Each morning I wake up is another day on my crazy journey, but most
importantly it is a day to “keep moving forward.” 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. This leads
to more difficulty controlling my pain and spasticity. This is not to say that
there aren’t real reasons for my increased pain and spasticity, but our minds
are powerful. For example, I know that
when I am over-tired or catching a cold, the spasticity in my legs is much
worse, making it hard to walk because my legs feel like there are 20 lbs.
weights strapped to each ankle and I am walking through thick mud. Let’s face
it, when dealing with a spinal cord injury (SCI) you never know what weird
thing your body is going to do next.
I have found that when my mental acuity is down it is much easier to get stressed and overwhelmed. Getting a good night’s sleep is crucial, but often illusive. For me there are several reasons. Pain being one, other times it is that I cannot regulate my body temperature, and/or it maybe I just cannot get comfortable. I eventually fall asleep but staying asleep it also difficult at times. This is extremely frustrating. I use meditation and prayer to help relax me so I can drift off to sleep. Prayer continues to help me in all aspects of my life.
Sometimes days are just crappie and other days are great even amidst the
spasms and pain. Lately, I feel truly blessed because I have had some pretty
good days. Yes, my pain has been out of control some nights, but I have still been
able to the gym and work out on most days, take care of my family, and have
spent time with my mom, my 4 amazing grandchildren, and my smart and funny nephew
who calls me grandma. Being able to take the kids back to school shopping or just
hang out and watch them swim helps put a smile on my face even when I hurt. I
believe that God is watching over all of us and He sends little gifts that get
When I arrived at the gym Tuesday, I did not think I would be able to do much. Unfortunately, I had a rough night. My pain was at a 7-8 on the pain scale. The skin on my back felt like it was stretched to capacity and ripping open. I used my VR for about 30 mins. My pain was still fairly high so I also took extra meds and prayed. Eventually, I drifted off to sleep. When I woke up on Tuesday, my body was weak and tired. I got myself ready and headed to the gym any ways. I do my best to never miss a session because I know the only way can improve my balance and coordination is by continuing to work hard.
I was able to do 3 sets of 15.The first was I did not need my trainers assistance.
Another first-no assistance needed. My form is improving as well.
I was pleasantly surprised as I went through my workout. I am thankful for the strength God continues to give me each day. The hard work is beginning to pay off. My proprioception, balance, and feeling in my legs have all improved. This means that new neuropathways have been created. My motto “Keep moving forward.” helps to keep me focused on the prize, walking with a cane or no assistive devices.
As I go through this journey, I have to remind myself of where I have come from. Two years ago I was in a hospital recovering from 4th surgery in less than a month. I could not feel much below the waist and I could barely take 20 steps without being totally exhausted. My pain was much higher, and I had to take higher doses of medications on a daily basis. Through a lot of physical therapy and working out on my own I am making progress.
As you can see in the videos, I still have difficulty and need assistance to complete some of the exercises. But does that really matter? No, the important part is that I am at the gym and I am doing things I never thought possible. Our bodies are amazing, and I truly believe that as I exercise, I am helping to create new neural pathways
My Rt ankle and leg/glute continue to give me difficulties. Even with my foot strapped in my foot wants to drop forward. My knee also wants to turn in.
My left leg/glute is stronger, but still requires my foot to be strapped in.
My knees continue to have the problem of hyperextending. This is why I do not straighten my legs completely.
Exercises that require me to know where my leg are when I am not looking at them (proprioception) are super challenging and often require my trainer to assist me. Although this true, there have been vast improvements like; I can walk behind my walker or a shopping cart without having to look at my feet continually, I can stand and give someone a hug without falling over, I can stand and cook a meal without having to stop and look at my feet every 10 to 15 secs., and I am beginning to be able to take a few steps without using any devices. Pain or no pain, I am grateful for every day I am given. I have been blessed with an amazing family who stand by me each and very day. It is my duty to Keep Moving Fortward!.
