Each day we open our eyes is another opportunity to keep moving forward. Even the smallest of steps is a step forward. When dealing with chronic illness some days feel like you take one step forward and 5 steps back. Between dealing with the pain, the medications, and daily life it can be overwhelming.
Yet, the smallest of steps is still moving in the right direction. Just sitting up for a few minutes at a time is a start. Remembering to allow ourselves to have down time is important. Just because one day is bad doesn’t mean all days will be bad. I know from my own experience that sometimes I may only one day where my pain is at a 6 to an 8 most of the day, while at other times it is 4 to7 days in a row. Making it difficult to see end through it all. During these times I pray a lot and make sure I allow myself time to recover. Focusing on every little positive step allows me to remember that any movement is movement forward. It is important to flood our brains with the positives instead of negatives because as humans we tend to focus on the negative.
Life can be full of negative moments, but there are many more positive ones. So, if we focus on those we will find ourselves more able to deal with our issues allowing us to keep moving forward and overcome so much more. Every day we have the choice to allow the negative moments to take over or to focus on the blessings we are given every day.
All we have to do is open our eyes and we can see all things He has created. If He created us and all things that surround us than how can we doubt that anything is impossible?
Have faith and hope because “Where there is faith, and there is hope, Miracles Transpire. ” No matter where we are or what circumstances we gave God is with us. All we have to do is ask Him. He loves us unconditionally and wants us to depend on Him.
Each morning I awake in pain facing the fact that I am disabled. Yet, I know that through every breath God is by my side. Even on the days I can barely get out of bed and requiring me to take extra medication just to move. He keeps me moving forward and helps me push through it all. Because of Him I am walking again instead of being in a wheelchair. Because of Him I am continuing to improve even almost 4 years out. They maybe baby steps but they are steps. Don’t give up hope because each day we are given is another day for a miracle to happen.
As someone who deals with chronic pain daily there are just some things, I wish people would stop saying to me and to others who suffer from chronic pain due to illnesses such as Spinal Cord Injury, Chiari Malformation, Fibromyalgia, MS, and Lupus to name a few. Me and my fellow suffers realize that people just want to be helpful and offer their opinions and/or advice to try to lessen the pain or help us find other ways to cope and deal with the pain. Rest assured that most of us that deal with chronic illness and pain daily want nothing more for the pain, fatigue, and other symptoms to just go away even if it is just for the moment.
So here are some things that others would not say to me or to my fellow suffers:
1) Your pain really is not that bad. Well, let me say for all of us who suffer from any chronic painful illness, IT IS REAL! The pain and fatigue are real. The sleepless nights are real. The intensity may vary during the day, but if we were not taking medication on a regular basis most of us would become non-functional and have pain of 10+.
2) We all get aches and pains as we get older. Yes, we all to get more aches and pains, but the pain most of us battling chronic illness have is intensified. And for a great many of us we begin to experience pain at an age when we should not hurt.
3) If you sleep more you will feel better. Well, sleep is important, but unfortunately the ability stay asleep is a challenge. Often even after a full night of sleep for people with SCI, nerve damage, Lupus, and Fibromyalgia we still do not awake refreshed because the body does not get into the deepest stage of sleep. Therefore, even if you manage to stay asleep for several hours, you are most likely not going to awaken feeling refreshed. This is the reason that sleep aids are often prescribed. And even then, they do not always help.
4) You need to get more exercise. Most suffers have treatment plans which include exercise, but it must be approached slowly and carefully to avoid triggering a flare. Currently, I exercise at least 1 hr. at least 4 times per week. When my pain remains low, I take advantage of it and exercise more. But we must also listen to our bodies and allow for down time even if it takes more than one day to recuperate. Some days just rolling over hurts.
5) You do not look sick. If we let ourselves go and really showed how bad we feel, then people would not want to be around us. Yet, when we try to focus on feeling better and put on a “brave face” then we do not look sick. I know that for me personally when I do my hair and make-up I tend to feel better even if I must rest afterwards. Remember, sickness has many different levels and faces.
People mean well. Most often the comment comes from a place of genuine caring and they just want to help. This note is for them. Please be considerate and think before you speak. It is not easy for those of us with living with illnesses that cause chronic pain. It can also prevent an extremely negative response for the person with the illness. People tend to be a bit grumpy when they do not feel at their best. May God bless us all as we go on this journey together.
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.
Acts 20:3535In everything I did, I showed you that by this kind of hard work we must help the weak, remembering the words the LORD Jesus himself said: ‘It is more blessed to give than to receive.’ “
We all the opportunity to give to others each day and often several times a day. It could be as simple as a smile, opening a door for someone, allowing someone to go in front of you in the checkout line, or even a phone call. There are so ways to give. Yet, many of us get so caught up in own lives we do not even think about giving. Many years ago, I attended a life changing weekend where the motto, “Givers gain and takers loose,” was the theme. We learned the simple act of a hug could change our perspective when we learn to give as well as receive.
During these times where so many people have been impacted monetarily, emotionally, and physically giving is crucial. It may change a depressed, overwhelmed, or angry persons demeanor and outlook. One act of giving can turn a bad day into a great day, it means making people happier and more productive. It also often causes the giver to have more joy as well.
The opposite is true of takers. They are often selfish and draining on their relationship with others. They are the ones that always want things their way. They tend to go from zero to angry in seconds. They sometimes throw tantrums even as adults. They often give begrudgingly, expect something in return, or because they are wanting to appear like the they are givers. They are only happy when things are going their way, or they are doing what they want to do. But as soon as they are told “No” or are alone their happiness fades and they become lonely, sad and depression and anger creep in. Takers also always blame others for things. It is never their fault no matter what. The often cannot say, “I am sorry.”
Though this may be true of takers, the opposite is true of givers. By watching others smile when they receive the giver reaps the benefits of a happy heart making them more joyful and productive. Have you ever started out having a bad day only to have it change because someone did something unexpected which changed your perspective? When we give to others without expecting something return, both parties gain. Just taking 5 minutes out of your day can change someone else’s outlook as well as your own. We can all live better more blessed lives when we give freely to each other