I was having a discussion with a friend today about my health and the prognosis of my many conditions; he asserted that I could and would get better whereas I pointed out that I have been continually getting worse for my entire life and that realistically the prognosis isn’t good.
Sure, I can treat my lyme disease with tons of antibiotics for the next several years, and if I’m lucky I’ll put it into remission, but what kind of permanent damage will be left at that point?
We all know that my heart will never be the same after 2 surgeries and many, many episodes of SVT/Vtach which causes damage to the heart muscle.
I have developed arthritis in several of my joints, including my hip and hands. I also basically have the spine of an old person, with a type of arthritis that generally only occurs in the elderly. This is a degenerative arthritis, as well as I also have degenerative disk disease. “Degenerating” in and of itself implies that it will get worse over time, right?
So my friend’s argument was that if I tell myself that I won’t get better, then it will become a self-fulfilling prophecy and I never will…such an optimist, he is. 🙂 My point is that if I go through life expecting to get better, when it doesn’t happen that will be too difficult to bear…not to mention the point that all the facts point to me continuing to get worse, not better.
Call me a pessimist, but it’s just how I feel.
I understand my friend’s point, I really truly do, but it’s one of those things that is much easier for him to say since he is not in the same situation. On one hand I wish that he could spend a little time in my body to experience what I feel every day, maybe then he wouldn’t be so quick to chastise me…but on the other hand I would never wish this on anyone, especially not someone I care about.
I’ve said this before, but I’ll say it again, living with this amount of pain every single day changes a person…it makes you sadder, angrier and pretty much dead inside. It takes away pieces of you until you don’t know who you are anymore. It makes you not want to go on living. (Disclaimer: I AM NOT SUICIDAL. Please don’t freak out)
Does that mean that I take such a pessimistic view of my prognosis because I don’t WANT to go on living like this? Maybe (I mean, really, who WOULD?). Does it mean that want that to become a self-fulfilling prophecy? No, definitely not.
I WANT to get better. I do.
I can’t tell you how badly I want to live a normal life. I want to go to medical school and be an incredible doctor who heals people. I want to exercise, to train in Tae Kwon Do again, to go running and lift weights. I want to have children, without worrying about what sorts of horrible diseases I will pass on to them; then I want to be an awesome, fun mom, with energy to make great memories with her kids. I want to wake up every morning and NOT be in pain. I want to go to the store without needing a handicapped parking spot, headphones, or a wheelchair; then I want to walk out of the store without wanting to collapse or cry. I want to go out, dance and drink and have fun like most people my age do. I want to go to the doctor and have her find nothing wrong with me. I want to date, without worrying if the prospect of being with a sick girl will make him run for the hills.
I want to be healthy.
All of these things most people take for granted, probably including my friend, yet most of them are things that I will never be lucky enough to have.
Even if I were to put my lyme disease into remission, I would always have to worry about passing it to my children, I would always have to warn potential husbands about the possibility of it coming back, and always be afraid of overdoing it with exercise or catching a cold and causing it to come back. Then of course, there is always the relatively large risk of it coming back, and I sending me right back to where I am now. Not to mention whatever lasting, irreversible damage has been done.
I will always have to live in pain, that’s just the cold reality of my life. Even with lyme in remission the damage to my back will never be repaired; even if it never got any worse, it would still prevent me from doing many things I want to do and cause me pain for the rest of my life. I cannot go through life making plans and having dreams that will be unattainable as long as I have pain, because I will ALWAYS have pain. Sure, I could strengthen my muscles to minimize further damage or unhealthy movement of my spine that causes pain, I could get pain relieving injections and possibly even have surgery to compensate for some of the damage, but I will still always have pain. I will never be NORMAL.
I know, I’m being really depressing tonight, but this is the reality of my life. While my friend is overly optimistic, I am a realist. I would rather look at the reality of the facts, and prepare myself for the worst, than get my hopes up for something that is unlikely to occur. As for that becoming a self-fulfilling prophecy, he has a point, it might. All I can do about that is continue to strive for the best outcome I can get, I just refuse to expect for that outcome to be unrealistic.
My friend said he didn’t believe me that I feel this way because I continue to try to get better by taking massive amounts of antibiotics, going to doctors appointments and having surgeries. I won’t lie, it does make me wonder why I’m trying. Why do I bother? Why put myself through all of these treatments which are expensive, painful and time consuming if my best hope is a temporary remission and a painful life, and even that is far off and possibly unlikely? What’s the point?
You wanna know the truth? I have no idea. I told my friend that I try because I’d rather not die, which is true, and the scary truth about untreated lyme disease. I also appreciate the fact that my not trying would hurt people I care about…unfortunately I understand that all too well. I also have a healthy concept of the fact that while I may never be normal, I can be “better”; I do not always have to feel as terrible as I have lately. Even given those reasons I still don’t completely understand; I guess I try because that’s just what one does, you get a diagnosis and you take the treatment…but that doesn’t change how I feel about the whole thing.