There are so many old saying that pop in and out of my head almost on a daily basis. Things like “treat others the way you want to be treated” or “remember you never know what the other person may be going through”, or my favorite “Love one another as I have loved you.” As I navigate life with the added pain of being disabled, it is appalling that people have to be so nasty to each other instead of showing each other love and compassion. Don’t get me wrong there are still some very kind people out there, but lately I have had my fill of mean people.
Recently on one of my ventures out, I pulled into the handicapped parking that was available. Before I could get out of the car an elderly couple approached the car and told me that I needed to move. “You’re young and can walk, this is for people who need it. People like you who take their parent’s car and then park close because they are to lazy to walk are disgusting.” I proceeded to open my car door, get out and side step to the back door and retrieved my walker. The look on their faces was priceless. No apology they just stomped off. I don’t think they would have been to happy if I treated them the way they had just treated me.
This was not the first time I encounter this type of behavior. I have been honked at as I am crossing the street because I am going to slow. While in the grocery store people get annoyed when I am moving to slow as I walk behind the basket. As they have passed me I have gotten comments like, “It’s about time” or “If your going to be that slow use an electric cart.” That is not showing love or compassion for one another.
It really is upsetting and sad that people cannot treat each other with a little bit of compassion. When you see someone struggling to open a door into a business,why not stop and help them instead of continuing to play on your phone? or When you are at busy food establishment and you see someone with a walker or crutches why not make sure they have a place to sit while they wait? Things that are so simple seem to be difficult for people these days.
Where has all the compassion and love gone? I am not sure, but I know the only thing I can control is me and my behavior. So for me I choose to do my best to be compassionate and loving to others. Maybe by continuing to show positive actions others will be reminded and begin to join in. Loving your neighbor and being compassionate towards others may be just what this crazy world needs to get back on track.
My gym day was a bit different on Tuesday, tough but amazing. I started out doing some of my normal exercises, abs, seated leg press, and seated calf raises. What came next surprised me. First, I did lunges and then I was able to do deep bend squats. I only did two sets of 20 each, and then ended with walking on the treadmill. I never thought I would be able to lunges or deep squats because of my legs are still wobbly and are definitely not as strong as they use to be.
Not easy, but definatley will keep working on these!
Tired but so worth it!
As you can see I am still wobbly. I know with continued work my technique will improve as well as my strength. There is a negative to this and that is I often suffer more spasms and burning the night after as well as often into the next day. Over time I have noticed that the extra discomfort has deminished. I also have to remind myself that sometimes I just have bad days regardless what I do.
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.
Today June 18th, 2019 I arrived at the gym feeling tired and hurting at a 5. I chose to head to the gym regardless of the pain because I knew that I had to push myself. Please note that I do have days where my pain which is caused by Allodynia and spasms is so elevated that I can barely move let alone drive. Gratefully, today was not one of those days. I do find that exercise and moving around can aid in diminishing my pain. By the time I left the gym my pain was down to a 4.
Todays session was balance training. Because I lost my proprioception, my balance, also went out the window. I have been working for the past two years to regain it. Developing new neuro pathways is essential for me. You see, our bodies are amazing structures that even when it is damaged it looks for ways to rebuild itself. I have to really concentrate on every movement as well as noting what I am feeling or not feeling as each exercise is performed.
Squats while balancing on the Bosu ball.
Balanced on the Bosu ball for 60 seconds. I remember the days that I could not balance for more than 12 seconds.
When I am not in the gym I workout at home. I get down on the ground and crawl on my hands and knees twice a day. I also put on 5 lbs. ankle weights and walk around my house for at least 30mins. practicing to lift my legs as high as I can get them. Often it is not very high, but I know every little bit helps. I also do a lot of stretching and eventually I plan on joining a yoga class. Right now getting up and down off the floor is still difficult and I often look like someone learning to walk on stilts.
Each session is different and challenging. Leaving the gym today I felt accomplished and renewed. I saw the progress I am making. Each day God gives me is a day to show Him that his gift is not being wasted. Because I have hope and faith in what God can do I cannot give up. A very wise friend of mind said, ” Speak to your legs daily and tell them they are healed. God , is healing you right now.” From that day on and I have done my best to remind my legs that they are healed and that they work. God is good!