Have you ever backed out of doing something you love because the cost was too high a price to pay? Have you ever lost friends because you canceled doing something with them one too many times? Have you ever felt like a loser or worthless because you can’t do what you once did without a second thought? Have you answered “yes” to any of these questions? If you have, you are not alone. There are others out there who have answered in the affirmative as well. I have said “yes” to all of them as well.
There are many people who live with chronic illness and the price we pay for each excursion in our life costs us in exhaustion, pain, and flare-ups. What once brought us joy only brings us pain. It brings us a sense of embarrassment because we just don’t have the physical or mental capacity to handle life. We start out the day with high hopes that today we might not pay for having fun, enjoying time spent with family and friends. That we won’t decide that we have been feeling pretty good for awhile so maybe we can go do something physical without having to call the day short because the pain becomes unbearable or our mind has decided to send the wrong warnings to our body and fight or flight has been engaged.
We decide to go spend time with friends at an event and just the small amount of exertion to our muscles cause our pain receptors to begin firing. Soon just taking another step leaves us in tears of pain and frustration. We wonder what did we do to not deserve to have a little enjoyment from life? We go home in tears because it hurts so bad, and exhaustion is dragging you down. It takes every last ounce of energy you have just to make it to a comfortable spot to land because it is going to be a moment or two or three before you can find the impetus to rise once more.
I find myself planning the simplest outings to cause the least amount of aggravation to my body. I make sure I go to crowded places when there is the least chance of my Panic/Anxiety disorder to be triggered. Each step metered so that my muscles don’t have a reason to cramp or spasm. I pray that I will still feel the ground under my feet each step I take. I remember before my body turned against me of time spent with friends going to social events, going out shoot pool and spend a relaxing evening just being together. Now I have to figure in the cost of such activities. On how much pain I have been in the last few days, what medicines I can take to get me through a night of fun? I have to live with the toll such activities will have on me the next day or so after. Am I really in the mood to recover for two or more days for just a few hours enjoyment?
Funny how something no one can see outward signs of, can wreak such havoc on your life. Yet there are signs if someone just takes the time to look. For me it is in the way I move. Where once I fast walked everywhere, now I creep along; measuring each step. I am afraid if I misstep I will fall or worse break my ankle. I live in fear of doing anything that will end up with me on crutches. I am worthless at using crutches. The time I tore my Achilles tendon, I scooted or hopped everywhere just so I didn’t have to use them. Although now that I think about it, I realize hopping around like a demented bunny was dangerous too.
Ask anyone who knows me and they will tell you that I have a limp. My sister-in-law said just yesterday that I waddle. Gee, that is a picture to put in one’s mind. I picture myself waddling along like a rotund duck plumped up for the roasting. More times than not, my fists are clenched to prevent the spasms that twist and contort my fingers. There are so many signs that the average person glances past. They are too busy finding ways to demean your suffering or to criticize those of us that live with chronic disease and illness. When what they should be doing is thanking God that it isn’t them and having some empathy.
They think when they see us get out of our cars at the store after parking in a handicap space that we should be in a wheelchair or some such. They don’t realize for the majority of us it was one of the hardest things to do. We didn’t want to deal with the criticism and the hate. We didn’t want to admit that our bodies had finally convinced us that something we were most likely feeling “denial” of our limitations had finally won. On my good days I do park a little further away and as I do I pray that during my shopping, my legs will continue to work and not begin the horrible spasms that bring me to the floor. The pain that drives me to leave my shopping cart in the middle of the store and make my way slowly back to my car. A day of joy turned to pain.
I do have to admit that living with chronic pain has taught me to enjoy the small things. To take life one step at a time, and gather what joy and happiness I can find in each moment. It has taught me grace. I am slowly learning to be thankful for the simple things in life that the healthy tend to take for granted. I wake up thankful for each day I can continue to waddle and limp. I know that as the years progress that I will lose more of my freedom until I am trapped inside a body that is a twisted caricature of who I once was.
I catch myself studying wheelchairs and making plans for how I will deal with losing the ability to drive my own car. That is going to be one of the hardest things for me to lose. I have anxiety attacks just thinking about it all. What is worse is I lay awake at night worried about being a burden to my family. It’s bad enough being the childless, single aunt who collects cats. I am not ready to be the crippled aunt too. I remember when I was the fun aunt. The one who would let you do the things the parents would say no to. Now I am looked at with disdain, no longer worthy.
I started this post to highlight what it felt like to give in to chronic pain and illness. To show what one loses when given the diagnosis. How it feels to live in our shoes. I know it became a bit morose but that is the facts of life with silent diseases. Those who suffer them, suffer them alone the majority of the time. It’s is hard to ask for help and support. Especially if you were that person before your body betrayed you. I am letting everyone know that it doesn’t have to be a lonely road we walk. There are others looking for the same thing, there are supports groups, agencies, all who offer a helping and guiding hand. Don’t be afraid to reach out, or be surprised when that outreached hand is taken in someone’s gentle grasp.
Do you see yourself in this post? What are some of the things that you have given up due to your diagnosis? Do you search for support and find none? Let me know in the comments what you do to live a meaningful life or if you wish for help. I am only a text away. Always remember to love fully and laugh often. Until next time.