It’s all About Expectations.

It’s been one month and 3 days since I left my job to stay home in hopes that it would help alleviate my pain. In turn, my need for medications to help control my pain would also go down.

It’s been a month and from a pill count point of view nothing has changed. But it is has changed, the pill count just can’t see it yet. Since I left my job I have started seeing not one, but two physical therapists to help with the back pain resulting from my last procedure. I have been able to better control my activity level and even added exercise back into my life.

Since I started the new physical therapy schedule I have noticed huge changes in my back pain and the ability to rest when I need has helped me control my pelvic pain (at least, the pain related to the PCS). All of these factors mean that I am experiencing less severe pain every day.

I realize that this creates the expectation that my medication use should be dramatically different now.  But it’s not. Not yet. I think the problem here is the expectations set by the people in my life who aren’t me. I know that sounds a little harsh, but hear me out. I think people assume that if I am hurting and I take my meds that I am no longer hurting. Let me clear this up by saying that is not the case. (Note that I said “less severe pain” every day.)

You’ve heard of the pain scale yes? On a scale of 0-10: 0-being no pain and 10 being the worst pain ever, rate your pain. At this moment I am at a 7 on that scale. I am sitting on my couch with an ice pack on my lower back and a hot pack on my pelvis. 4 hours ago I took 100 mg of Tramadol and 1.5 hours ago I took 10 mg of Percocet. I also took 600 mg of Advil about 10 minutes ago. I. still. hurt.  The number before I started the process of knocking my pain down? I am sure you can guess….it wasn’t fun. (side note-today is a bad day)

My point is, I don’t take these meds and then suddenly have zero pain. Zero pain does not exist in my life anymore and it probably never will. Before all of these changes my normal daily number was around 6-7 with my full army of pain control helpers. (rest, ice packs, heat packs, sticky things and medications).  Lately though, I spend more days around the 5 mark (still with the use of my pain control army). So even though my pill count hasn’t gone down, my pain number is.

My “live-able number”-the number I can tolerate on a constant level without taking medications is 4.  I can function quite happily at a 4 all day and not feel the need to medicate, but that hasn’t happened yet, and I am not sure when it will. Do I believe it will? I  do. I see the improvements every day. My body is less tense, I laugh and smile more. I am sleeping better at night and have more energy during the day. I dream of the days when I won’t need any extra medication help except on the really bad days.

One of my PT’s promised she can make me 100% pain-free. My PCP says she wants to see my use x amount of pills a month, or see only 10 days of med usage per month.  I know they have my best interests in mind, but all this does is create a feeling of failure in me when I can’t get there. Because none of  this is guaranteed. I have been here before, heard the promise of pain-free life before every one of my 6 surgeries.  Expected to be able to cut back on less desirable medications at  the beginning of all 20 other medications I have tried. I promised myself that leaving my job would do the trick. Every time it doesn’t work is another time I feel like I failed. I failed myself, my doctors, my family, my friends. Everyone. Every time. I can’t do that anymore.

The catch phrase of These Next 6 Months has always been “It’s all about expectations” and that’s a lesson I learn over and over again. I’ve bit the dirt so many times in the last 3 years that I simply refuse to set myself up to fail again. I have no expectations anymore, simply the mindset of ‘let’s see what this does’ or more appropriately ‘I will take what I can get.’

I know it sounds awful and defeated, but it’s safer than saying “_____ is success to me” and then not getting there. If I didn’t then I wasn’t successful, I failed. I wasn’t able to get to my goal. I wasn’t able to cut out x amount of pills a month, or have x amount of days at a 4 instead of a 6.  Which is a ridiculous thing to do to a person in pain don’t you think? To tell them they have to be pain-free, or only need a certain amount of help to control their pain? Every week in therapy I am told that my pain is separate of me, that is does not define me. I am told that I didn’t ask for this, didn’t do something to deserve this, yet every day I am personally held responsible for fixing it. Like it’s something I am doing wrong.

If this is not my fault, and it doesn’t have anything to do with who I am, why do I feel like I am doing something wrong every time I have to swallow a pill or take a break or get another ice pack?  Why can’t I just be happy that things are improving, even if I am the only one who sees it so far? Why is it that I have this constant pressure hanging over my head to be tougher, suck it up and handle the pain just to meet a certain expectation? Why do I feel like I have to apologize to the PT who said she would make me pain-free and couldn’t?  I am, after all, the one who has to live with this..aren’t I?

Maybe I should be the one to set the expectations then?


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