Congratulations! By now you and your loved ones as well as the medical profession, are all on the same page. I would not interfere with or suggest that I know how or why you reached this mile stone in your life, but I understand as you must have, that we each have our own path to take when reaching this point.
If you have followed my posts, then you understand as I do, that I cannot write about the disabled through mental illness, severely brain-damaged, catatonic, or severely paralyzed as, I, just like you, have never experienced this type of disability. Just as there are stages in cancer or heart disease there are also stages in disability. Sometimes, especially with injury, it is a very slow progression, if it progresses at all, and with others, that include disease, it can be fairly rapid. I do believe it is safe to say though that regardless of the disability, unless we have reached the mental state of acceptance, none of us do totally understand how we will react or respond a year from now.
I hope that by talking about my own experience then, I can help you discover,as I have, that the mind needs to be in the place of acceptance in order for the body to respond accordingly. When I reached the point that I understood any further testing would simply update medical records and bring no further relief or change of treatment to me and that.” it was what it was,” then I understood,I was left with nothing further than accepting what I could do and what would be very painful to do.
I began my introduction to the idea that things would never be normal in my life, as I had planned it, when my body was sending out all kinds of warning signals that seemed to be untreatable but at the same time was raising my blood pressure. Along with the disabling disease that caused a great deal of pain, I was reacting to the treatment. Our children were still quite young as I was only 28 years of age, and initially I could not distinguish between symptoms of what ailed me, versus symptoms of drug reactions. It is extremely difficult to do, especially when the diagnosis is inaccurate or someone has deemed themselves God in our lives, and decided to withhold the truth from us, by playing down our symptoms when we ourselves already are experiencing debilitating pain.
I went through all the emotional upset and trauma that we all go through as I had always had the attitude that it would be easier for me to die than to be disabled. I, like everyone else, had heard of,” all the miracles of modern medicine” so it came as a shock to me that medicine could not cure everything much less not be able to treat everything. Just like you, I asked the question, “why me” until I was able to answer it with “why not me?” All kinds of mistakes were made by me and those around me, and I definitely suffered dark periods in my life. Whenever they attempted to treat one area of my body then it would throw off another system of my body. This is quite common in treating the central nervous system.
Many times I had to complain for several years before I was taken seriously about my complaint once the Dr.s did get the diagnosis correct. There was a real sense of, “we can’t do anything about her complaint so lets find something wrong elsewhere and get her to concentrate on that.” I would advise everyone prior to having surgery of any type to ask if it is elective or mandatory for the condition in which you need relief. It took me much too long to see past this ploy, I’m afraid.
In short it was a helluva place for me to be as I tried to protect my loved ones from it and never spent a day in bed outside of when I was hospitalized. I went ahead and took care of my own responsibilities along with most everyone elses, other than my immediate family who understood as they lived with me, until I reached the point that to push myself any harder was very destructive to both myself as well as my longevity.
Still today I will go ahead and do something that causes a great deal of pain like refinish a piece of furnish just in order for me to understand that if I had effective pain treatment I would not be physically disabled. Effective pain treatment at this point would definitely put me into an almost catatonic state due to the increase of the necessary amount of drugs it would take to allow me to operate pain-free and under normal ability. Sadly, I am allergic to the standard form of treatment for my particular disease.
At the very least, abusing or increasing substantially, the only drugs available to my treatment themselves, would lead to mental confusion,anxiety and depression, if not cause early death, so I gladly live with the pain treatment that dulls pain if I do little to nothing. I can still determine to what length of time and rest I can take and still feel well enough to enjoy my life. I plan on staying in charge of my brain since I do have less and less to say about my physical abilities and must use the necessary aids available to me.
With all diseases, there are good days and bad days. My best days will always be the days that I can accomplish doing some of what I want to do. Many times because I have developed interests in oil painting,collecting,reading,genealogy,research and writing I can have a terrific day doing very little according to Society’s point of view, and still be relatively pain-free, as well. I can do most hobbies upwards of an hour a day. Most of us will learn that we have never really done what it is that we truly love doing, prior to our injury. At this point it is all about keeping my mind healthy to both concentrate, learn, and to becomes less dependent on the pain treatment.
I understand that on days that I want to do something I will pay the price in pain but I prefer doing it, to being waited on by a caregiver and being bed or chair bound permanently, due to the fact that my mind has been lessened as a result of pain treatment. Since pain is no longer relieved by rest my tolerance to pain has built naturally over the years. There is a real danger with Doctors either under-treating or over-treating with pain medication so make sure, you yourself, knows the difference.
Long story short, it is my hope that all of you can and do reach the point that you have cried your last tear, yelled out of anger and frustration, for the last time, and found genuine peace in the things that you can do. I hope you find real joy of waking up each day knowing that you and only you are still in charge of the areas in your life that matter the most.
I hope you never question or listen to what people who have never experienced your level of disability have to say on the subject.(unless they are medically or spiritually trained to offer relief or peace of mind or are kind enough to act as your caregiver and to listen to you) I hope you have found a Dr. that will be honest with you and help when you do ask for help. I hope you know to celebrate and rejoice in what you can do and no longer grieve what you can not do.
I hope you have learned the value of this moment,hour, day and see the beauty in each day. I hope if you require a caregiver and still have responsibilities that you do not ask others to do what you can still do ,yourself. I hope you have a good imagination that allows you to figure out a different way of doing the same thing that you use to do and have learned patience in doing so.
I hope you get a genuine”kick” or “hoot” out of life and count your Blessings for being a part of the human race, regardless of what the ignorant or ill-informed seem to think or believe to the contrary. I hope you despise sympathy and understand and empathize with others who have less than you do. But most importantly of all, I hope you do know your own strengths as well as your own limitations, and have a support system that applauds you for knowing the difference. If that includes no one more than yourself and a good book and you still know the joy of waking up each day, then you have made it, my friend. I do know it is all possible with the right attitude, just as you have already learned, yourself. Congratulations! I’m proud of you!