Tag Archive | no more wheelchair

I will continue to believe

It is easy to lose hope and find all the things I still cannot do. Waking up every day in pain doesn’t help. Almost two years ago I had a very dear friend and pastor lay hands on me. He told me that my legs were already being healed and to believe. So, although it is easy to fall into the negativity trap I have continued to believe and have hope.

A few days ago, my husband and I went on a walk while staying at the beach and using my LifeGlider. I have really missed being able to do things like jumping, dancing, and running. I decided to try running. Now this is more like a super-fast walk, but I can say I am on my way. I still have a way to go, but God has brought me from no feeling from the waist down and the inability to walk to regaining some feeling and standing to walking and now almost running.

Although it is difficult to sometimes see the progress and healing, there are times when God allows us to see and feel it. Never give up hope. Have faith because answers our prayers on His time. I refuse to give up and will do my best to keep moving forward telling a better story.

Working to run again. It will happen with pratice and believing in what God has done.

Overcoming the bridge

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.

The lies we tell ourselves

Learning to live with life changing disability and /or illness is difficult enough, but we often fall into to the trap of not truly being able to see the truth about ourselves. We often think of ourselves in a diminished capacity with various limitations instead of all the positives that we have to offer or all the progress we have made. We tend to allow the pain and our weaknesses to tell the story instead of looking at how much we can do and enjoy. This can often to lead to further separation, anxiety, and depression, but there is always hope. We are the worst narrators of our own lives. Instead of the positives we tend to focus on the negatives. We see what we cannot do instead of what wecan, what we are learning to do and what we have already accomplished. When living with chronic pain and/or injuries it makes seeing the positives even harder to see because we have so many bad days making it feel like we are never going to improve. On the high pain days many face barely being able to move, leaving us having to take extra medication which may cause higher sedation making it hard to do much of anything. Often this is when the guilt sets in. At this point the “shoulds” start. I should be working out, practicing my walking, helping pick up the house, etc. While it is okay for us to give ourselves the ability to rest and recover, we often do not. For example, when my pain gets above a 5, I find it extremely difficult to concentrate on anything except the pain. I often use my VR helmet to gain better control while waiting for the extra pain medication to take effect. During this time, I frequently find myself beating myself up. I tell myself things like, your letting everyone down because you’re not working hard enough, stop being lazy and push through it because you have chores to do, and asking myself questions like what is going to happen if your pain stays high or if the medication doesn’t work? None of these statements or questions has ever happened but my mind tends to immediately focus on the negative/lies. Even on days when all is going well, the negative thoughts seem to creep in at times. I continue to do yoga twice a week with an instructor virtually, for example. My progress has been slow or at least much slower than I like.  This has made it easy for me to focus on the lies such as, you are not getting it, you are not strong enough to do this, and you are disabled. We all have things we excel at and things that take work. It is easy to focus on the negatives/lies we tell ourselves, but learning see things from our  family, friends, therapists, instructors, and doctors is crucial as they see the truth and the progress. It helps us refocus and to keep pushing forward. It aids us in recognizing all the progress we have made and how strong we really are. But our family, friends, and others are not the only truth tellers. Regardless of what we have heard, have had planted in our minds about who we are, what we are worth, or what others think of us. He does not see us as disabled, less than, or unworthy. God says we are loved, wanted, valuable, secure, beautiful, and called to a purpose only we can fulfill. Because He loves us, He will meet us wherever we are at. In Christ there is hope. This hope allows us to break free from our disbeliefs and internal struggles that seem to have no solutions.  Christ is there to catch us and refine us making us whole regardless of where we are today.

Little steps

Yoga continues to be a must for continued progress in regaining more stability. Because without proprioception and balance just standing is difficult. Each day continues to bring challenges whether it is high pain, increased spasticity, or both. Yoga helps with reducing spasticity through stretching while reducing pain through breathing and relaxation. There are times on high pain days where all I can do is rest, but whenever possible taking time to do at least 30m mins. of yoga seems to help me to continue to progress. 

When I first started I could barely lift my leg/legs and had to hold on with both hands. My body is gradually regaining more balance and proprioception allowing me to tell where my leg/legs are in space. This is crucial for walking.

Being able to balance and lift my leg behind while holding for 3 full breaths is such an improvement. I can feel my leg and ankle adjusting while I hold the position. This is also being done without engaging the breaks on my walker making use my core.

As you can see, I can elevate one leg high than the other. Because of the loss of proprioception and balance on the left side of my body it is much more difficult to engage fully.

Yoga continues to be a must for continued progress in regaining more stability. Because without proprioception and balance just standing is difficult. Each day continues to bring challenges whether it is high pain, increased spasticity, or both. Yoga helps with reducing spasticity through stretching while reducing pain through breathing and relaxation. There are times on high pain days where all I can do is rest, but whenever possible taking time to do at least 30m mins. of yoga seems to help me to continue to progress.  I am so thankful for all God has brought me through over the past few years. All glory belongs to Him!

 

 

High pain days, what can you do?

pain

 

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.