Pain. We all feel it. The only difference is how much we feel. That’s why doctors invented the pain scale. It’s a way to measure pain when patients can’t describe it. A ten is the absolute worst pain you’ve ever felt. On the opposite end of the scale a one indicates hardly any pain at all.

Most of the time the pain scale is effective; doctors can ascertain pain levels and treat the patient accordingly. Sometimes though, the pain scale lies. What gets logged as a four is actually an eight. Why does that happen? Patients are stubborn.

I am one of those stubborn patients. I’m not sure if I always have been. I don’t remember how I handled childhood injuries, but it wouldn’t surprise me if I had a high pain tolerance. Actually, I don’t know if I’d call it high pain tolerance. I think I’d just call it lack of willingness to admit defeat.

I get things called bowel obstructions a lot. Without going into too much detail they’re a complication from a surgery I had when I was very young. They’re like constipation but worse. The first time it happened I’m pretty sure I was around eight years old. I was screaming bloody murder and begging for any pain killers I could get. The years went on and they kept happening. It got to the point where most of the ER staff knew me on site. They happened so often that I could tell how bad the obstruction was and what treatment the ER was going to have to administer before we even got to the hospital. I wouldn’t bother screaming for pain meds anymore either.

I went through a period of about a year where I was obstruction free, but as bad things always do, they came back. It was near the end of July, the night before camp. I started feeling the pain late in the afternoon. Being me, I ignored it. I knew what was coming, but pushed it to the back of my mind and went to take a shower. By the time my mom helped me out of the shower I was in a lot of pain. My back was in full spasm from all the cramping and I couldn’t really focus on anything. It was only at this point that I started to actually show I was in pain. I spent a good majority of the rest of that night hunched over in my chair trying to relieve the pain by simultaneously putting pressure on my stomach and stretching out my back. It worked…sort of. The pain eventually got bad enough that I vomited. Vomiting apparently helped because I was relatively okay the rest of the night I went to bed and woke up a little sore, but more or less fine the next day. I ate a pear for breakfast before mom and I headed up to camp.

About half an hour into the trip the pain started ramping up again. I ignored it, telling myself I would be fine once the pear digested. I was right for a few hours. By lunch I was in quite a bit of pain. I ate half a tuna sandwich anyway. Bad idea. We got back to the cabin and I resorted to my routine of hunching over in my chair. When that failed I laid down. Since it was rest period anyway no one thought anything of it. After an hour or so I started feeling nauseous and asked for a basin just in case. I mentioned my stomach felt sick, but didn’t tell them anything else.

I toughed it through the rest of the afternoon’s activities, but by supper I felt terrible. Of course no one knew this until I vomited. By that point there was no more hiding it. Everyone knew I was sick. I still didn’t want to leave camp though. We did what we could to treat it, I babied my stomach for the next couple days, and everything turned out fine.

The above story is a long one, but a necessary one. That’s pretty much how I handle any pain. Unless it’s really bad nobody knows about it and I don’t do anything about it. I just sort of wait it out.

I think some of my stubbornness in regards to pain is just a result of having CP. Something pretty much always hurts. My hips, my back, my legs, no body part is off limits. The only pain that freaks me out now is pain I’m not familiar with. Some might call that strength. I call it normal.

I originally didn’t want to write this piece, but I realized that if someone else wrote it I would want to read it. I would want to know that someone else out there handled things the same way I did. I hope this piece does that for you. I hope it lets you guys know that you are not alone and that there’s someone else out there who knows what it feels like. I’m just a message away if any of you need to chat.

What are your experiences with pain? Or if you are a parent, how do you deal with your child being in pain? Leave your comments below! If you enjoyed the post please consider sharing it on your favourite social media platform as it helps us out. Thank you! 

