Defeating the bridge! Three weeks ago when staying here I could not walk over the bridge without my husband helping me. With practice, lots of prayer, walking and exercise I have built strength and now I can get over the bridge on my own using my LifeGlider.
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.
It has been difficult to get motivated to write or do much of anything being that I have been more pain than normal. I am having a flare up that has caused by pain to remain high despite medications. My spasticity has also been high making it very difficult to walk and stand. I do my best to stay positive and not get grumpy or angry. Unfortunately, no matter how hard I work at it the guilt mixed with the pain wear me down and I do snap at those around me. Of course, this causes even more guilt. Learning to let the guilt go is hard but necessary. We cannot take responsibly for things we cannot control. We must let go of the guilt and focus on the things we can control.
Flare ups for anyone living with chronic pain, be it from a SCI or an illness like Fibromyalgia, cause not only physical pain, but mental as well. For me it is difficult because it means not being able to take care of my family the way I normally do. It means not being able to do something I love, cook a meal for my family. Heck just getting up, showered, and dressed are major feats. But the physical limitations often lead to feelings of guilt and inadequacy. It is easy to see all the negatives-I can’t make the bed, I can’t get the laundry done, I can’t pick up around the house, I can’t cook a meal, and I can’t…
All these negatives creep in over time, but it is important to change that running line in your head to a more positive one and realize that you really do have an illness. When anyone of us get a cold or the flu we take medications to help and allow ourselves to rest. So why is it that we cannot do this when we have a flare up of symptoms? Admitting that I really do have an ongoing illness continues to be difficult, but through prayer and learning to give it to God I have been able to continue to move forward. Yes, I really do struggle with admitting I have a chronic illness, but my body reminds me every day. I am learning to change the” you’re a failure because you can’t… “story into look at what you are overcoming and continuing to do.
It takes constant reframing of my thoughts. It is so easy to see and hear the negatives. It is important to recognize and deal with what you are feeling.Hiding and pushing your feelings aside only keeps them festering and making the story you hear in your head seem far worse that it really is. By reframing the negative thoughts and feelings we can continue to keep moving forward. For example, When those around you who believe they are being helpful constantly say things like- “Your standing with your knees locked “followed by “you’re not picking your feet up” or ”Get your feet under you , you are leaning to far forward.” And of course, I can feel the issues because my balance is off, my legs buckle and just standing is difficult. Instead of focusing on the negative I do my best to reframe my thoughts to something more like, “Look at you, you’re standing,” or “Wow, you just walked up hill and it was easy.”
It is perfectly okay to Give yourself a pass. Again, understand and realize that you are not choosing to do something. All of us that live with chronic pain/illness must accept that our bodies don’t care if we have plans. Our bodies are going to do what ever they want. So, take the time to rest and recover so that there will be better days ahead.
Be sure to treat yourself with kindness. Reframing your negative thoughts into positive ones helps tell a better story which will impact our emotional state. Remember our brain is powerful and it impacts what our bodies physically feel. Higher stress levels means more pain and a reduction in our ability to deal with the pain.
Reminding yourself and finding the things you can do is also of value. Pain often interrupts our plans, but instead of getting angry and down focus on the things that you have accomplished during the day. We cannot fix the past, but we can adjust and make changes to our future. Find things like painting, gardening, or other hobby to get out and meet others or to relax.
Every step I take is a miracle that God has given me, and it is so easy to lose sight of how far I have come. It is easy to let the negative thoughts and guilt in and start believing them. This affects my mood and my pain levels. Learning to reframe my thoughts, pushing all the yuck out helps reduce my pain levels, makes for a happier day to day life, and makes my mood much better. Stop feeling guilty about the things you cannot control because this only stops you from moving forward. I encourage you to let it go.
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.
Me on my Oculus Go