Hi Sarita: I suspected that no news was not good news. I'm sorry you have been so miserable, but I'm not surprised that, as your symptoms have worsened you have chosen to wall yourself off instead of reaching out. Do you find it interesting that you see your role on this board as a giver of support rather than a seeker of support?
It's been my experience that we cope with our health issues the same way we cope with our lives -- one of the reasons that people with similar clinical symptoms can vary so dramatically in how they live with their disease.
My sense is that you are a coper. You get up each day and you put one foot in front of the other and just get on with it. You also strike me as someone who takes great pride in being competent and reliable. Your friends know you are someone they can rely on. If you say you will do something, it will be done -- no matter what the personal cost. Maybe that's why as your symptoms have been spiraling out of control that you retired from the board. You didn't have the energy to give the wisdome and support all of us on this board expect from your posts, so you just went quiet. But Sarita, isn't ok to reach out for support too? It's ok to say "I'm sick".
Is it safe to say that you live a lot of your life in your head? Do you rely on your intellect? If you just work hard enough do you have the sense that you can figure anything out?
All of these qualities are so admirable, it's hard to add a but ... but, sometimes our very strengths serve only to magnify our pain, exacerbate our misery and ultimately may block our path to recovery.
I've come to realize this is true for me and I wonder if it might resonate for you too. At some point in the process of managing my illness, all of those traits that I called upon to allow me to continue functioning at a very high level, despite significant disease activity, became engrained behaviour
s instead of considered choices. I continued to play the role of being the strong one, the competent one, the reliable one long after it had lost its functional usefulness. I used those qualities to live in a state of denial, as though by force of will alone I could will my disease into submission. They were like a whip that I beat myself with. I was locked every day in a mortal combat with this disease for control of my body. I didn't give an inch, forcing the disease to bow to my need to continue to fulfill the role I wrote for myself. Oh, there were plenty of times when the disease got the upper hand, but always on my terms. After the big project was completed (even if it meant working nights and weekends and extending workdays at both ends to accommodate those times when the disease just couldn't be bargained with) After the conference where I had to give the panel presentation. After the board meeting
I did a lot of compromising with myself and my family in order to play the role. Of course there reached a point of crash and burn for me. After 25 years and many dances close to the precipice, I awoke to the realization that I just might kill myself if I continued along this path. And I made a commitment to change. Two years of psycho-therpay and a lot of self-analysis and hard work (I can always be counted upon to work hard) and I think I can once again see all those still inherent qualities as strengths again, no longer weaknesses. I'm using my strengths now consciously and in so doing, now I can say that I am self-reliable. I have learned to live with my reality and use my strengths to work hard at making me as healthy as I can be with this dd. To do that I've had to learn how to say no, loudly and clearly. There are no end of people with ways to spend my precious energy.
I rarely beat myself up anymore when I am sick. That used to be the worst of it. I couldn't use the word sick, so I described it as lazy when I would crash. I wonder if you are sometimes hard on yourself? I hope not. You're coping with so much stress right now. I can't imagine what it must be like, the not having a diagnosis.
You are just at the beginning of living with illness Sarita. I know you are feeling overwhelmed, impatient, angry with the system and maybe even with yourself. I sincerely hope that you can use all your incredible qualities to support yourself throughout this difficult process, even when to support yourself means giving up control (temporarily), extending your hand and accepting the help that I'm sure is out there.
Can you just tell your doc at the Mayo, "I am sick. I need your help. I will work with you, I will be a partner, but I need you to help me sort out this mystery."
Just for a little while let your doctors carry the load. It will always be there for you to stack back on your shoulders, but everyone deserves a rest now and then.
You are such a source of knowledge and common sense for the members of this board, Sarita. But we are honoured to help you carry the load too.
30+ years living with Crohn's.
Post Edited (belleenstein) : 7/8/2008 1:56:20 PM (GMT-6)