@rckj Again it has taken a while for me to respond. Sorry. I think that today I have resolved the fact that I was not notified when you posted. It was easy to do, but for some reason I did not previously see the option to be notified. Thank you for describing your medical diagnosis and the experiences you are having you. There are several of your concerns to which I hope I can add helpful thoughts. Forgive me if I am repeating anything I have already said.
Intense fear was a primary response I had awaking from delirium/coma. It continued after I moved to another floor, as well as when I went to a transitional care system… and finally to home. My fear grows from not knowing if the day will be uneventful and from not knowing if my physical/emotional condition will be stable in the future. For you, fear might be repeatedly reactivated by the reality that your condition can quickly become critical and from the number of times you have been in the ICU.
Thus, my thoughts from my situation might not be helpful and excuse me, if this is the case. It has taken me two years to partially work-through fear about my health and future. With this fear, there is anxiety (and depression) for which I am treated with medication and counseling. It wasn't until last night that I heard myself say in a discussion that fear keeps me from serenity. For me, serenity is related to faith in God. Last night I said out-loud that am slowly growing in trust of God that no matter what happens, I can accept it.
Belief in God might not be the case your experience or that of anyone else who will read my post. Instead of God, it could be that you have a core belief about life to which you can appeal when you are 'down and out'. An example of a core belief is: Each day there is the promise of mini-joyful experiences. For you this might be your husband's deep love for you. Anticipating that your core belief will be affirmed during a day might give birth to or increase your sense of joy… or hope.
I know that it is a stretch to imagine joy, even hope! For most of my recovery, I have been regularly afraid that another 'shoe would fall'. This has been compounded by the fact that a second surgery at Mayo unexpectedly resulted in a second experience of septic shock. For the first time, I now reveal this: Just before my husband and I got in the car to travel the 8 hours to Mayo for that second surgery, I said "Let's take a selfie." I suggested this so that he would have a happy photo of us in case the second surgery resulted in septic shock and I died. Since I was so close to death the first time, I feared I could not survive a second time. Fear… always in the shadows… or pronounced in nightmares.
Then, a month ago I was scheduled to have the minor procedure to have the cataracts removed from my eyes. Though I knew there was not solid reason that this would be a risk for septic shock, I was afraid that I would lose my eyesight. Then, last week my husband I went to the North Shore to 'get away' so as to hopefully give me a lift from the deeper part of depression. We planned to snowshoe, but I was afraid that I had not recovered enough physically to do so. When we started down a very modest hill, I stopped and said I could not do it because I was afraid I would not be able to climb this hill on the way back to the car. Fear… Fear… controlling the day.
However, gradually I note that the positive moments which dispel fear are moments that are building. When I go to bed at night, I now look forward to two experiences… falling into God's love, a core belief I hope eventually will help me fall to sleep easily and will wipe away the bad dreams. The second is that in the morning I will wake to enjoy a cup of coffee! While recovering at Mayo, in transitional care, and in the initial weeks at home, all I had were a few sips… but, I kept the coffee-drinking in my daily regimen. Are there small, simple enjoyments that slip away when you are facing treatment, an emergency, or hospitalization? Can a joy be activated with the assistance of the medical community, your husband, a friend, and you?
Burdening my husband and fearing he would lose his health from caring for me, especially when he worked/traveled 10 hours, 5 days each week, was of concern for me. I did not feel guilt about burdening him, because I knew I greatly needed the care that the medical community trusted he would provide. However, I worried about him. Though his deep weariness was obvious to me, he was clear that he wanted to care for me. He said that he celebrated that he could do so, because in the first part of my experience in intensive care, he was so afraid I would die or would end up living in a care center because my heart or brain would not recover well.
I imagine that your husband and you have discussed your concern about burdening him. Perhaps he and you can list the reasons he and you are a team sharing the burden of care and that this makes your new life better than other possibilities. Perhaps this would help each of you continue to deal with sudden changes in your well-being and other hospitalizations, if that would occur. Maybe he and you could rely on a core belief that you were 'meant to be' a team in life, no matter what occurs.
I do not want to overload you with my ramblings. I am sorry if I have touched your suffering and sorrow in unhelpful ways. I am disappointed that I could not respond sooner, especially since you mentioned you were sad. One more thought that comes from my experience is that I have found that my sadness is deep grief… the realization that when the first critical event occurred, my life took a major turn away from what I was expecting. Then the second critical incident. As the two years of my new life are unfolding, I find the sadness, grief is lessening. This does not mean that I do not have emotional struggles. When I responded to you at the end of February, I had been diagnosed with Major Depression, and a "mood stabilizer" medication was added to the anti-depressent that I was already taking to the maximum allowable amount. The new life can be very tough, as you know.
In closing, I can say that one joy for today is that I met you within this 'Just Want to Talk' blog. May you be able to name at least one joy for today. M.H.
P.S. I snowshoed down the path I was sure I could not snowshoe up. The upward way was not as bad as I anticipated. I just did not look too far ahead to see what was ahead of me to climb. Maybe I could remember this when I am looking too far ahead while recovering. Instead, focus on the moment that is… one moment at a time.