When I was a senior in high school, someone asked in my anatomy elective "what is it like to be in pain all the time? Would you like, not really feel it after a while because you got used to it?"
I answered her, because it was a question I knew all to well. I was perhaps the only person in that room who could really answer that question.
"Well it always hurts. But you sort of get used to it. Pain becomes your new normal. But it never gets easy, you just learn to tolerate it and keep going because you can't just lay on your bed and cry all day"
Its 3 am. Unlike the last post that started the same way, this time I am not in dire trouble. This 3 am is a fairly normal parkie 3 am.
People with Parkinson's have insomnia. Its just a thing. I could go into the science of the balance between melatonin and dopamine but I wont. What I will simply say is that your nice daily sleep schedule you have? Parkinson's laughs in its face. But tonight, thanks to Ambien and a lot of benadryl, I did fall asleep. I woke up to a familiar and yet supposed to be under control phenomenon: PAIN.
Ouch. All I can say is ouch. I forgot to change my fentanyl patch. For me, it lasts like 2 and a half days. Fentanyl patches are supposed to last 3 but it just does not. When I had built up enough tolerance of opiods to get the patch, we started with it being a 72 hr patch like it is intended. But the final ten hours or so had me in complete agony. It had simply been burned through, leaving me with nothing for the last stretch of the patch.
Turns out everyone's skin is different. Who knew?
99% of the time, I am super responsible with my patch, faithfully replacing it every 48 hours. Right now things are a little hectic between trips (I am all over the map this summer it seems) and I simply forgot to put on a new patch.
Sometimes I forget that my body is a total mess. Most days, when I have my meds all worked out and my DBS is on and I am hydrated and fed I just go about life like any other person. Then something gets messed up and I remember who I am, I remember that a part of my brain is literally degenerating.
My whole body hurts without treatment. I cant quite describe it. Not everyone with PD has an associated pain syndrome, but I have had it from day one. Pain was actually the first thing I ever felt with my PD. A pain in my ankle turned into full body dysfunction.
I lived with pain for seven years. Before my diagnosis I was on baclofen (muscle relaxant) and tramadol (a 'baby opiod', its like in between extra strength tylenol and norco). That basically took the edge off of my symptoms so I could *sort of* function.
Then I started sinemet at 18, and while I still had pain and symptoms my body was SO much more functional and my pain level was a lot lower. Basically took it from daily 7-8/10 pain to like 5-6/10. I am not exaggerating that number.
After my DBS my physical symptoms subsided a lot. No longer was my body a twisted and mangled mess, but my neuropathic pain got worse. My body just ached constantly. I had my second DBS in December 2015. By April 2016 I was so done. I had a total breakdown, I was just sobbing in my apartment, after 7 years of pain, I just couldn't do it anymore.
My neuro wanted my general doc to handle pain meds (which kind of pissed me off at first, my pain is from my NEURO disease and my neuro wont treat it). My GP sent me to pain management specialist. I was supposed to wait a month, and I called my dad in tears that I would have to wait a month. My dad worked his healthcare navigating magic and got me an appointment in a few days.
When I saw the pain doc, he started me on meds. First we used norco, then eventually I was settled onto a combo of the fentanyl patch and lyrica.
I wont under exaggerate how much med that is. My patch is the equivalent of 6 percocet a day. That is how much it takes to calm my pain. Because its a constant flow, I don't get 'high' its just my baseline now, my body adjusted. And the lyrica caused crazy food cravings for a while, but now finally I stable and happy. It took abour six months to get here.
Not living in pain is amazing. Not waking up to my whole body just hurting is amazing. I had forgotten what that was like.
No one should have to live like that but unfortunately it is a reality for so many. Because of the stigma of pain meds, I waited SEVEN YEARS to get help. Yes, opioid absue is a thing. But there are hundreds of thousands of people like me who no longer cry themselves to sleep because of this medication. Restricting us and labeling us isn't solving anything, its ruining lives.
I wanted to share this because I don't think it is really possible to imagine a life where pain is always present. I know I couldn't have imagined this before it happened. Until this morning I forgot to change my patch, I had forgotten how awful it is to not have this under control. So in a way I am glad it happened, it gave me a fresh perspective. I am learning slowly to love my body again, with all its faults, and appreciating the things that make it work. So right now I am appreciating the little blue patch on my arm for allowing me to feel days without agony.