Chronic. Intimidating word isn’t it? Whenever I hear that word it gives me a mental picture of someone curled up in a hospital bed dying! However, that isn’t always the case. Chronic means “persistently for a long time or constantly recurring.” For those with long-lasting health conditions that just do not go away, life can get very discouraging.
When I woke up paralyzed in 2009, unable to feel or move anything from my upper ribs down, my arms extremely heavy and fingers slow to respond, I had entered the world of a chronic health condition. Caused by a virus, the swelling around my spinal cord had permanently damaged it. This wasn’t going away.
Nine years later, I am still here and living life from a wheelchair. There are hundreds of small things that constantly pop up as secondary conditions to paralysis and each time they do, it is an opportunity for discouragement. However, I am happy. Life is precious to me. I am still on the journey and learning each day, but may I share some things I have learned to combat discouragement and offer some practical help?
- Cling to Jesus!
I know we say it, but really DO it! I have spent many a night in fear of the future, in horrific pain, crying and having a panic attack…and I just ask Jesus to please come and hold me. I tell Him I am a scared little girl and I need my Daddy to hold me. I just pray. Do you know that most of the time I fall asleep praying? I KNOW He has rocked me to sleep comforting His girl.
- Keep your eyes on the bigger picture!
When you are in the moment of discouragement, it hogs the lens of life. Everything looks dark and gloomy. But step back. Take in the whole picture. God has been faithful; He will be again! Don’t get sucked into the emotion of now. Keep an eye on the reality of our tomorrows.
- Look for the fingerprints of God all around you!
When I see the sky, I remember how big God is, and He is in control. When I hear birds sing, I remember that He cares for the sparrows and He cares for me. When my heart is moved watching others show compassion, I remember that God is full of compassion for me! Intentionally look for ways to let life and others encourage you! Don’t look for the huge things. Look at the million little things that go on every single day. It could be a smile, a song, a hug, a call or text, a cuddly animal…anything good! Notice them. Appreciate them. Together they become huge!
- Dwell on what you can do!
There are many losses that can come with long-term issues. Grieving those losses is a natural process, however, don’t wallow in them. Instead, make a list of what you can do, or even what you can learn to do. Find your new niche and do it well. Find a sense of accomplishment that makes you still feel like a productive citizen. We all need purpose in our lives to thrive. Discover it and dwell on that!
- Quit Worrying About What Others Think
This was hard for me and took me several years to get to this place. Unless others live in your body and know what you deal with daily, their opinion of what you should or should not do cannot have much weight. My husband knows me more than anyone, and he is also the first one who will tell me his feelings. Sometimes that has been to say no to others, or to go to bed. He has also been a voice that has told me to stop pouting and to go do something. Learn who these people are in your life and give your ear to those who truly know your situation. If they do not, then ignore them.
Having just said that people don’t understand, I must also say that we DO understand. I know when I want to skip out on something and blame my disability vs. knowing that I really cannot do it without serious consequences to my health. Some of this has been learned easy, and some of this has been learned because I have failed to prioritize. A rule I live by: If I can do anything else today, then I can do this. Meaning….am I too tired to go to church on Sunday? Will I also be too tired to go out to lunch? If I am too tired for Sunday, what did I do Saturday that wore me out? Did I have to do that Saturday? Can I change my schedule to make Saturday’s lighter, so I can attend church on Sunday?
I have had to learn to look at my life a week at a time. I must look at what needs done that week, what is most important that week, and structure my week accordingly. It is imperative that I schedule rest days, or I end up in bed 2 weeks at a time. Sometimes, a certain activity will absolutely cause me a tremendous amount of pain later and the entire next day. I avoid those things like the plague if I know I need to do something the next day and need to be able to move around! Other things, with my disability, are invisible secondary things that I cannot control. If my stomach is messed up, I will need to stay home where my accessible restroom is…and quite frankly, clean clothes. To deal with all of that while out and about is extremely difficult and embarrassing. Although I may look great and feel great (except for my stomach being messed up), I cannot leave my home.
There is not a one-solution-for-all when dealing with prioritizing for your chronic health condition as we are all unique. But, I would dare to say the unifying statement for all of us is that it is VERY easy (because things are so much more difficult for us) to use our chronic health condition as an excuse when we really wouldn’t have to if we prioritized and were wiser with our planning.
