When dealing with chronic pain associated with degenerative conditions, it seems like there is a constant need to redefine what normal pain is. This seems like it should be easy. It is very confusing sometimes.
Often, I find myself sitting down and assessing myself. First thing in the morning, I have to take inventory of myself. I still have a bad habit of hopping up to my feet. I should know better by now. I’ve managed to hurt myself, mostly sprains, by doing this. The pain normally stops me from accomplishing this maneuver. I find myself falling back to a sitting position instead of falling flat on my face, or worse. If I am distracted though, due to long practice, I can push past the pain and can cause myself considerable damage.
Morning pain is different from afternoon pain and evening pain.
At the end of the day, I need to make a determination as to whether today was better or worse than the day before. I also need to take stock of my achievements for the day. If there was anything of note in regards to symptoms, I take notes for my doctors. If there is a particularly downward trend from day to day or week to week, I make an appointment with the appropriate doctor.
Sometimes, I have to sit and think “This is my new normal”.
Luckily, my daily pain has been reduced between medication and physical therapy. That doesn’t mean that I am cured. I am functional about 4-6 hours a day. That’s all that I can expect at this point. I haven’t given up. I’m still working my way through the gambit of tests and specialists. I feel like I’m closer to understanding what is wrong and even some of the causation.
On that point, I want to say that we all must be alert when taking medications. Simply relaying your symptoms or side effects to your doctor may not be enough. I am so sensitive to medication that as a young woman I was bullied by medical professionals into believing that I was causing the symptoms of side effects because I had read the pamphlet in the packaging and convinced myself that I was experiencing them. Psychosomatic symptoms. I remained on birth control pills until I was anemic, vomiting every meal, and so weak that I had a hard time standing. I thought that it was my fault. Once I stopped taking them, I improved greatly. I still had problems with my digestive system. It took months and ulcer treatment to overcome it. I have more recently had a similar experience with lamotrigine. DRESS is a serious side effect that does not affect everyone. It is mostly an issue for children and the elderly. I won’t go into the entire litany of possible symptoms. I want any one reading this to understand that you don’t have to have severe or every side effect of a medication before you may be in danger. The cumulative effect of taking some medications can be devastating to your body. Do your research before accepting any medication. It does not make you a bad person to take the paperwork from the doctor and decide to ask for alternatives. A doctor who refuses to treat you because you ask questions and want to be informed is not a good doctor for you.
I’m still recovering. Every day feels like it is different and maybe it is. Luckily it is always improving.
Good Luck. Fight Hard and Never Give Up.