To Drug or Not to Drug

I usually find that I don't need as many meds when I just stay home and veg. When I'm "trapped" in public, I seem to need more. Flying is hell for me - stuck in a small space with no opportunity to lie down for hours. It's always a trade-off, sharp pain or the blah feeling from meds. I try to sleep without meds sometimes at night to avoid building up a big tolerance for them, but then after a couple nights of problem sleep, I usually take a bedtime cocktail so that I at least wake up well-rested the next day (even though my tailbone will throb).

I get so tired of doing this day after day. There's no therapy left to try. I'm stuck in this chronic pain condition and I feel like my life has withered away. I think about what I was doing 2 years ago before this happened, how naively trusting I was of the orthopedic surgeon that did the microdiscectomy that made everything so much worse, and what my life could have been. I border on modest depression most of the time. Everyday it's a matter of when and where the pain will hit, not if it'll hit. Little things like going to work or cleaning up at home become a challenge. I live in this world of pain that's invisible to most people and that most people can't comprehend what the range of symptoms feel like. I dream about it going away at night or at least getting some more relief from it, but it's the same crap in reality day after day. I get pissed when people ask if I'm feeling better. It's a chronic condition, it doesn't get better.

If I Could Sell Off Part of This Problem

Lately I've been thinking about the "too much" feeling I have. If only:
- My pain was on one side, not both
- My pain was in my feet, not my legs and butt
- I had neuropathic pain, but not the aching pain in my lower back
- The disc rupture had been a little smaller
- I'd realize the significance of the little warning signs I had about my discs prior to the blow-out
- I could look forward to feeling better in the future
- I could sit, walk, and sleep more easily
- And so on...

I feel exhausted a lot, still. I've also become quite reclusive. Not voluntarily, but more because it takes so much energy to go out and do stuff, and often the pain flares up and ruins the experience. I've been frustrated lately -- I wasn't expecting to have a big health problem like this in my 30s (nor get to carry it for the rest of my life). There's not much improvement I can make or do at this point. I'm tired of life being me saving all my energy for work, then coming home to rest and recuperate. Most people don't sit and smile at work while their legs are on fire or their rear end throbbing. But I pull it off and people seem surprised to know I have a condition at all.

Continuity and Change

I've pretty much been running the spinal cord stimulator all day, everyday. They told me that I was a high utilizer during my trial, which ought to suggest that the amount of neuropathic pain I have is significant. I guess that makes sense - it explains why I'm so tired all the time, dealing with the pain. It's draining. I get so annoyed when people (including medical providers) think it's my lack of trying or that I'm depressed. Do people think I was ambitious all my life but in December 2007 I started faking a health problem so I could lay around home all the time?

When things began to go down the tubes last August, I kept waiting for things to turn around. I was on the model of "get worse then get better." I focused on every little thing that plausibly could be considered an improvement - was I able to cut back on meds, did I manage to do this or that. After a while, I realized that I wasn't getting any better, and it didn't make sense to have unrealistic wishes for the future. The pain was here to stay, so there was no point in cutting out meds that made it more bearable or trying to do physical therapy exercises that worked for others but just worsened my pain levels.

In some ways, the hopelessness was hard to bear. There's not much to look forward to in terms of my neuropathy. On the other hand, I don't have to get excited thinking that maybe I'll sleep better tonight or I won't wake up in pain tomorrow, because my expectations are realistic. And I don't have the disappointment. I can just accept that things suck and don't have to burden myself with pressure to get better. I can say it's ok to take things easy, know that I'll be on edge due to pain levels, not keep the condo as clean because I can't bend over and scrub the floor easily, be tired since my sleep was disrupted, etc.

sleep

I can't sleep! I always wake up at least 2-3 times a night, no matter what. There is no good position for me. I already have noise machines, soothing music, and bedtime rituals to help me sleep. Medications can help get me to sleep, but I haven't taken anything strong enough to put me out for 7 hours. The shooting pain always wakes me up at some point. I try staying in bed longer - e.g., 10 hours in hopes of getting 7 hours sleep - but that never seems to work. Then I end up napping, too, to make up for the sleep deficit. I flagged this as an issue with the doctor, but after one year of sleep problems, I don't really expect improvement. People say that the exhaustion on my face is how they know I have medical issues.

Retrospective

It was this time last year that I started to get horrible pain in my sacrum and coccyx, along with numbness and pain in both legs. I started freaking out, realizing that my microdiskectomy had failed. The pain got worse and worse, and I realized during my P-town trip that this would be the last August vacation I ever took with tolerable pain levels. From there things got worse - me missing work, not being able to sleep, the surgeon thinking I just needed a little acupuncture, the PCP thinking I needed an anti-depressant, me crying in front of my boss in pain one day, the boyfriend at the time not understanding why the sudden change in my behavior, and lastly the ER doctor who realized that something was seriously wrong and yelled at my PCP and surgeon and gave me vicodin. I realized never again would my life be "normal." The things I took for granted - being able to bend at the waist, sleeping through the night, scrubbing floors, moving furniture, yardwork, etc. - it was done. No more running, weightlifting, or rowing lessons. Biking - well, ok, as long as I didn't mind the pain in my coccyx flaring up for several hours. Sex became a form of torture. I lost 25 pounds in about 4 weeks due to the pain. Having to listen to everyone talk about my depression - rather than my new chronic pain condition and my failed laminectomy. Laying in bed and not being able to motivate myself to get up and do anything. Just thinking about everything I'd lost. Wondering whether I'd be able to keep my job and whether I'd be able to sit long enough to get through a movie. Not knowing how to deal with the pain. Going from active and strong to lethargic and weak. Having my skin start flaking everywhere due to my body being shaken up. Muscle tension galore and nerve pain in an array of spots. Crying in the bathroom at work from the pain. Fortunately, I was referred to a sympathetic pain doc who knew which treatment algorithms to run me through. Sadly enough, I have a neurostimulator today - but it's better than nothing. The meds helped a little, but never enough. I quickly realized which friends were helpful and which ones couldn't deal with suffering. I realized how far I was geographically from my family, not being able to make roadtrips anymore (too much time seated). Air travel became torture. Hot baths became my savior. Learning how to medicate for the occasion. Wondering if I was on the right meds and dosages.

I look back two summers ago and think about life then - going out to bars, dating, superficial interest in work, vacations, exploring things, etc. So frivolous and fun. Now those things are so in the past. Now I focus on getting enough sleep, pain management, balancing a job, and maintaining a little contact with friends. I'm bothered constantly by the unchangeability of my condition and everything I've lost. No one I know can relate to this, especially people my age. I wonder why this happened to me, why everyone else seems to have conditions from which they recover or that don't impact them to the degree this impacts me. My daily routine was totally disrupted. No more gym time, no more vacations that involve a lot of air travel unless I'm feeling sadistic. I can't imagine dating - my personal stuff takes up so much time. Maybe I'd have time for a cat, though. I bought a condo before everything went down the tubes. Sometimes I think about how I expected life to be here versus what it turned out to be. I spend so much time at home. It's a nice place to be, but I'd hoped to have been out more.

On the bright side, I rarely think about suicide anymore due to the pain.