Pain

I promised I would write here more.  I feel like I should be saying something profound for some reason, but if I only write when I have something profound I may never write.

Today is a bad pain day, and yesterday was bad, but not as bad as today.  The day before, I didn't need any extra pills, but the day before that I did. Two days in a row before that I didn't take any either.  There seems to be no rhyme or reason to this.  I can't see a pattern.  Some of it has to do with the adult brief and pad that I have to wear, more bulkiness under my butt, and sometimes there are wrinkles or bunches in them that are just a function of them being absorbent.  (I refuse to use the "D" word.)   The pain is basically from sitting.  I only have two options.  Sitting and laying down.  I really don't want to spend more time in bed than I already do. **

I take codeine every day; T2s before I get out of bed and time release twice a day.  I am allowed to take more T2s or hydromorphone about 5 to 6 hours after the first dose.  The last couple days it's been hydromorphone.*  All of these opiates lead to crazy constipation which means I have to take fairly serious laxatives. To make matters worse, my smooth muscle is affected by this disease, as well as skeletal.  This means that the muscles around my intestines are getting weaker.  I was in the hospital over a month ago for what we thought might be a bowel obstruction.  It turned out not to be and the treatment they tried worked very well.  The problem is that I cannot get to the bathroom in a timely manner.  I hate having accidents.  It's gross and embarrassing   I suppose this is the bright side of wearing briefs and pads; things are more contained.  I am experimenting with dosage of the laxatives to find a happy medium between being regular and not shitting myself.  It's depressing.

It's another thing that I feel that my body has done to me.  Dignity gets more scarce as time goes on.  I never expected this to be one of things that changed. It just never occurred to me. I can usually see ahead to what is going to happen next.  Things get slightly more difficult, then difficult and then I can't do them anymore.  This isn't something I foresaw.

There is the option not to take the pain pills, but being in pain changes me.  I spend time and energy, mental and physical, ignoring it.  Pain makes me tired.  I am less able to enjoy life.  I am less able to hold conversations, to pay attention to the people and things around me.  My partner notices that I zone out more.  I tend to focus on TV shows or movies.  In fact, I notice that I watch shorter shows and avoid movies when I'm in pain.  Some days, I try to be stubborn and not take the pills, but I ask myself, "What is the point of doing that?".  My partner tries to encourage me to take the pills and not be stubborn.  I'm afraid of becoming addicted.  I talked to my doctor about this recently and she said if I was going to become addicted to anything I would have already.  I was very relieved to hear this, but I still worry anyway.  She did say it is possible to build up a tolerance to the drugs.  I'm not sure what happens if the codeine stops working.  I move up to hydromorphone all the time?  What do I do if that stops working?  It worries me.  We are trying to change my seating on my wheelchair (new cushion and back), but it is slow going, it will be more painful for the first couple months at least, and we have no idea if it will actually work.  Discouraging to say the least.  The story about the seating is another blog post entirely.

*Side note:  I react to opiates and other medications differently than other people.  I seem to need more pain pills, of any kind, than other people to get rid of the same amount of pain.  Sleeping pills usually make me high instead of sleepy.  The first sleeping pills I ever tried made me slightly hyper.  I always wake up from anesthesia sooner than expected, and I usually do not become unconscious easily.  Anesthetic always works, but I wake up early.  Also, at times doctors thought I should be unconscious (low oxygen levels) I am up and awake.


**Right now I spend about 13 hours in bed per day.  I actually get into bed around midnight and then start getting up at 1pm.  Needing 10 to 12 hours asleep at night is very annoying.