Full-Time Chronic Pain Patient: Exactly What I Was Trying to Avoid

As I laid in bed resenting the fact that I have been stuck in my house for the entire holiday weekend from intense pain, my husband asked me, “What are your plans for the upcoming week”? My very first thought was, “I hope I’m healthy enough to leave bed”, but that sounded too negative in my head, so I picked up my phone, looked at the calendar and said, “The next two days I’ll be free and then I have a doctor’s appointment Thursday & Friday”. He didn’t say anything back, and I said to myself, “Talk about a depressing response”. When I was doing better and not a full-time pain patient (like I feel these days) my response would have been, “Working all week of course and then meeting XYZ for dinner Tuesday, swinging by the mall after work Wednesday, meeting up with my mom on Thursday and then you and I will be at the beach on Friday”. My life doesn’t resemble anywhere close to what it used to because I’m not capable of doing the things I once was. I don’t dwell on this frequently, but when I’m laid up in bed it is hard not to think about.

I haven’t worked full-time in seven months; even though you may think that would be relaxing, its been the worst months of my life. I’m sure a lot of people would like the chance to stop working for such a long period of time. They might make time for hobbies and seeing friends they’ve lost touch with; maybe even do some traveling. Instead, my leave of absence has caused me to have no hobbies, rarely see friends, and barely leave my house. Its made for terrible financial times, and more fighting in my first year of marriage than in our 12 years of dating. Chronic pain is a force I never anticipated dealing with on such an intense scale. I’ve been a sufferer for over 14 years, but until the last three, I’d never had so many doctors appointments and health related tasks. Now I live doctor appointment to doctor appointment, anticipating them the way I used to look forward to having a long weekend off work.

I have a “team” of doctors made up of a pain management doctor, his PA, a pain psychologist, her referring psychiatrist, my primary care doctor, the migraine specializing physician, a neck & back surgeon, a wrist surgeon, an integrated health doctor, my physical therapist, and a chiropractor. A few doctors I meet with every few months, most I meet with once a month, and one I meet with once a week. The appointments keep me pretty busy; I typically have a bunch of prescriptions to fill afterward that always give me complications at the pharmacy because some of them are rarely distributed. A standard doctors appointment usually takes up half of my day with all the additional follow up activities. Sometimes the appointments steal my entire day or multiple days and require me to have a driver because I need sedation due to a procedure. Typically appointments like that are when I’ll have an epidural or facet joint injection in my back or neck. Just the other day I had Radiofrequency Ablation (RFA), which is where radio frequency waves are used to produce heat on the nerves surrounding the facet joints on either side of my cervical (neck) spine. By generating heat around the different nerves, they become destroyed and their ability to transmit pain signals to the brain is destroyed. It hurt a significant amount and as I write this, I’m currently laid up from the procedure.

My husband took me to the RFA procedure first thing in the morning, then took me home, and had to leave to work a half day. He’s come and gone in our bedroom the last 5-6 days and speaks little about what’s happening. What’s happening is that I look terrible, feel even worse, and have a terrible attitude & mood; I’d want to stay away from me if I could. The fact that he asked me what I planned to do this week was his way of saying, “I hope you are not confined to bed after today”. I hope that for myself as well, and I am feeling a little better each day, but the unpredictability of pain leaves me knowing I can’t schedule any tasks for the next few days. It makes me sad that people don’t understand the unpredictable element of pain; I wish there was a way to make them understand better.

For now, I have to accept the things I AM able to do as little wins throughout my day. Today I took a shower & washed my hair, that’s a huge win. I cleaned up a little around my house; just enough so things aren’t piling up on top of me. I also made myself a quick lunch. Tomorrow – I hope – will be filled with more wins, until I find myself back into my regular pattern of pain management. If you’re reading this and you find yourself in a flare-up situation, counting the days until your next doctors appointment, feel free to browse the resources tab at the top of the page to see what I occupy my time with, and what helps put me in a better mood. One of the reasons I look forward to the doctors appointments is because they take the time to listen to all of my symptoms and work with me to come up with solutions for how to properly manage them. I might say things like “my neck hurts” or “I don’t feel well” to my friends and family, but there’s no one other than my doctors that I tell the whole story to; perhaps that is why I look forward to the visit so much. Writing my thoughts down also helps, so journaling and belonging to an online support group is extremely important for my mental sanity. Currently I belong to a support group facilitated by Jenni Prokopy of ChronicBabe.com. In her group amazing women share their highs and lows with chronic pain and their vulnerability is rewarded with compliments and/or recommendations.

Writing down emotions pouring out of you in a journal or talking with people who are going through similar situations is a cathartic experience I recommend for anyone suffering from the draining lifestyle that is chronic pain. It helps me to “plug in”, recharge myself, and not take my pent up frustration out on those around me who are only doing the best they can.

Sending you healing vibes,

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