Having lost the feeling in my legs and living in pain made the thought of dancing seem impossible. My husband and I attended a Halloween party over the weekend. I was just excited and happy to be there as last year I was in the hospital recovering from one of the multiple surgeries.
As I sat next to my husband watching people come into the party dresses as various characters, I turned to find an old childhood friend. She recognized me immediately, we talked and made me smile and laugh. She vowed to get me up to dance. My fear that I was going to be unable to do so set in. How could I dance being that I walk with a walker and I can only feel my left leg? At least my pain level was fairly low at a 5.
I stood next to my husband near the seating area and moved a bit to the beat of the music. Oh, how I missed dancing and moving. After all, I was a dancer most of my life performing in various places over the years. It has been one of my the biggest losses. Loosing the use of my legs, not being able to feel or move is one of the hardest things I have had to deal with. The thought of not being able to stand cheek to cheek with my husband and move slowly to the music help bring my spirit down.
Standing and moving felt amazing. It was a bit scary, but invigorating at the same time. My pain level remained low at about a 5. My friend came over and signaled, “Let’s go.” So I followed her with my walker out onto the dance floor. I began to move to the music. It felt great. I had to keep looking at my feet as without looking at them my brain has no idea where my feet are in space and I will fall over. I held on to my walker and began to move my feet and body. It was an amazing feeling. I never thought I was going to be able to do this again. But yet again, God blessed me with a special gift.
For the brief moment in time I felt great. My pain was low, my legs held me up and moved to the beat. I smiled and felt alive. I will cherish this moment as I don’t get many of them. So thankful for my blessing. Lord, thank you for all you give me. I still struggle from day to day as my pain fluctuates. I only hope that as I continue to go to physical therapy that my legs with get stronger and work better. I hope that I will move from a walker to a cane. That I may regain some mobility and self-worth. I hope that my pain level will drop so that I can enjoy more of my life. For now all I know for sure is that God continues to be with me and watch over me. He continues to help heal me. For this I am blessed.
So thankful to be alive another day. I only wish I didn’t have to live in pain all the time. Even with pain meds I can’t control the pain. Living with a spinal cord injury is not what I planned for. Nobody plans for this. Who would want to wake up everyday with a pain level of 5+? Who would want to find it difficult to even stand or walk? I realize that there are those who can’t even walk. I am thankful that I at least am able to walk with a walker and I am working on improving my ability by going to physical therapy three times a week.
Even so the questions keep coming. When is it my turn to wake up not hurting? Will I ever get a break from the pain? Will my legs ever get better? Will I ever get feeling back in my right leg? Will my proprioception ever get better? When do I get to run and play with my grandchildren or will I ever get to kick a ball with them? These are just a few of the questions that run through my head daily and sometimes several times a day.
Some days it is hard to deal with it at all. Just getting up and taking a shower takes all I have sometimes. First, just getting undressed is extremely painful. Taking my shirt off feels like the skin on my back is being sliced open by sharp pieces of foil. Next, the water that should be refreshing feels like spiked fireballs hitting my skin.Then drying off feels like being my skin being dried off by sandpaper. So you can only imagine how hard it is for me to put clothes on. I put on my Lidocaine pain patches first which is a not an easy task. I have to balance myself and use both hands to apply the patches to my back in the areas where the burning and pain come from. Often it takes several tries to get them on correctly, on days when my husband is home he helps me. This task alone causes extra pain, but eventually the patches help to reduce the pain some by numbing the area some.
I hate having to take so many medications. I take Baclofen 20 mg three times a day to help reduce the spasms in my back and legs, Gabapectin/Lyrica ( changing meds slowly), OxyContin 30 mg every 8 hrs., and Oxycodone 15 mg every 4 hrs as needed for break-through pain. I also have to take Senna 2 tabs every morning along with Miralax and Metamucil to help keep myself from getting constipated as taking all the narcotics slows my bowls done. Even so, my pain is often not controlled well. This makes life difficult and causes me not to be able to do many of the things I like to do.
Getting out with family and friends is very difficult. Most people don’t understand the amount of discomfort I am in nor do they understand how to be around me. Yes, I need help with some things but not everything. People tend to want to help by treating like I am incapable of doing anything. For example, I can walk with a walker slowly, but I don’t need to be held like I am going to fall over. I can also walk up and down stairs fairly well and don’t have be held up. But when I need to stop and rest, I need to stop and rest not be treated like I am falling over or I am about to die. What people forget is that doing as much as I can for myself is important. It helps me recover and feel a sense of accomplishment especially since I have lost the ability to do so many things. Feeling like I have value is important to recovery. I only wish those around me understood that.
My hope is that people who read this will understand that if they or someone they know is going through anything similar that they are not alone and that are others that understand what they are going through. Whether it be pain or loss of function or both, we still have value. We still want to be treated like we count not like we are fragile and incapable of contributing. Yes, we may need more time to complete a task, but give us the chance and if we need help we will ask for it.