Living with chronic illness often means learning to navigate the daily pain and stiffness changes that can be exacerbated by fluctuation in temperature and sometimes food. It means being aware of what your body is always telling you and doing something about it before it is too late. For example, when temperatures rise into the upper 80’s and above, I must be extra diligent with drinking water to stay hydrated, doing my best to stay in cool shaded or air condition places, and watching for signs my body is may be becoming over-heated. Because of my SCI and Chiari Malformation my body does not sweat normally, I only sweat shoulders up, which means my body cannot cool itself off properly. So, whether I am relaxing in a pool or indoors I must make sure that I do not over-exert and get overheated. In cold weather I must bundle up but make sure I do not become too warm. .Becoming overheated or getting too cold can mean increased headaches, more allodynia which in turns triggers spasms in my back, across my tummy, and down my legs. This usually means having to lay around for the next day or two and/or sometimes longer. So, on high pain days what can you do?
Give yourself permission to recover and accept help
It is not always easy to have to admit that your body is rebelling and that the only thing you can do is find a somewhat comfortable position, take your medication, and just rest. I know for me this is difficult. As a wife, mother, and grandmother I am supposed to be the one that takes care of everyone else not the other way around. Not being able to get up and take care of my family makes me feel down. I hate feeling like I am letting those around me down. But the reality is that our family and friends understand. They only want you to get better. It is perfectly okay to ask for and accept help. Our bodies are telling us Stop! It is time to rest and recover.
Distract yourself from the pain
We are all different and like different things so finds what works best. For me sometimes it is putting on my VR helmet and immersing myself in a game, go swimming with the dolphins in Ocean Rift or use the meditation application. I have used this method on many occasions and find that my pain will drop from an 8+ to 5 in about 15 minutes. After about 45 mins. I can remove the mask and relax some.
Another way to distract myself is find a sitcom or movie to watch. With all the different services out there like Netflix, Hulu, and Fire Tv it is impossible not to find something to watch. I often find comedies, old reruns of I Love Lucy, or a great movie on the hallmark channel often help distract my mind from focusing on the pain as much. Look, when your body revolts find ways to make the best of it. Whether you are engrossed in a game or coloring do what helps you distract yourself from the pain.
Remember this is temporary
When our bodies misbehave it is easy to fall in the trap of beating ourselves up. It is extremely easy to lose sight of the fact this is only a temporary setback. Often, especially when things seem to be progressing, a minor setback like this seems much more than it really is. It can feel like this is going to last forever and then we start playing the “What if game.” What if I do not improve? What if this means I must start increasing my medications? What if the medications start making more lethargic? And, so on and so on. Our minds are powerful and if we allow the negative thoughts in, we risk increasing our pain and discomfort. This usually leads to longer recovery times. It would benefit us to remember this is only a hiccup on journey.
Our bodies are complex and sometimes temperamental. Living with high levels of pain is difficult and can drain our ability to cope and cause us to lose hope. It is important to remember that these setbacks are just temporary, and our journey will resume shortly. It is okay to take the time to recover and accept help. This does not mean that this is going to be how things are from here on out. Let us do our best to allow ourselves time reset and recover.
Dear Lord, thank you for being the light that guides me through the storms. You renew my faith, hope, and my spirit. Help me to always find You even the most difficult of storms and give you praise through it all.
A few months ago, I began to do Yoga twice a week to help with flexibility, build core strength, and balance. Because of my injuries and surgeries my muscles atrophied, I lost proprioception and balance. I worked out in a gym setting with a trainer for about 9 mos. prior to starting yoga. Strength and endurance training were and are important, but my balance and proprioception was just inching along and for me to regain the ability to walk without a walker I decided to try a different approach.
In just a few short months there is marked improvement. I am much more steady/balanced. My walking is also improving. Maybe in another 5 months I will be walking without a walker.
This was in early Feb. 2020. I am barely able to lift my rt leg off the ground. I am also very unsteady. This exercise is quite difficult.
This was the same day in Feb. I am again unsteady and lifting either leg is difficult.
This was May 3, 2020. Notice the improvement. There is more control, both legs raise higher and my core strength is much better.
This was back in Dec. 2019. I was very unsteady. My walking is very jerky.
My walking has improved since Dec. I am more balanced and not as choppy. Still needs work, but it is coming along. Who knows what it will be like in another 5 mos.
During these trying times we all need something to hope for. I hope by sharing that I can encourage others to keep pushing and to keep moving forward even if they are baby steps. If I had taken what the doctors told me I would be in a wheelchair. I believe I have a purpose and that is to encourage and share God’s message with others. Regardless what we are facing God is by our side and because He is with us there is nothing, we can’t get through nor accomplish. We are not our disability, injury, and/or our short comings. We are strong and resilient, and we all have a better story to tell.
Recently I decided that it was time to let my sewing machine go. Besides, it
has been just sitting there collecting dust for over three years. Before I had surgery, I was already experiencing diminished feeling in my legs and feet. I could no longer use the foot peddle, but I held out hope that someday especially aftermy surgery I would be back to making things. Well, that dream disappeared that fateful day when I got out of bed and lost all feeling from the waist down. But in the back of my mind I was still hopeful, as I believe that God gives usgifts and He wants us to pursue them.
So, before I listed my almost new sewing machine for sale, I decided to give
sewing and using the foot peddle one more try. Besides, I had promised my 9 years old grandson I would make him a blanket. He had picked out a soft greenand tan camouflage material with a dark green edging about two months ago with the understanding that it may be a terribly slow process especially if I had to make it by hand. I had resigned myself to having to sew the blanket by hand, but this is what happened.
Well, looks like I will be keeping my sewing machine and continue creating. Although I doubted myself,God was there to show me that He is there every step of the way . He has restored some of my confidence which had faded in the midst of my injury. God wants nothing more than to restore us and to give us happiness. We can choose to see all the negatives or we can let the past be the past and keep moving forward making new paths. We can always tell a better story.