7 Responses

  1. I liked your story i have cerbal palsy and deal with pain on a daily basis it’s nice to know that other people go though pain to with having cp.
    Thank you again
    Hope Darby

  2. Hi,

    I have a daughter who just turned 18. She is wheelchair bound completely and is non-verbal. She had a spinal fusion surgery in 2011 to help the 51 degree curve and twist in her back. The surgery went from T3 to sacrum…pretty big. During her recovery she did so well, it was amazing, I was blown away by her happiness. It turns out she was in pain a lot – she responded yes when I ask her “has your back been hurting this whole time and now finally feels better because of the surgery – even though it still hurt form the surgery itself”…so having gone through an entire back fusion, she still felt better than she did before. I never knew or realized that she sat there in pain all that time. But now, I am more inquisitive as to whether she is achy or has any pain. Sitting in a wheel chair and/or laying on her back – her only options really has got to make things stiff and sore. Thank you for your insight, as this will help me, help her.

    Thank you,
    and Izzy – she is my daughter and we will be reading this together when I get home.

    1. Hi Heather, thank you for taking the time to share your daughter’s story with me. Can’t say blame her. If she was in pain for that long any amount of relief, even with residual surgery pain would feel good.

      I’m glad this post has shed some light on what your daughter goes through.
      All the best,

  3. My husband has cerebral palsy and is in pain daily. He is like you, no one ever knows until it gets so bad he can’t take it anymore, except for me, his wife of 25 years. He has a pain doctor that refuses to up his pain meds. My hubby is having surgery to repair the tendon that has torn from the right elbow. He has been dealing with this for a couple of years, and has so much break through pain from that and his knees. All the cartilage is gone in between the bones. How do I as a spouse help? I want to take away the pain and I can’t. I have tried massage, heat, cold, everything. With the pain doc not willing to help, what are our options?
    Thank you for these articles as they really do help alot!!
    Paula Hawn

    1. Hi Paula, I’m sorry your husband is in so much pain. Unfortunately there’s not much you can do to help. If your husband is as much like me as you say he is then he is a very proud person. He probably hates having people worry and fuss over him It’s probably taken him a good chunk of the 25 years of your relationship to build up the trust to even tell you he’s in pain. You go to bat for him with the pain doctor and he will probably feel very uncomfortable and weak. My best advice is to just be there for him. While it may be hard to imagine, he knows what’s happening to his body and he’s used to it. Don’t hover over him. If he wants to talk, let him. If he wants you to re-position his body or massage a cramp out, do it, but let him come to you.
      Best of luck,

  4. Hi Shanley,
    My name is Andrew. I also have cp. I really enjoyed your post and can relate on so many levels. I have dealt with pain my entire life. I’m so use to falling that pain is just part of it and never thought too much about it until I read your post. It also got me to thinking about my knees. I have pretty much always had bad knees from falling so much. Up until this past January, they constantly hurt all day and even made that horrible grinding sounds when I would get up or sit down, mainly just my left one which has always been weaker. I started taking something called zeal. It has all sorts of natural super foods and natural anti-inflammatory ingredients. After two months on it I have been pain free for 7 months. It has been awesome! I just wanted to let others know and hopefully help them too. Here is a link for anyone who would like to know more or know how to get it! Thank you again for posting such a great post that most of us just deal with daily and never think about enough. God bless and thank you for your time making other’s aware!

  5. I know what you mean Shaylee, Paula if you read this take heart. Being someone with CP and being marred (though not yet for 25 years, Kudos!) it can be a balancing act in telling your spouse what you’re feeling. Too little information and they’ll feel left out or untrusted. Too much information and it leaves them (mine anyway) worrying and stressed they can’t do anything to help you. I’ve dealt with pain as far back as I can remember so most of the time I barely notice it and just absentmindedly massage the suddenly aching joint or tense briefly before moving on. I do everything I can to prevent my physical reality from ruling my world but sometimes I have to step back and acknowledge defeat. Having her here and having her understanding helps with the long term sense of mental defeat.

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