t have a head injury. I was lucky to only suffer minor bruising in my lower back and some whiplash in my neck – or so I thought.
The doctors at the time told me it would hurt off and on for up to a few months and that I should rest and blah blah blah. They were the doctors, so I took them at their word. Months later the pain was still unbearable. Long story short, I ended up at several doctors over the next two years. None of them could help me. None of their stupid pills did anything. They tried to suggest they shove a steel rod up my spine. Uh… no. I refused. Finally, I ended up seeing a Chiropractor out of desperation about three years after the wreck. That’s when I learned that I had already developed Degenerative Disc Disease in my back and neck.
I’ve struggled with that for many years, slowly putting on more weight year after year. As the degeneration and pain get worse, I can do even less. As I do even less, I gain more weight. As I gain more weight, it hurts in my back even more. This circle has been tormenting me for years and caused a lot of stress on my body and my overall health. That’s when the other issues began – and I chalked them all up to being fat.
Some of the symptoms were so different from each other that I never knew they were related. Let’s be blunt here: who in their right mind would think to tell their doctor that they’re having trouble with constant diarrhea and pain when someone touches your shoulder? We are given very short windows of time with our physicians. We pick and choose the worst things to discuss so that we can get answers and relief. I had never thought to list every symptom I dealt with regularly all at once. Maybe that’s why no doctor ever thought to look at Fibromyalgia.
I finally got my diagnosis. For several years, I begged God, my family and various doctors to figure out what was wrong with me and fix it. The pain I deal with is impossible to describe. Well-meaning friends and family will say things such as “oh, I have a bad back – I know how you feel.” No… no you don’t. You can’t, and I’m glad you can’t. But you just… can’t.
If it were only the pain, I might be handling this better. The disease has progressed a LOT in the past year. On any given day, I deal with severe muscle twitches for hours on end in different body muscles. Some days, it might be my eyebrow. Sometimes it’s a leg muscle, an area on my arm or even my finger. The tightness and pain in my back, neck and shoulders NEVER goes away completely. I only wish I were kidding. It’s ALWAYS there. Some days, it’s just a niggling pain. Days like today are a painkiller-mixed-with-muscle-relaxer-day. I hate those days and I hate those stupid pills. I will have constant diarrhea. I will have severe mood swings, snapping at even the tiniest thing my kids, grandkids or fiance do and say. I can sink into such a deep depression without warning that I struggle just to want to get out of bed and stop crying. My fingers are sore and stiff, making it so hard to type. Considering I get paid to type a lot of words every day, this is something that bothers me greatly. What’s going to happen to David and I when the day comes that I can no longer work? I’ve worked so hard for so many years to build this career and get to this place financially. I’m terrified of what will happen when it’s ripped away from me.
There are other, smaller symptoms and problems. The one that bothers me the most, though, is the Fibro Fog. My brain just – won’t work. It’s nearly impossible to concentrate. I will forget something that was told to me only moments before. My long-term memory is fine. I have almost zero short-term memory now and have to make constant notes to remember things. I struggle to say things properly, spell words correctly or even remember how in the hell to do the work I love so much. I CAN do it, and somehow I DO do it… but I honestly don’t know how sometimes. Is it by rote? Is it sheer determination? Luck? I don’t know – and I’m scared to find out.
I hate that my life has been reduced to this. I am humiliated when I go to a mall and get pushed around in a wheelchair. I’m humiliated by the dirty looks I get when I ride around WalMart in one of those electric carts… I’ve actually had a person make rude comments to me about “her only disability is being fat.” I smiled sweetly at that and informed the lady that I wasn’t disabled because I am fat – I am fat because I am disabled. Then I zipped away on the cart with tears in my eyes.
I hate feeling like a failure. My body is broken and my spirit isn’t far behind. I push myself beyond my physical limits every day simply because I refuse to give up. I research daily, looking for answers – treatments – ways to make this stupid disease be less than it is. I play word games and do puzzles to help keep my brain focusing. I feel broken. I’m a failure. Helpless. Pathetic.
But it all spirals out from under me when something new happens… such as earlier tonight.
I went grocery shopping today. I cleaned a little in the apartment. I worked at my desk for several hours. And, well – I folded and put away three baskets of clothes that Beka had washed. It was far too much and I paid for it dearly. I laid on my bed crying from the tightness and pain… silently begging the multiple muscle spasms to just stop. I had to go to the restroom and asked David to help me up. I’ve had trouble standing up at times for years, and I’m used to that. However, when I went to sit up my body informed me that wasn’t happening. My back and shoulders were locked up so badly that it was like they were completely frozen… they wouldn’t work. I couldn’t sit up by myself for the first time. The tears came and David gently put his arm around my back and sat me up. I sobbed, telling him how utterly humiliated I was. At that moment, I felt as though my life was over – SHOULD be over. He held me and soothed me as always, telling me I am not broken, that he loves me and that it wasn’t a big deal.
It IS a big deal. He cannot possibly understand, and that’s okay. I wouldn’t want him to. I don’t wish this suffering all day every day on any of you. Yes, your back may hurt. You may even have a bulging disc or two like I do. You might suffer from IBS like members of my family. But you cannot understand the constant debilitating pain that I deal with. I’m tired of locking that pain inside. I’m going to write about it – often. I’m going to rant and scream and cry – and stop holding it in. Doing so is killing me even more than the physical symptoms.
I’m going to cope with Fibromyalgia by acknowledging that I have it – by talking about it – by educating others and by taking control of my sanity. It’s all I can do at this point. I want others to somehow be able to comprehend – even though they don’t get it fully – what I’m going through. By sharing with all of my family and friends, I know that you’ll have a light go on in your head. YOu’ll either feel pity and slowly turn away or you’ll step up and support me emotionally… support I’m learning I desperately need.
Fibrmyalgia isn’t life-threatening in and of itself. The problems that can arise because of it definitely are. The health issues brought on by inactivity due to Fibro are. The crushing depression that is caused by life with Fibro is. In order for me to live to a very old age with David, I NEED the support of others. I need love, understanding and even help managing daily. I have to stop pushing myself so hard physically and mentally. I need to ASK FOR HELP.
Doing these things will help me to cope. They have to. I can’t keep living in so much pain, depression, fear and anger alone anymore.
I need help.