Standing doing my hair without any assistive devices! My balance has improved thanks to doing yoga with an instructor 2x per week (5 weeks so far) and using my LifeGlider.
I did have a recent fall🤪. I was bending down to pick something up off the floor, I had undone the safety belt on my walker as it was restricting me,there was water on the floor and my legs slipped causing me to loose my footing and down I went. Not smart on my part. Just because my balance and proprioception have improved some does not mean I don’t have to continue to pay attention to what I am doing. I still have to remind myself of walking hill to toe, to pick up my feet, and not to lean forward. Old habits are hard to break!
I am still excited about all the progress I am making. I know I am not doing this alone. Thank you everyone for your continued prayers and your words of encouragement. I know God is with me and because of this anything is possible. His promise to be my side every step of the way helps to keep me moving forward even when there are set backs.
In our lives we all have those little moments (small encounters) when you walk away smiling and thankful for the experience. I recently had such a time. My family and I had gone to the movies, and when it was over, it was time for a much-needed bathroom break. Of course, there was a line after all it was the womens’ bathroom. While waiting in line there were two young girls and their mother. One of the girls looked to be about 5 and her sister was a bit older. The younger girl said to her mother in a not so quiet voice, “what is wrong with her? Why can’t she walk and stand?” The mother looked mortified and attempted to quiet her daughter. I turned, smiled, and explained to the girl that I have a spinal cord injury but in terms she would understand. I said, “I have an owie inside my back. It makes it hard for my brain (pointing to my head) to tell my legs what to do. My signals get mixed up.” She then asked, “We you born this way?” I told her, “told her no, my back got really sick about two years ago and I had to have special surgeries to my back. One of the surgeries made me brain and my legs stop talking to each other like hers do.” I also explained that I use my walker to help me get around and it helps me to keep from falling because I lose my balance frequently. As I finished washing my hands I turned to the mother and girls and said, “Thank you for asking questions. I love questions. “
This small encounter was a blessing. Often people just stare or stare and point. I can tell that they have questions and are guessing as to why I am in the state I am. I only wish more people were like the younger children who ask or at least speak out loud and say things like, “what is wrong with her? Or “how come she can’t walk?” Young children often have no filter and are curious. They don’t worry about or intend to be hurtful. So, why should I get upset by their comments or questions? Instead I view them as a blessing. It is another opportunity to help educate others about my conditions and show them that being different is not a curse.
I believe these little encounters are little nudges from God. He brings people into our life for different reasons and for different amounts of time. Some are brief and others for long periods of time. But weather brief or not I don’t want to miss the opportunities (blessings) that I am given.
Your life may not be where you always envisioned it would be just yet, but all you have is now. Remove the unrealistic expectations and unfair demands of perfection you’ve placed on yourself…close your eyes…and just dance. Really experience life. Really experience God’s love. Enjoy the knowledge that you belong to the Lord and feel the joy of sharing Him with others. Enjoy the life God has given you as you cast every care on Him!
Prayer: Father God, thank You for the life You have given me. Show me how to fully live it without placing demands of perfection on myself. Help me to just dance, just live, and enjoy the gift of life You’ve given me and live it to the fullest in You. In Jesus’ name, Amen.
My life changes what seems like daily. Living with chronic pain, dealing with a spinal cord injury which left me with deficits all the while still being a wife, a mother, and grandmother isn’t easy. Yet, I know that I am here for a reason. Each day I open my eyes I am thankful for another day I get to be with my family, enjoy everything around me to the best of my ability, and to have the opportunity to keep moving forward. Even on the days I feel like I am going backwards, I know that God is still with me working on me, refining me.
Catching a cold normally would not bother me much, but since my spinal cord injury it causes all kinds of issues. I can deal with the sore throat, runny nose, and congestion, but the extra pain and spasms it causes are unbearable at times, sending my pain soring to an 8+ at times. The overall skin sensitivity is also elevated making it difficult to get dressed and move around.
Most people when they catch a cold are still able to somewhat function and don’t have to worry about loosing bladder function. Unfortunately for me, getting a cold means stronger more severe muscle spams in my back which then trigger my bladder to want to empty. Even if I have just gone it will still trigger the response and I have to make a mad dash for the nearest restroom. Just another fun issue associated with living with a spinal cord injury.
Having a cold also reeks on my spasticity. It increases the muscle stiffness and the rate at which my muscle tire. Most people tend to tire more easily when they have a cold, but they can continue to do things like go to work or pick up a bit around the house. For me, it makes just getting out of bed a massive task. The stiffness in my legs is intense and makes them feel like they weigh 100 lbs a piece. Walking becomes more difficult because my legs feel like they are dragging through heavy cement and my balance is reduced even more than normal.
