It feels like much has changed since my last post. My folks and sister returned from vacation. I had some wonderful visits last week. My bestie came by and helped me unpack somethings, plus we had a nice chat. She is coming by today and we will be celebrating her birthday this week! My fellow Potsie friend also came by for a visit with her mom and that was really wonderful. She even painted a beautiful picture for me- its a mermaid! It was really nice to spend time with friends. Catching up and bonding with my bestie has meant a lot to me. It’s grounding in a way and I love sharing our old memories. And connecting with my friend who is also a Potsie has helped me to learn and feel understood. It’s really special to know someone who shares in so many aspects of life and she’s really an awesome person to top it all off. I’m really glad for these friends.
I was actually supposed to go to a reunion party of sorts this weekend, but had a raging migraine instead. It was in the evening, and heaven knows it was already unlikely I would have been able to make it. It’s just that I was looking forward to it for months. I even got myself all dressed to go but could not get myself up to leave the house. I was touched that some old friends checked in to see where we were. I so wish I could have been there to see them all and learn how they have been doing.
Now that my folks and sister are back, I’ve been able to catch up with both my mom and sister. I’ve discussed getting medical care with my mom and she’s onboard. We even have an appointment with my GP this Wednesday. I still worry about putting so much on her plate when I know she is not as energetic, so we will see how it goes. She is a good woman and I appreciate how willing she is to help. I hope I keep a close eye on her boundaries and limitations so that I don’t ask her for too much.
Talking with my sister went as expected, but I am still heart broken, nonetheless. As she has been hinting at for sometime, she wants to step back from our political activism. I need to respect her wishes and understand that she has many responsibilities. I have evaluated my current ability levels and determined that I can not take over for her, so we have put our activism efforts on an indefinite hiatus. I want so badly to be out there making a difference, but my cognitive issues have been taking up so much more of my days lately. I need the small window of time I do have each day to work on self care, my other volunteer work with Dysautonomia, and maintaining household and working on family support. With this realization comes a deep sense of loss. I found such purpose in activism, and at the same time, I know I wasn’t taking proper care of myself. I know the importance of self-care and I know what happens when I prioritize other things above it. I must take care of myself so that I have the strength to do other things. I must listen to my body for now.
I also need to use my energy towards supporting my husband and my mother in law. My mother and I went to visit my mother in law yesterday and she is really having a tough time. She’s been in and out of the ER and is still dependent on so many machines like the ventilator and dialysis. It’s so hard on me to visit her with the long drive each way. Yesterday we had to wait to see her because she was feeling so unwell and they needed space to work on her, but we finally got ourselves in. The whole thing just breaks my heart over and over again.
I try to understand what I am learning from all of this, because I truly believe that life has so much to teach me. My current theme seems to be powerlessness. I feel powerless with my own health, the state of our country and world, and my mother in law’s health. And yet, I put the very little energy I do have into attempting to have power over these things. I know I have some influence, but making a big change in any of these areas is likely beyond me. So, I am muddling over what that means for me. I think it is a time for me to reflect, to observe, to gather insights. I need to take a break from trying so hard and let myself restore and regroup so that I can find my way anew. I want to find more ways that I can make a difference with what I do have and to do so gently, with out over exerting so, and without relying so much on others. Sustainability is the key.