The 5 stages of grief are denial, anger, bargaining, depression and acceptance. And I think I'm coming to an understanding of acceptance now...finally.
It doesn't mean I am by any means happy with my health and abilities. I still REALLY want to do so much better than I am, to feel better, to be active, to get my mental abilities back, my physical ones, etc. But for the most part I have stopped expecting more of myself than I can give.
It also doesn't mean that I have stopped trying to get better, to seek help, and to progress past my current limitations and level of health. I just can't let that drive rule all my thoughts and actions. I have some very serious health issues still (empty sella syndrome, hypopituitarism, hypoaldosteronism, hashimoto's thyroiditis, low vitamin D, liver damage from medication to treat Cushing's, etc), any one of which could cause severe fatigue, but we have yet to find the magic bullet to get me on the upswing. I'm still looking for answers, still testing, still adjusting hormones, and I still carefully test my physical limits to see if I can move forward (it still backfires, sadly). I just can't let this desire be my entire focus because I already know from experience that the lack of timely progress will swing me right back into that dark head space I was in before. I can't spend my life in that place. No matter how limited that "life" may seem, I need to live it better than that.
So I have not come to the point of accepting that where I am is where I will always be. But I do have to keep a positive outlook, and that means accepting it may be a really long road (already has been) to recovery, and having realistic expectations of what "better" might look like for me. From the outside looking in, the improvements I've already had may appear rather minimal. From my perspective, some of them have been huge. I wanted more, I still want more, but I have to be grateful for those changes I have seen, and realize that any improvement gets me one step closer and gives hope for more.
I'm no longer depressed daily by the thoughts of everything I've lost and everything I am missing (luckily that one went away early on in this path). Though sadly, with a chronic condition, I'm not sure that the stages of grief are ever final and gone. I think they just show up less often the more we accept our illness.
My life is still so different from the lives of friends, I don't know that it is even possible to bridge that divide of understanding. Some times I just don't have the energy to try (and especially to fail) at explaining some aspect of my life. Few people want to spend the time and energy to truly understand, and sometimes I think people just can't fathom it even if they try. I get it. Where I am now is so foreign to where I was 5 years ago. It is really hard to believe I ended up here when I think about it...and I've lived through it!
But this gap can mean that in the course of totally normal conversation and events, I am hit with a reminder of how different my life is. For the most part now I choose not to even mention it, and try not to think of it much or dwell on it. If I share my reality with those who love me and want to know, it comes across as depressing, overwhelming, and sad. There is just no way to sugar coat it so thoroughly to not have that happen. And I don't want to be constantly going on and on about how bad my life is. I've done that. It doesn't help me feel much better, and by no means helps them feel better!
My life is actually fairly good, despite all the horrible crap, because I
choose to feel that way about it. Each day is different, and some days
are horrific, but I choose not to dwell on those and each day truly is a unique experience, no matter how "same-same" it appears on the outside. I do feel a need for others to understand still, to connect on a deeper level, but I choose not to force it. I don't know that I could have done that before, while in the midst of such difficult struggles. I do know I didn't do that. I was so desperate myself, that my need to share and be understood came first. Huh, maybe it is all about my needs still, but my needs have changed to a need to keep friends, to interact with them as "normally" as I can, and to not dwell on the hardships so that I can endure in hope. Guess it's all still selfish motivation! Dang it.
My point is, there are still things that bring the grief cycle back to my present, forcing me to work through it all again. It could be as simple as hearing a song and wanting to jump up and dance to it, a recipe I want to cook, seeing an advertisement for a musical I wish I could participate in, reading a meme about getting away from electronics, sunshine out my window, sorting through sewing fabric, or the desire to go shopping or to just leave the house. It's always something unexpected, frequently something common, and often something I have already grieved over at some point. But for some reason on that day, it strikes my grief cord and I have to go through the grieving process yet again. The difference is now I know I can work through it, and I can do it so much faster than before. It's almost like after-shocks. The big grief-quake is over, these are just leftovers -reminders of what I went through, releasing smaller bursts of energy that still remain. These grief after-shocks seem to be dropping in both intensity and frequency, so hopefully that improvement will continue, and it will not be contingent on my recovery. I hope I will get a LOT better, I WANT to, and I'm still working on it, but I can be happy now.