- Challenge yourself each day
I was told early on, to push yourself to do one thing each day that you just do NOT feel like you can do. Some days, this is honestly just getting up, getting a shower and getting dressed! It takes all my strength and I am done. Thankfully, this is not every day! Other days, it is taking on a project with the kids, a day of work, or a day out with a friend. Regardless of what that one thing is, do it.
The hardest day of my week is always Sunday. I must get up early to get my body ready for the day, and I am already worn out by the time it is time to go to church! I am in my wheelchair chair for hours, which make my nerve pain very close to unbearable. I don’t always feel well, but so desire to be an encouragement to others! So, I play this little game with myself. I start with the hard and just try to do it. I know that at any time I truly can’t, I can stop. But I push myself to try…one little step at a time. These are my thoughts to myself:
- Get up. Literally, get yourself set up in bed. Don’t lay. Sit up. That is a job just sitting up with my morning spasticity! (Transfer into wheelchair)
- Once up, go to the bathroom (transfer to toilet) and prepare to shower (Transfer back to wheelchair from toilet, and transfer from wheelchair to shower chair)
- Take a LONG hot shower and get your body feeling better for the day. (When done, transfer from shower chair back to wheelchair)
- Get your clothes and get back on the bed to get dressed. (Transfer from wheelchair to bed) Don’t just lay there or you will go back to sleep from being so exhausted from all the transferring already! (We are now up to 6 transfers!)
- Immediately start the process of getting all your clothes on (thankfully, most of the time with help from my sweet hubby who cannot stand to watch me struggle doing this) and I gladly let him because I am beat!
- Transfer back into the wheelchair to go blow-dry my hair and put on my makeup.
- Unlock my door and let my kiddos rush in to show me how handsome and pretty they are and just hang out. This always makes my morning brighter!
- Time to go to church and roll out to my van where I transfer again from my wheelchair to my driver’s seat, drive to church, transfer from my driver’s seat to my wheelchair, and wheel in the church ready for breakfast and a smile!
- Want the truth? If I did what I “felt” like doing, or what is easy, I would have never left my bed!
This is not to say my life is so bad. This is totally my normal and I don’t think of it like “this is so awful”, but it is my reality. I just know what is important that day, and one step at a time you do the next thing you don’t always feel like doing. But would you like to know another truth?
Even though Sunday is the hardest day of my week, it is also one of the happiest!
I am encouraged by serving and doing valuable work, I am encouraged by seeing others who I know suffer and are so faithful, I am encouraged by the singing and the preaching and teaching of God’s Word, I am encouraged by the friendship and fellowship of my church family and I am encouraged that I was a part and didn’t miss out because it was “hard.”
A lesson for me is that many times what has been physically difficult has been extremely rewarding emotionally.
You must find the balance. There have been times I have had to say “no” to afternoon company because I need to go to my bed all afternoon and rest so that I can go to the evening service. There are times, like this past Sunday, that I wondered if I would even be able to go Sunday evening. I woke up with a red pressure area on my tailbone that can quickly turn into a pressure sore. I went to church that morning with both Jimmy and I worrying it might get worse at church. I came home and stayed in bed all afternoon and by evening, it was looking better. Had it not looked better, I would have stayed home in bed and not went to church. Not because I felt bad, but to keep me from getting a pressure sore that could keep me in bed for months at a time!
The point of all this is to say that you know what your hard is. You know what you need to do to challenge yourself a bit more. We are always easy on ourselves. It is called self-preservation! However, when a long-lasting condition is part of your life, you can’t always live on easy. You seek the necessary and find the strength to push yourself from easy to necessary. It is a challenge we need to have for ourselves.
I have belabored this point, but I feel it is SO important for those of us who have health challenges that do not go away. This is our life, so we must fight ourselves with this very point, or it is just too easy to become lazy which leads to discouragement which leads to depression and it is a vicious cycle that is hard to get out of.
Chronic health conditions do not have to mean that life is over. It doesn’t have to mean you are dying. It means that life is not as it once was, and you must think through many things to deal with your own issues.
For most things, the quality of our lives is dependent on the quality of our choices. Therefore, we must choose wisely to help us emotionally and physically.
If you have thoughts to add, please comment below and let me read them! I always love learning what has helped others.