This post may ring true for those of you that have had CES for more than a decade, and for those that have severe problems that keep you from being able to work.
I have had CES since early 1999. Despite two attempts to return to my career, my CES has resulted in my being permanently disabled and pretty much home-bound since the months right after my injury. Like many of you, I suffer from the wonderful symptoms of bowel and bladder dysfunction, crippling nerve pain, numbness, foot drop, decreased circulation, depression, etc.
I am married and have three children. In the years since my injury, my two oldest children have long since finished school and moved away from home. Now, the household is just my wife, our youngest son (age 16), and myself.
My wife works at a career in the Education Field in which she spends upwards of 60 hours a week working. Our son has school, sports, and works about 20 hours a week after school. During the school year, I am pretty much home alone during most of the weekday hours.
My family has been my greatest support during all the many years that I have been disabled with CES. Without them, I don’t think I could have made it. I have had countless days where I could just not envision going on with a life of living with this terrible “Invisible Nightmare”.
As I have written on this blog many times in the past, most of my days are ones of boring monotony where seemingly every minute of the day is filled with battling various aspects of my CES.
Because most of our symptoms are invisible to everyone else, our battles with this condition all happen internally. Others cannot see when we are having problems unless we tell them, or unless we are asked how we are doing. Others cannot see the crippling nerve pain. They cannot see the constant battle with the bowels or bladder. They cannot see the numbness and tingling that could easily drive you mad. Simply put, they can’t SEE THE CES.
But, it’s there.
It’s always there.
And it’s real easy for us CES sufferers to find ourselves in a position where we feel that everyone around us has seemed to forget that we still have CES and that for most of us, we will have it for the rest of our lives.
I can’t remember the last time that a member of my immediate family asked me how bad my pain level is. Family members come home, ask me what I did all day, to which I often reply “nothing” or “not much”, and the conversation usually ends there. Sometimes I sense that THEY wish they could have days away from school and work where they would end up doing “nothing” or “not much” over the course of a long boring day. Sometimes I will add that I have been having bowel issues to try to explain my lack of getting anything done, and again, things are usually left at that.
I don’t volunteer the fact that I am in constant pain in my legs and feet from the CES, mainly because I know the standard response will be “go see a Doctor”. What is the Doctor going to do? I have had this pain for nearly 15 years. They have tried medications, surgeries, injections, and even a spinal cord stimulator to try to ease the pain.
The narcotic pain medications did ease the pain somewhat, but they also brought horrible constipation which caused me many bowel problems on top of the bowel problems I already have. Due to this, I have not had any narcotic pain medications in nearly a year. The many spinal injections and nerve blocks that I have had over the years had no effect on my pain. The spinal cord stimulator that I have had for nearly 18 months does very little to relieve the pain in my legs and does not alleviate any of the pain in my feet.
Many days, I curl up on the couch, in pain, and watch TV for the majority of the day. I try to do as much as I can around the house. Even with my CES issues, I manage to do 90% of the laundry, dishes, grocery shopping, paying of bills, housecleaning, and yard work. Some days, I cannot keep things as clean as I would like and dishes and clutter start to pile up, which usually results in my being chided for leaving the kitchen or another room “messy”.
What I’m trying to say is there MAY be a time after many years where it seems like the whole world, except you, has completely forgot that you are even disabled and have CES.
I would trade anything in the world to be able to go off to work or school every day and live a “normal” life once again. Truth be told, I have forgotten what a normal life even felt like. I will sometimes mention that I got up at 9am on a particular morning and will get a comment to the effect of “it must be nice to be able to sleep in” or something to that effect.
Trust me, if I do “sleep in”, it’s usually because I tossed and turned half the night with the maddening pain and numbness in my legs, or I was up multiple times trying to use the bathroom like a “normal” person.
Everyone around me forgets my issues, and I have forgotten what my Pre-Ces life was even like. I would give anything to be able to just go to the bathroom normally, without my stinking bowel problems ruling seemingly every hour of my day. I would love to be able to feel my legs and feet again. I would love to be able to actually jog down the street one day. I would love to be able to just “walk” normally without this damned foot drop that causes me frequent trips and falls. I would love to be able to sit here at my computer for an hour without my legs turning purple and blue because of the crappy circulation. I would love to be able to have a normal sex life again, but nearly 15 years of sexual dysfunction caused by the CES has totally destroyed my wife and I’s sex life.
I would love to be able to WORK. Actual, out of the house, working with others, WORK.
My son bags groceries at the local grocery store. I envy him. I would give anything to be able to just bag groceries and carry them out for customers, no matter how low the pay. If only I could stand pain-free for hours and did not have the damn bowel issues which threaten to pop up, without notice, any time, any place.
Many days, I just lay here on the couch and try to calculate just how long I may end up living. I try to picture three more decades, or more, of living with this nightmare. I know that I will NEVER get better. If things hold true like the past 15 years, certain aspects of my CES will actually get worse. It’s just a nightmare with no end in sight.
And many days, it feels like I am the only one who even remembers that I am even disabled.
So, how am I doing today you ask?
“I’m in constant pain, I can’t go to the bathroom normally, I’m depressed, and for about the hundredth time in the past year, I tripped over an invisible crack in the floor and fell down, in a quiet, empty, boring house, but other than that, I am just fine”.
I appreciate you asking.