Lately I have begun to think about end of life stuff. I don’t want to. It seems like you are welcoming it. And that to me seems self fulfilling. I’d like to think that I am not superstitious. But I am…..Just a little bit. My patience is wearing thin lately and as a result I am more anxious then I would like to admit. I don’t do anxious well either. “Just Breathe” is my motto. But I resent it, and often forget too. It should be natural. I should be content with whatever happens by this stage in my life. Or at least willing to go with it…… Sometimes I am stronger than I am right now. Why can’t that be my mindset every day? Recently one of my sisters sent me a text and apologized for my recent admission to needing a wheelchair to live a better life. She then asked whether it might be time for me to think about an Assisted Living place. I wanted to scream at her and ask why she would even think that? But I restrained even answering her right away and instead sat in quiet reflection and a puddle of tears. Why does the truth hurt so much? But all I could think was…. “Out to Pasture. No one wants to help or deal with her. Time to stick her in an out of the way place and let nature take it’s course.” That’s all I could hear. Each day I have to assess my energy and pain and what allowance I have to spend to make it through. That is true. I have lt look at my future commitments, which are few. I check the weather and my bank account daily. Sometimes multiple times. Defaulting to companionship online to break up obsessing about how mundane and boring my life is. I am stuck in a groundhogs day repeat cycle. When I was watching the news today and they were discussing planting times and Memorial day sales I thought, “See….we live for predictability and stability. We rinse and repeat hoping to get a different result.” The only thing that ever changes is our slow decent decomposition, and our place in the pile. I try not to think about it, but it kind of smacks you in the face every now and again. So written below is something I wrote in a group of us who all have Ehlers Danlos Syndrome. I was having a bit of a pity party with myself this morning because I woke up in a huge amount of pain and stiffness. I was feeling pretty good last night and had made plans to be productive today. It could still happen….. But with the pain often comes anxiety and depressed feelings. Any way……read below. That chat was with another one of my sisters that I refer too.
Patience has never been easy for me…..Lately I feel like they are being constantly tested and I am trying so hard to be open to it. But I am failing miserably. Today’s pain and stiffness is off the charts and I am so done. I also had a chat with one of my sisters the other day, and some harsh realities were spoken. Tomorrow I am suppose to do something with her and I am afraid I will once again prove to her that I am so not worth anyone’s time to ever make plans with. Part of the convo was about how I never feel good, so that’s why no one asks me to do anything. My response was…. “true, but that doesn’t mean that I don’t want or need human interaction, and it’s not like I can help it, my body sucks and I do the best I can, all I want now and again is company and I am sorry if it’s a bit lack luster because I can’t keep up. Maybe others need to slow down a bit.” She really didn’t know how to respond to that. Maybe the truth hurts where that’s concerned. Anyway, I am sure plenty of you know exactly what I mean. You can only cover up pain and exhaustion so much. Balancing this life of isolation is a reality check for me. I am beginning to think that the only way I can mentally stay sane at this point is to explore assisted living. That way at least I would have some sort of companionship at easy reach when I am able to interact. Sometimes it’s just nice to watch a movie or show with someone and have a conversation over a meal afterwards. I fucking miss that more than anything.
My current lease is for another 15 months and a wheelchair is in the works. Maybe that will help with a lot of things. So here I am, waiting, and trying to be “patient.” Did I mention that I don’t do that very well?
I have had to learn to make tentative plans and look forward to them in order to stay somewhat sane. Little goals. I miss my able body and hiking and exploring. Gardening, and being with other people. I was recently let down by a friend who told me that he needed someone who was more independent as a partner. Perhaps younger. Man did that sting. Especially since I lost my ex to just that. I told him that that was sad. That’s all I could say. I ended our convo and I haven’t talked to him since. Now the “ghosting” has begun. Awkward happened and it will never be the same. I don’t consider myself necessarily needy. I just need help now and then. I don’t ask or require much either. But the messages I keep getting say otherwise.
Maybe it is time……It’s a hard pill to swallow.
I need to add this as well…..a response to a group member about it all.
Yes…the restlessness to be useful or productive. I just wish I had the energy and will to be that. Brain is a hot mess of confusion.