I’m often asked what my pain level is using a scale from 1-10. I don’t know why this is so hard to answer? My pain level is insidious. It creeps up on me depending on the activity I’m doing that is causing it to flare up. But the baseline pain is always there. It is like carrying a 50 lb bag of dog food on my hips only, I never get to put it down. I’ve learned to live with this pain carrying it with me wherever I go.
Activities that will increase my pain? Anything that requires prolonged standing. Or twisting or bending. These activities are the things I used to do without thinking about them. Now, I have to push myself to do them knowing I will hurt during and afterwards. I started describing my pain, to my husband, as “malaise”. You know, the “blah” feeling you have when you have a cold or the flu. It’s just a “blah” feeling. He tells me this is “pain”. I tell him I’m just carrying that bag of dog food like normal; that I need to push myself to do more. So I’ve termed this feeling as “Palaise”; pain + malaise put together.
I can take a pain pill that will help with the really bad pain. I usually take when I’m about to do something that will hurt. Or I take one when the pain gets ahead of me and my tears just flow. I hurt so bad that I just cry. I need to take the lowest dose made and break in half to keep from feeling “fuzzy”. Feeling fuzzy is as bad as the pain. It keeps me from having the energy to do the things I want to do. Only when I feel fuzzy, I can’t think so I’ve lost both physical activity AND mental activity. Not good!
Since I don’t take my pain pills very often, hubby had an idea about trying a sustained release pain med. He talked to the doctor who agreed to prescribe it. Hubby got the prescription, got it filled and brought it home. I had my doubts but I am willing to try anything to be able to “live life”!
OMG! It is the most amazing thing ever! One tiny pill and my pain evaporates from everywhere! Not only is the “palaise” gone but my knees don’t hurt any longer. And my hands… I don’t have to think about using them like I normally do. My hips allow me to walk without creaking and I can walk! I don’t have to think about where I am placing my feet; I can just walk in whatever direction without calculating each step I make.
As a sustained release med, I am supposed to take twice per day; every 12 hours. I’ve found this med lasts closer to 16 hours. SIXTEEN HOURS of pain-free movement. I feel like “me” again. I can do whatever I want without calculating how long I will need to stand (or twist or bend). It is the most amazing thing ever! I have my life back!!
Close to 16 hours, I feel a heaviness in my hips. A twang of pain in my low back. The original pain comes back hard and within the hour, I’m back to carrying that 50 lb bag of dog food on my back. Yes, I can now rate my pain. It’s a 7 or 8 especially after being pain-free for 16 hours! I can’t believe that this pain has become my norm; that my “palaise” is just what I’ve been living with accepting it as “my life”!
Surgery is scheduled for January 10th. The plan is to refuse L4-5 adding L5-S1: a two-level fusion. The neurosurgeon said he would really “open things up” to clean out bone spurs and decompress where the nerves are being pinched. I know that is going to hurt when I wake up! Cutting through the muscles will take a long time to heal; and the acute pain from the surgery… NOT looking forward to that! But if he can make my “palaise” go away… That is my hope. I hope to never have to carry that 50 lb bag of dog food on my back ever again! This is my Christmas wish!!
P.S. I have a web cam out in my barn to make sure my donkeys are doing well. Any activity sends an email to me. Every morning (and night) I get these emails showing my dear husband mucking their stall. It is not heavy work but it does require bending. He cleans their stall, adds pine shavings, and makes sure their heated water buckets are filled. I’m so very grateful he does this; it is what I used to be able to do and want to be able to do again!