I am tired of the struggle. I’m tired of talking to specialists that recommend treatments contrary to what my pain management doctor is doing. I am tired of hearing other CRPS sufferers tell me how much of their life they’ve retained with the help of injections and their 90 or 120 pills of morphine or percocet a month, while I struggle to get 60 vicodin that just barely make my life tolerable for an hour or two at a time.
I’m tired of begging for injections that don’t seem like they are ever going to happen. I’m tired of being lied to… I keep being told the Voltaren gel and Lidocaine patches should alleviate my pain as well as my skin hypersensitivity. However, science and common sense dictate that’s not how either of those two things work. They do help with the skin hypersentivity, but they don’t do dick for the pain.
I’m tired of having to take an extra clonazepam to deal with my pain management nurse practitioner. I honestly believe that days I go in and my blood pressure is high, it’s from stress, not pain. I feel like I’m developing PTSS from this ordeal.
I’m tired of being told that I have it great since I can work from home with my CRPS… yeah, that would be awesome, if I could work for more than an hour or two at a time or could lower my pain enough to focus without the pain meds. I’m trying out a new therapist soon, hopefully. I’m hoping they can help me with the mind of matter thing that I seem to be failing at.
Mostly, I’m tired of waking up and feeling like I’ve been hit by a truck and wondering if that is a good pain day or bad pain day, because according to the majority of my fellow sufferers, they don’t feel like that every day. So do I just not have good days and bad days or do I have bad days and worst days?
I’m tired of being unhappy. I’m tired of not working. I’m tired of not being able to do any of my hobbies. I’m tired of needing help with every aspect of my life. Someone forgot to pass me the memo that I would not qualify for disability because book sales exist, even when they are crappy and that it would hinder even partial disability. They also forgot to mention that most days, when I wake up, I’ll wish I hadn’t.
I don’t want all my life back, just a portion of it. I want to be able to work. I want to be able to cook dinner, because I love to cook. I want to be able to fold a box together. I want to be able to make a batch of soap or bath oil without feeling like the Spanish Inquisition got ahold of me. – and much like the Python Sketch, nobody expects the Spanish Inquisition. How do you plan for that? Is that a good day or a bad day?
I’m not ignoring you dear readers, I just became overwhelmed on Friday. It was awesome, but exhausting. Now I have a cold coming on… Fun stuff. I unplugged from social media this weekend and may do so for another day or two. If you sent me a message, I will reply after my appointment with my primary care physician when I know whether there is progress in my future or not.