this post is difficult for me to write. not at because it’s an emotional topic, but because it is so hard for me to put into words for someone without these conditions to understand. it’s a simple topic to many, but so complex to me… pain.
this week has been an especially emotional week for many reasons. it’s simplest to say that stress kicks all of my ailments into overdrive, causing me to go into bitch overdrive. I told my mom this week that one day, if even one person was within an 8 foot radius of me, if they breathed it would bother me. when I’m in pain, it’s sensory overload.. for everything.
for the first time in months, i woke up and i was unable to move. i don’t mean a “sore from the day before, getting old kind of aches“, i mean a paralyzing the first few time i woke up and this happened to be, i was terrified, seconds away from calling 911 because i thought i had had a stroke. now that i know its happened a few times, i know what’s “normal” when these spells happen. it’s paralyzing, really – im able to move my head, but it feels as though my limbs and torso have been laid in cement. finally when im able to move, i have to do so muscle by muscle, eventually able to move an arm or a leg and can then use that leg to help position the other, eventually sitting up. when this happens, it can take hours to get up and moving around. each time it’s a little bit different and I’m still a little scared, but know that it eventually ends. thankfully, this happened on a weekend, so i was able to sleep about 40/48 hours. ive had one doctor diagnosis my pain condition as Small Fiber Neuropathy, another as Fibromyalgia.
to say the past week has been discouraging would be an understatement of the year. im not sure what’s scarier, not knowing what exactly is the cause of these spells or the fact I think know exactly what causes them: Humira. the one thing that has given me at least some hope that we are closer than ever before to a cure. i will save this lengthy post for another day, when i have the energy.
im hoping this week brings me a change, since being unable to train at all for two whole weeks due to feeling awful and some pretty kick you in the stomach type of pain. I deal with these set backs like clockwork, but can tell you it never gets easier, because each flare and episode is quite different than the previous. today i noticed significant blood loss for the first time in quite awhile. also hoping this week my steroids kick in. one thing a life in disease has shown me is there are times one has no choice but to wait for the storm to pass and try to take cover under anything you can. lucky for me, i had fresh sheets on the bed, so i took cover under those..