I finally cut my hair and my folks and sister are back from their trip. It feels like change is in the air. Cutting my hair may not seem like a big deal, but I’ve always loved my hair and have never liked to wear it short. We did an undercut in the back and then cut the rest at around chin length in a bob style. I really hope this allows me to keep up my personal hygiene and care. It was a choice between cutting it or finding a way to have someone help me wash it. I really do like how it came out and it even reminds me of a style I tried in high school, it’s just taking some getting used to. I know I made the right choice. We also bleached out all the color (and toned) and I always have loved that silvery platinum look. So, here is the before and after:
I’ve been noticing a lot of choices like this- making changes to stay independent or asking people for help. One person who has helped me so much over the years is my mom. She was there for me through my whole tumor fiasco and nursed me back to independence when I was recovering from that major surgery. She’s been an on going part of my medical care, driving me to doctors and helping keep track of everything. She flew with me to Stanford when I finally got my POTS diagnosis. I’ve had a few stints, like when I was living in San Francisco, where I was without her, but I was more functional then. Now that I got off of my old Kaiser insurance and need to get back into the doctors, I don’t feel able to manage on my own. We went back to an old GP and asked him to help with a referral to a San Diego specialist, but they GP said he couldn’t get me a spot. Since then, I’ve been dead in the water as far as medical care goes. A couple months ago, with my folks’ trip in the works, my mom asked me to wait until they returned before trying again with doctors. What was I to do? My brain fog has been getting worse making me need care more and making it more difficult to manage on my own. Now that she is back, she is very tired and has been putting off most things. I think she’s actually been getting more tired since winter time, so this maybe the new her.
It’s hard to know when to rely on others and when to realize others may not have the energy or resources to help you as you’d like them to. I’ve been talking to my husband about him potentially taking over as the person to help me get to appointments, to help make medical decisions, and to help me communicate with my doctors. However, he works full time and spends his free time driving up to visit his mother. He is over stressed and over extended. And yet, I can see he is frustrated that I am not getting medical care and he is willing to step in. I think it’s time for my mom and I to have a straight up talk. If she’s getting too tired to help me with this stuff, I can understand that, but I can’t just wait indefinitely for her. Goodness knows she has done so much for me and I am eternally grateful for that. Still, I need to make alternative plans if she can’t help me with this anymore.
My sister is another who I had gotten more comfortable leaning on. I think that’s been a big deal for us since she is so into being independent and has previously tried to toughen me up by not “enabling” me by acting as a crutch. We’ve gotten closer as we’ve worked together on political projects. She picks me up at my house, helps with my wheelchair, and gets me out to events. We’ve teamed up on the group we created. We’ve joined others on projects and I’ve been able to do that because she can fill in for me, she can speak up when I am too spacey, she can attend meetings when I’m unwell, and so on. She’s been burning out for a while and I think she may not want to keep up with it now that she’s back. I can’t do these things without her, at least not in the same way. I’m not really sure what I will do if she wants to back out. Maybe I could volunteer for someone else in a different way- stuff I can do from home. It’s been hard to admit, but I bit off more than I can chew with the volunteer stuff. There have been times where I sacrificed health to volunteer and I know that’s not sustainable either.
It’s really a tight rope balancing between independence and relying on others when one lives with chronic illness. I aim to be independent whenever possible, but sometimes leaning on others opens my world to things I couldn’t otherwise do on my own. I work extremely hard at expressing my appreciation to those who support me, to the point where it’s been requested that I tone it down a bit. I never want to take away from anyone’s happiness and I understand that my family has finite time and resources. I want to adapt to their changing needs and to be gentle with any expectations and allow for those to be adjusted as times and circumstances change. I am so very close to my mother and sister and those relationships are so very important to me. I want to do everything I can to maintain these bonds, to nurture these relationships.
And I feel so loved by my parents and sister. In many ways, it was hard to have them away on a vacation I would have loved. I still knew they were thinking of me and they let me know they missed me a number of times while they were away. When they returned, they brought me so many gifts! I feel so very spoiled! I just love celtic stuff and they found a number of items with motifs I love. And I love listening to their experiences. They sound so moved by what the saw and did and I am glad that they could share that with me.
I feel blessed to have a family made up of best friends. And on top of that, I have my husband, my bestie, and more friends and family. It’s been harder to know how to deal with them all now that brain fog has been taking over my days. In fact, it’s quite exciting to be so lucid and able to write this much. I don’t have many windows like this and I am taking advantage this morning because I need to be able to process these thoughts and writing here is a powerful tool to help me do just that. Lately, I had that great talk with my bestie and she is coming tomorrow to help me out with somethings. This means a lot to me. And the next day I have a newer spoonie friend coming to visit- I mentioned her before- we met at a Dysautonomia conference.
Speaking of friends, I went to an old friend’s baby shower yesterday. It was early afternoon, so I hung in pretty well. I did have some extended spells of brain fog, but I just stayed quiet. I don’t mean to seem unfriendly, but I do my best! It was really nice to see old friends. I notice that when I hear about wonderful things that others do that I also wish for, I am still joyous about it. I realized what a tremendous gift this is. A friend told me of his travels and active life, and I was just happy for him. And my friend who is pregnant- I am through the roof happy for her. I do wish I could be pregnant and build a family, and I may even get very sad sometimes that I don’t have that, but nothing gets in the way of being happy for others. I even came up with an exercise to help me focus on that joy while still encouraging me to face and cope with my own unfulfilled desires. I breathe in the joy and happiness for the person in my life, then I breathe out that angst and longing I feel for my own desires. It gives me a strange feeling of happiness and catharsis at the same time. It feels like a very positive way for me to work through these things and I’m going to keep using it as a practice.
And I still want to create my own joy. I’m still seriously thinking of throwing a big party for my birthday/housewarming/anniversary. I’m even looking at caterers since I realistically need a ton of help. The theme: Picnic Pool Party. I am feeling the laid back boho styling with blankets and pillows on the grass next to the pool. Here’s some inspiration:
So, that’s another example of something I need to find balance with between doing it myself and getting assistance. And maybe this is good for my personal development in some ways. I am so nit-picky and like to do everything myself and I have had to embrace delegating, let go of shooting for perfection, and be more open to other people’s ways of doing things. These are good lessons I was likely long overdue for. And let there be no doubt, I will take each thing that comes as an opportunity for personal growth and reflection. One of my biggest life goals is to develop myself and while chronic illness may feel like a hindrance in many regards, it sure is a catalyst in the personal growth department. It provides me with new perspectives and challenges that may feel difficult, but they allow me to learn so much.