Being sick with a common cold suck for everyone, but it has much more of an impact on those of us with impaired bodies. From increased pain and exacerbation spasticity it is not just a simple cold. The only way to stop it is prevention. I do my part by washing my hands frequently, staying away from those who appear to be ill, take my supplements drink plenty of water and get plenty of rest. Now all we need is for others to do their part-Stay home when you are sick and do not share your germs.
It is not always easy to stay positive amid dealing with life. Everyone has
a story that is running through their head. We all have things about ourselves that we are not happy with and want to change. Maybe it is losing a few pounds or asking for that raise. For me, it is regaining my ability to walk with balance, lowering my pain without increasing opioid medications, and being able to take care of my family. It really can be overwhelming, but I believe finding the positives in the people and things around you can help make the situation feel brighter.
One of the hardest things I deal with is pain. Chronic pain interferes with
life on so many levels. It zaps your joy and energy. Physically it makes it
hard to want to move let alone get out and do any physical activity. For me,
the sensation that my skin is being stretched to the maximum and then ripped apart is enough to drive me crazy. Then my legs decide they want to burn like you have been bit by a thousand fire ants. Dealing with this daily is unbearable at times. It causes me to feel down and sad. I have sat and cried and asked God, why does He keep allowing me to hurt? Why did He give this to me? I have cried out and told Him that I cannot take much more. It is difficult to find anything positive when you hurt, but there is so much to be thankful for.
Being chronically ill makes doing many things more difficult and scarier at
times. Just getting yourself bathed and dressed may drain you. So, the thought of going out to the grocery store or a movie is daunting. Yet, opening my eyes every day is a blessing. It means I get to have another day to enjoy my family to the best of my ability. I am no longer have the ability to run and play tag with the kids, I cannot jump on a trampoline, nor can I help in the yard much, but I can play a board game, do a puzzle, or teach my family to paint and create things, and I can certainly love them. Of course, there is so much more that I can do.
Although this may be true, it often gets lost in the frustration of living
with chronic illness and pain. For me it takes deliberate thoughts of hope and lots of conversations with God to keep me on the right track. It is so easy to see all the negatives which start bringing me down. If I continue to let the negative thoughts in, I find that my anxiety and depression creep up. Then I find that I have more difficulty controlling my pain and spasticity. This is not to say that there aren’t real reasons for increased pain and spasticity, but our minds are powerful.
Each day is an opportunity to “keep moving forward” and to seek out the positives in our lives. It may be difficult to see at times but taking the time to stop and deliberately seek out the good can help push us forward. God is with us every step of the way, even in moments when we feel alone. His hand is reached out to all of us waiting for us to grab on. Living in chronic pain can rob us of the precious moments, but we can cease the good even amidst the pain.
Every morning I wake up I am so thankful to have another day, but I know that I will have to deal with the muscle spasms and the unrelenting burning pain. I start my day at 5 a.m. with taking my cocktail of meds.: Baclofen for spasticity, Gabapentin for neuropathic pain, Oxycodone for pain, and 1:1 CBD for pain and spasticity. Throughout the day and evening, I continue to take my prescribed medications, but often at some point during my day and/or night my pain reaches a 6 or more on the pain scale. So to disrupt the pain signals being sent from my brain to my back and legs I use VR (virtual reality). I use the Oculus Go and immerse myself in VR by doing things like swimming with manatees, creating monsters, traveling, meditating or any other variety of things.
So when my pain starts to climb even after I have taken my medications., I grab my Oculus Go, put the device on, and open the program I want and begin interrupting my brain’s pain signals. In about 10 minutes, I notice that the my pain and spasms have diminished. I usually will continue to use the VR for about 45mins. to an hour . By this time my spasms have stopped and my burning is down to a 3 or 4. I can then take the device off and continue with my day or at night go to sleep. Note: At night I mostly use relaxing programs like meditation or swimming with the manatees or dolphins in Ocean Rift.
The Oculus Go is a contained unit. Meaning you do not need a phone or computer to use to use it. This is perfect for me as I use it sitting down or lying in bed because of my spinal cord injury. The more immersive the program the better. Warning: It can cause motion sickness especially the first time you use it. This briefly happened to me in a floating game I tried. I now able to use the game and have not had any further issues with feeling light-headed or dizzy. I have been using my Oculus for about 3 months. So far, I love it and it offers hope to being able to reduce my pain.