I sometimes wonder what my life would feel like if my brain bleed had been in another part of my brain. If it had affected my motor functioning, or my speech. Things that were easily seen by others and made it easier to understand. There is so much going on for me that is unseen, and if you meet me and we talk, you would never know that there is anything wrong with. I am sure that my neighbours wonder why I don't work, I actually had a dream (that I remembered!) where a neighbour asked my husband why I was so lazy. Not only for other people but also for me, I forget. I forget the severity of it and expect more from myself, or get disappointed in myself for having a day of extreme fatigue. I have had doctors act surprised when I say that I still get exhausted easily. And yet all the people in I have "talked" to with hemianopia (the resulting condition from my brain bleed) say that they experience exactly the same thing and that you eventually sort of get used to the tired. I am not entirely sure that I will get used to it.
I want to talk about the things I still deal with almost daily over 2 and half years after, and likely will it seems for the rest of my life. Here are 10 things that I still think about, or deal with on a daily basis:
Doing things/going places alone. Before the pandemic 2020 was going to the be the year that I worked on my independence. Not so much. I used to pride myself in my independence. Now the thought of going any place unfamiliar alone is enough to start the anxiety at full steam. This morning I went to get blood work done all by myself. Here are the things I worried about: What door do I go in? What if I get lost when they give you directions to the rooms, and I have to find my way out again? What if I am late cause I couldn't find the right door? What if I am too early because I gave myself extra time in case I got lost? All ridiculous. Easy solution things. But I catch myself going through all the possible scenarios and have to stop thinking. Focus on the breath nothing else.
Boring People. I talk about my brain bleed. A lot. I know I do. I worry that people are thinking "why is she still talking about his all the time?". I sometimes do it so that if I maybe do something that seems strange that they understand there is a reason (like get lost on the way back from the bathroom, or walk into something that was clearly there). Sometimes I talk about it because it is the most interesting thing about me, honestly it is a good story. Sometimes I talk about it because it is still on my mind. All the time. I am still working through what happened, how to move forward and what is next. It is the lens through which I see (half) of the world. I know it must get boring and repetitive and I'm sorry if I have made you feel that way. But I am probably going to keep talking about it.
Anxiety. Before when I would get anxious it was usually because of what I was thinking about. There was a fairly easy solution, notice your thoughts and and come back to the breath. Mediation was enough to calm me and help me move on. Now it is the opposite scenario. The feeling comes first and it whispers to me to "look out" or "somethings wrong". When everything is okay. I can't shake the feeling of the time I couldn't find my way around. Although I haven't gotten lost anywhere in a long time, that feeling of being confused by everything, and needing help just to get 10 feet is with me all the time. I don't think I will ever forget it, and although I don't remember much from that time, that feeling, the helplessness I remember.
Being In Public. When I have to go out, even if it is just for a walk, I have to be in a "ready for action" sort of state. There is no going for a walk and just relaxing and getting lost in my thoughts. I concentrate hard, thinking about how I am scanning, to make sure I am safe and not going to be hit by a car or cyclist. I am making sure I am not in someone's way. Walking through the off leash park is super hard because dogs don't follow our rules about how and where to walk around people. They are unpredictable. Current strategy is to stand still say hello, and wait for them to move on. I have had two different owners ask if I am afraid of dogs, and I tell them about my condition (see point 2). Going to stores is hard work, planning transit if I am taking it can cause me stress. Things that I used to take for granted. Still haven't really gone to a mall alone. I've done almost all of the shopping I need to if it isn't within walking distance online. I suppose the one silver lining to the pandemic is lots of local stores do delivery now and that has really helped.
The goddamn fatigue. Every time I think I am starting to get a handle on it, and might have a way to mitigate and predict it, I am caught by surprise. It gets old. Quick.
Frustration with the rest of the world. Now it is never with one person specifically. It is usually a "vibe". Like I get frustrated with posts I see about goal setting and achieving your dreams, and forwarding your career. I have spent almost 3 years trying to let go of my attachment to all those ideas, and learn to be in the present moment. When your goal setting looks like "don't set goals and be open to all possibilities" the constant pressure to improve and move forward gets old. When people talk about things "returning to normal" post pandemic, I want to whimper, my normal hasn't really changed much.
Always waiting for insurance to decide that I should go back to work. Messages from my doctor and my husband have got me convinced that at any point my long term disability will be revoked. Like any step I make forward will result in my stability being taken away. So balancing this "constant growth" mentality with "if you improve you will need to find a way to work" is a state of constant conflict and stress.
The things we used to do to relax and unwind are now work. Things like watching movies, going or drives... I am having to develop a whole new tool box of things to do that I enjoy and don't tax me.
I often feel like a burden. Expecting my family to take me places, change things to accommodate my anxiety and fatigue, and not being able to take care of people the way I used to, is hard. It is a learning curve for all of us. But somedays it feels heavy.
Lastly, what is next? This has been the hardest thing lately. I'm settling in on the idea of karma yoga, which is this idea of doing the work with no attachment to the outcome. So taking my meditation teacher training without the real desire to teach meditation with it. And being okay with that. Then explaining that to others over and over because it is hard to understand that I am okay with not working or doing it. I just wanted to learn it.
Not so much about yoga philosophy this time, more about me. And I established that I like to talk about myself. Well, it is time for a nap I think. It was been a busy day. And it is barely afternoon.
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