I've devised a new pain scale for myself. From 0-10: 0 means no pain (not surprising), 5 means pain is present but is tolerable, (again, not surprising). here is where I change it up: 8 means pain is really intense and I'm not getting any relief from any of my meds, tears are starting to come to my eyes and I'm continually asking myself, why must there be so much pain? why? why? why? I'm pacing myself because the pain can only get worse and the next steps are drastic steps. 9 means I would consider going to a hospital. I'm generally reluctant about this because the first thing doctors unfamiliar with me or a patient like me think is "drug seeker", then they're stumped because I'm allergic to everything and go into a "we don't know what we can do to help you" mode. The hospital generally ends up being a loooooong waste of time for a few short hours of relief, if any relief at all. 10 means I would think about taking my life because its just too much to bear; I haven't gotten there yet, thank God! Right now I would say I'm at an 8. Nothing is helping and the nearest doctor visit is Tuesday; this will be a long weekend for me and I will medicate as necessary to make it to Tuesday. Desperation is starting to set in. At this point, and under these circumstances, I would have to reconsider not wanting to taking prednisone ever again.
I can't read a book or my kindle because I can't hold it up, my arm is too weak and the circulation drops so I get pins and needles. I can't watch TV because my neck can't hold my head up, or at least that's how it feels and with cervical instability from EDS its physically true. Only laying back and staring at the ceiling provides any relief, but how boring is that? I can lay on my sides, any side, for only short periods of time because of the pain and burning in my neck, arm, shoulder and back.
Remember those truly dark days I mentioned in a previous post? This is one of those dark days or week.
In the midst of this, "I" has sunk into a deep depression and enters quasi-catatonic states. He worries me and his therapist and psychiatrist are very worried about him. Even his brother is worried about him and knows he's not being himself because they're not fighting anymore! If by Monday he has not responded to the new med we may have to consider hospitalization. This breaks my heart. For love of my teenage "baby", I lay aside all of my pain in an attempt to rouse him from these states and engage him in activities, conversations and games. I'll have him make choices from what's for dinner, to what TV show to watch, any little thing that will require physical and mental exertion. Despite how painful driving is to me, I will drag him to MH therapy, physical therapy, psychiatrist appointments, and baseball practice, whether he wants to go or not.
However, after all of that, I will collapse at the end of the day and pay for it dearly in mounds and waves of pain that only overmedicating with appease. To make things a little easier on myself, I'm going to have J get his permanent driver's license, hopefully by the end of next week. I this will help lighten the load for me significantly.
As always, in faith, seeking peace....and listening
No comments:
Post a Comment