Tag Archive | SCI

Smile even when you think you can’ t

During the times when the news is negative, and people fail to treat each other with love and respect we can still live with joy and smile. Often my days are long, and my nights are short and restless because my pain is all over the place thanks to living with an Incomplete Spinal Cord Injury and Chiari Malformation, but I still have joy and can smile because God has promised that I will be healed and  will succeed. He gives me each day to enjoy all the little moments even through the pain.

I pray of ten for total healing. A healing that will take the muscle spasms away, the leg electrical zaps, the pain of 6+ that I fight several times a day that include allodynia on most of my torso. and one that will give me the total use of my legs. Although that t day has not come yet I know it will. But God has performed many great things in my life. He has taken me out of a wheelchair and given me the ability to stand and walk with a walker and at times without one. He has allowed me to continue to use my hands which allow me to paint, draw, take photos, but most of to hug all those around me so that I may spread the joy and love.

No matter what life throws at us there is always something to be thankful for. Even when life feels like we are walking through the mud with extra weight on our backs we can still smile and have joy because the little things matter. The smiles we share, the hugs we give to our family, the elbow bumps we share with our friends and/or co-workers. If we focus on the good the and keep moving forward, we will soon find ourselves on the other side of all the bad. So, smile even when you don’t believe you can and start telling a better story. His promise is real.

His promise is unchanging

Your promise revives me; it comforts me in all my troubles.
Psalm 119:50 (NLT)

Some days are great and it easy to feel the energy and build on it. Those day are when we do things like get outside and do a little gardening or step up our workouts. Yet on the days when our body hurts and feels sluggish it becomes difficult to see the positives. But God’s promise to walk with us, to love us and to get us through brings life and hope back to us even when our pain is at an 7+ and our legs feel like they have weights on them as we walk through mud. Regardless of what is going on His promise remains unchanging.
Lately, I have had some tough days where all I can do is take my meds and rest. I have always been an active person who would much rather be outside doing something rather than to be a couch/bed potato. But I have had to learn that with an Incomplete Spinal Cord Injury and Chiari Malformation that it is okay to take time to let my body rest and heal. So, on those day I read, draw or binge watch something on Netflix or Hulu. Often it is a combination of all those things. All the while remembering that God is with me and not let the negative thoughts creep in.
Once the negative thoughts start running through it makes it much harder to remain hopeful. Then the pain becomes overwhelming and causes many of us to fall into the “what if” stage. For example, what if there is a major earthquake, how am I going to get out, or what if this time I do not improve, and my symptoms just keep getting worse? Silly thoughts that the enemy loves to put into our head. Of course, we have a choice, we can keep going down this negative and dark path or we can STOP, say a prayer and ask God to help us control our thoughts and then begin thinking about all the good things that tomorrow will bring. Now, there are times when tomorrow repeats the same pain, but if we keep looking forward and stay hopeful most of the time the pain gets better and we are off to our next project or adventure.
If we stay hopeful, we will keep moving forward even if we take little steps. In time we will look back and realize how far we have really come. God’s promise gives us comfort in those times of difficulty and gives us hope to hold on and let Him carry us through. Stay strong and allow the good thoughts power you instead of letting the bad ones drain you. God will never break His promise. He will always comfort us and bring us through.

Things I sometime think about…

Becoming disabled at the age of 52 was not what I had planned for my life. I am supposed to be enjoying life with my husband, traveling, having fun with my children and grandchildren not wondering how much pain I going to be in or how many spasms am I going to have to endure. Now I am learning to live with pain at 5+ on the pain scale on most days as well as having to take way more medications than any normal person and having to use assistive devices. Yes, these things make life more difficult, but learning to navigate in public places as well as with the public is even more difficult.

Just going to any local grocery store, pharmacy, or restaurant possess challenges that beg the questions like: why must they all have industrial mats at the entry year around? or Why are the handicap bathroom stalls are at the back of the bathroom? Should they not be at the first stall where people with disabilities can get them  fast and easier? or Why do most places make the doors to enter the bathroom so heavy that even a person with no disability has difficulty opening ?

Every time I enter a building, I must be aware as there is often a major trip hazard called rugs/mats. This is especially true when you are using a walker because as you “glide over them” they catch the wheels and lift causing a major trip hazard. When the mat lift you then have to stop, lift up your walker so you can dislodge the mat stuck under the back wheels or skid plate, and then set it back down before walking on. Well, if you are using a walker chances are you are already unstable like me. Now, I must try to stand balanced while lift and setting down my walker. Does not sound very safe to me.

Next, why is it that in most places the handicapped restroom is the very last stall, there is usually only one stall, and just entering the restroom is a chore? Most people living with a deficit already have difficulty so making the door to enter so heavy that even someone who is healthy and strong can barely open it is just uncalled for. Living with a SCI and Chiari Malformation does not just cause added pain but also creates bowl and bladder issues. Often when the urge hits you must go right now. So, struggling to open the door, only to find out you have walk even further then abled body people and then there is only one stall which is now occupied by an able body person.  Women tend to use these stalls when they have small children-So why not use the family restrooms instead? Granted in some locations they put the changing table for babies in the only stall available for handicap which complicates matters some (not sure if this is true in the men’s restroom).  It seems strange to people when you have a grown adult doing the pee-pee dance because you are doing everything you can to not have an accident. It is a bit embarrassing to be an adult that has bathroom accidents, but it happens.

Having illnesses like Chiari, MS, SCI and many others means dealing with not only the everyday pain and discomfort it also means learning to deal with bowl and bladder problems. There are days where everything works like it is supposed to and then in the blink of an eye you are dealing with urgency and inability to control your bowel and/or bladder. It is already difficult having to deal with chronic pain and instability but then we also must navigate in a world that is not made for people with disabilities. So, when you are out, I would ask others to be a bit more considerate, avoid using the only handicapped bathroom if possible, and pay attention to your surroundings. You can help those of us with a deficit by being proactive and watching for hazards and bring them to managements awareness just like I do. Even with the obstacles, I still am grateful for every day I have, and I feel truly blessed. I will keep moving forward and do my best to tell a better story as I know that God has a plan for me.

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Thankful

Every breath and step I take, and every hurdle I conquer is because of Him. Facing each day with Him means nothing is too big to overcome because even when I think I am failing He is picking up and carrying me to the finish line.

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.