A screwdriver to the hip. A long icy hot intense nerve pain going from hip to foot. That's what every morning feels like these days, for at least an hour before meds kick in. Unbelievable. At least it can wear off a bit as I get moving, but the instability in the right leg is still there -- a feeling like it will buckle if I land on it a certain, unknown, way. Making an appointment to get my pain meds refilled got lost in the end of the year shuffle and I am about to run out, too. This will almost surely mean disability for days. Lost days. Days of not having the dampening of pain signals to my legs, feet and arms which will keep me from moving and living without a manageable amount of pain. Why? Because some people take drugs recreationally, and end up taking too many. Because some people, a lot of people, see this stuff as a way to escape life. I see it as one of the only ways that I have been able to hold on to mine.
I still feel pain daily, sometimes so significant I wonder why I am not giving up. Just because I don't say anything doesn't mean it isn't there. Life has become a game of distraction and avoidance of anything stressful. I repeat in my head "And this too shall pass," several times a day, yet it doesn't. Yes, many people have physical and mental challenges far worse than mine, I know this. Far worse, and I have empathy. But pain is not a competitive sport. I have empathy for all people who live with unrelenting discomfort, and can't see the point of forcing people to suffer by withholding pharmaceuticals that can help. Medication has been the ONLY thing that has alleviated some of my physical suffering. I am not addicted. When the pane wanes, I do not take pain meds. I take as little as possible but can not deny that fact that taking meds has made a huge difference in my life and makes me feel like I have a life. I didn't feel like I had one when living on my couch watching the toes on my feet dislocate and trying to walk.
Someone who doesn't live with this day in and day out, may not understand what it is like. Maybe that is why I feel the need to repeatedly write about it. It is not to dwell on it, beg for pity, or live as a victim. It is to shed light on what it is like to constantly have pain. Education is a good thing, even if the three people that read my blog are more than aware of the results of pain as they've got their own issues to deal with!
It feels cruel to be treated by the medical system like someone who is trying to "score." I can't call my doctor and say "The pain is really exceptional today and I am having trouble walking, can you help?" because they can't. Or won't. Their medical licenses are on the line, and each doctor tells me to go to the other for treatment. Let the other doc put their practice on the line for you. Aren't their pain clinics? Sure, if you can afford them, both financially and emotionally. I went to one when my foot was deforming from RA and told I could have a seven day supply at a time, and was responsible for the cost of having my urine monitored for additional drug taking behavior at each visit. I was also told, but the doctor with thick gold rings on every finger, that I was not guaranteed adequate pain control without repeated monthly visits. With a high copay and medical bills, this was not a good option. Even the pain clinics don't want to help.
Where does that leave the patient?
Sitting here devoting time to writing about the frustration of being a chronic pain patient, if you can call it that. As I am not patient about this issue! Counting pain medication doses out against a calendar and hoping to get through the non-medicated times without too much trouble. Like a big wave, I know it will be coming. It just is so unfair. I don't want my life to be spent shuffling around my house and laying prone on a couch. My dad lived this way for years -- I mean YEARS. Not only is it unhealthy physically to be so immobilized, but the mental torment is immense. I have things to do. Meaningful things. I don't want to be laying still to avoid more untreated pain.
I could have been focusing on art related writing this morning, but this issue needed some exploring, I guess. I took my tablet at 6am and the pain has gone down from about a 8/10 to a 5/10. I'll take it. Is that too much to ask for from the medical world?