In my last posting I touched on the emotional aspects of the EDS conference. In my journey with chronic illness, I have swung between the "there's nothing really wrong with me" mindset to "Wow! What if there's something really wrong with me and it will kill me" mindset. Now that I have a diagnosis, I'm not really worried about dying from my illness, in fact, I tend to underplay how it affects me. So, going to the EDS conference and seeing all of the people in wheelchairs (most much younger than me) and in various states of bracing, well, it left me to face some feelings I've far too long ignored. The fact is, I probably should have been in a wheelchair and I'm probably doing just as poorly, if not more poorly than those who were in their wheelchairs. Now, I'm not saying that so people will feel sorry for me, it's just the truth as I'm now seeing it.
My journey to a diagnosis was a long, painful one. Painful physically and painful emotionally. Most of the emotional pain came from the medical "professionals." I was told I was depressed, was questioned as to why I would even want a diagnosis (hello? For treatment, maybe!), was told that while there may be something wrong with me we might never figure it out. Really? Never? No, we likely wont figure it out if you don't at least try to help me figure it out!! I'd go to a new doctor and I'd leave feeling hopeful that this one would be the one to help me, but after the tests they'd ordered turned up negative, I was let go. I was, more or less, told there was nothing wrong if those particular tests didn't show anything. I went through a variety of stages during this time from hurt, to anger, to agreeing with them that perhaps they were right. I just needed to suck it up and get on with my life. The thing is, I have never, ever been one to slack off from any of my responsibilities in life. My response to their unbelief was just to push myself harder. And up until a few days ago, I realized that I was still doing that, even after having a diagnosis for a year. This became crystal clear to me when I caught myself wondering if I could just not do my housework for the day. Would it be okay if I just "allowed" myself to be a sick person for the day? On that particular day I slacked off a bit, but I took a pain pill so I could push through what I felt had to be done. I have to believe that if I don't change my way of thinking that I will be causing more damage to myself in the long run.
Okay, I'm taking this on a different direction here. You think reading my thoughts are confusing, you should try talking to me! One thing that was brought up in the conference (or maybe I read it somewhere, honestly, I can't remember now) was how those with chronic illness tend to do all that they feel has to be done first, work, housework, etc, which leaves them with no energy, and/or too much pain, to do some of the fun things in life. Those things, being with friends, reading a book, listening to music, going to a movie etc...whatever brings you enjoyment in life, are the exact things that those of us with chronic illness need to be doing to stay emotionally healthy. Really, I feel we almost need these things more than a healthy person does because they are things that connect us to others and we might not get that if we aren't working or out in the community due to our illness. I hope I'm making sense here.
So, tying this all together. I am realizing how I need to make some changes in my life. I'm going to either quit my job entirely or work it out so I don't go into the office at all. I'm only going in for about two hours total (about an hour two days a week) a week now. That might not sound like much, but it's two days a week that I have to get up, get dressed and drive somewhere. I've had friends who have told me that I shouldn't quit. That it's good to get out. That it's nice to make my own money. Yes, those things are true, especially for a healthy person. But, I will still get out, but on my own terms. When I'm feeling well enough to do so. And, I'll still have my own money as I'm getting disability. What this will do for me is allow me to enjoy some of the hobbies I can't seem to find time for. It will give me for flexibility to get the household duties I do have done. I just can't help but think this is the right thing to do. I wont be losing anything, I'll be gaining so much more! And, I really don't feel as if I'll just be giving up, laying in bed all of the time. But, if my life does come to that in the future, I will have to come to terms with that, just as I'm coming to terms with this phase of my life.
Any thoughts on this from anyone out there?
Have a happy week!