This is not so much a blog post as it is a vent session. Today I hurt so much even my hair hurts. I am jealous of every disease free person on the planet. I am unable to bend enough even to take my clothes out of the dryer, I am unable to fix myself breakfast, and yes, it hurts a lot to type, but this is all I’ve got.
This is not going to be technical at all, this website has shared many pain articles, and I am sure there will be many more in the future, as, unfortunately, for many of us, chronic pain is a way of life. I am not looking for pity, well not a lot lol, I am just trying to share with people who don’t know how awful it is, and for those who do know, to let you know you are not alone. Also, sometimes writing about a thing helps to ease the pain from it somewhat, like a form of therapy.
You know how it feels when you first come down with flu, and you feel like you hurt so bad even your hair hurts? Imagine feeling like that every day, and some days so much worse. Today it hurts to sit, stand, lay, my hands and feet keep going numb, and every time I move tears come out, I am not crying, they just squeeze out from pain.
It was almost a year ago that my life changed forever, December 16, 2011, I was driving my daughter to the movies when my hands went numb, my face went numb, I felt like someone had split open my head with an ax because of the mind numbing pain. I couldn’t pull over and have my daughter drive as she is visually disabled. I was trying so hard not to scare her while I was freaking out and wondering if I was dying, or having a stroke, or what. We went to my sister’s, and I am told when I got out of the car I acted like I was drunk, stumbling as I walked and slurring my words, I crawled into my sister’s bed and took a nap.
When I woke up I still had the splitting headache, but felt okay otherwise, we went to the movie, then we both had a headache. I slept most of the weekend and Monday drove the half mile to work, very unusual but I didn’t feel well, by 10:30 a.m. I was shaking and incoherent, I took an early lunch hoping to feel better, afterwards my supervisor took one look at me and sent me home thinking I had a bad virus. By the next day I knew I needed to see a doctor, but I was too dizzy and weak to walk, my son took me in a wheelchair. That was the start of the scariest month of my life, fortunately I was too sick to remember most of it. Being a nurse I did my own research and went to the series of doctors armed with a list of my symptoms as my memory is so bad now, and with a working knowledge of what disease process it could be.
When the doctors decided I had an autoimmune disease I knew it had to be Fibromyalgia or Lupus, they are the only ones with sudden onset of symptoms that I was able to find. My symptoms came on like a stroke and I was very ill for months, with medication I am stable somewhat, but I have bad days, really bad days, and days like today.
I honestly think this is the most stupid disease ever, you can’t make plans, people don’t understand it, and quite often even close friends and family think you are faking it for attention. I try, some days more than others, to remain positive and upbeat, but there are times I just do not have the energy or inclination to try, I am miserable, I can’t help it, I want to just… complain for a minute. I know there are worse things, but honestly, I cannot imagine much that is worse than how I feel today. Thanks for listening, hugs (gently!)