In my last post, I said this move has taught me a lot about myself and the state of the world! This post is about what I learned about myself.
I am one of 26% of adults in the US who has a disability.
This may seem like an odd thing to have just realized given the events of the last year. But I will explain. Until six weeks ago, I did not think about my limitations. I thought I was Wonder Woman who could do anything. I understood that some things were more challenging but I did not think about those things. I just kept moving forward, pushing through, and making adjustments as necessary. I did not really think about having a disability until a few months ago when I need to apply for ADA accommodations at work. However, while I am eligible for ADA accommodations, I did not identify as a person with a disability. There is a difference between being something and identifying with it. This move helped me with the identification.
About six weeks ago, I made the decision to move. I started to plan the move and it was challenging and exhausting. I planned to pack a few things and then hire professional movers to pack the majority. I had people come out to give me estimates and I could barely walk them around the house to show them what needed to be done and answer questions.
I was shocked by the sticker price of this endeavor so I thought I could pack more items that I originally planned to; however, as I started doing it, I realized quickly I didn't have it in me. I would pack one or two boxes and then I was so exhausted, I just couldn't do any more.
Then came packing and moving day. I didn't have it in me to direct the move. Being that this is my thirtieth move, I know how to pack and move my belongings. I have a lot of stuff but when done intentionally, it is manageable. Since I could not direct this move, I opted to work during the move. This was a good coping strategy because it distracted me from questioning the decisions of my packers. Like, why are not finishing one room before you move to the next? Why did not not start with my front room so you could use it as a staging area?
Going into day two, I wondered....Why are you not packing the truck organized by room or items? Why did not bring enough boxes to pack my stuff? Why are you leaving early when there is so much to get done? Why did you leave so much stuff behind? It was so overwhelming to have no control over the work and no one was listening to me.
Then I got to my new house and found the AC not working and the house less clean than I would prefer it. The layout of my new house requires me to walk further to answer the front door, go to the rest room, or the kitchen. This was surprising to me how much I felt this distance. Also, the first day since my stuff was not here yet, I had to sit either on the floor or a regular chair as well as sleep on the floor. While I could have stayed at my mom's house, I did not want to leave my cats. That being said, I could feel the effects of sleeping/sitting on the floor in my tailbone. I have lost so much weight that my padding is reduced. I know that does not seem like a bad thing but it physically hurts and mentally is a sign of being sick to me. It reminds me of when I was a kid. Sitting in a regular chair all day was a struggle on my breathing. I was short of breath all day, which after a few hours was exhausting.
Then my stuff arrived. The movers were great about allowing me to point and tell them where to put things because they understood my limitations and could see me struggling with breathing. As they were unpacking the truck, the house became more overwhelming. stuff was everywhere and I could not physically move anything. My mom and my friends had to do everything I needed done.
As things were being unpacked and put away, I realized more limitations. Everyone wants to help, which I am so appreciative of and will forever be indebted. But it makes me sad. I love moving to a new house and figuring out why my awesome stuff will go and be organized. I just do not have the energy to be fully involved. At this point, I am having stuff put on shelves that I know will have to be re-organized when it is all on the shelf because I was not able to pack and label boxes in the way the items need to be put away. Where I would put things is not where others think they go. Things are not done on my schedule because I have to rely on others. In previous moves, I could stay up all night putting things away and getting organized. Now, I look at things and think I can do it but then when I try (if I even make it that far), I get tired pretty quickly.
While I have always been able to handle stress, with my adrenal gland insufficiency, I physically feel any stress. This is something new I have had to get used to because prior to the adrenal glands failing, I barely knew I was stressed.
I have been in my house two weeks. We are making progress and it will get there. I talked to my palliative care doctor and psychologist this week about coming to this realization. We talked about how I have gone from 20-hours a week , 7 days a week to a normal person. I sleep now (not all at one time but throughout the night)! I am accepting my new normal but mourning the loss of my old robot, racoon life. At times, I feel useless because I cannot do simple things and need so much help. This is something I am working through.
The CDC defines disability any condition of the body or mind (impairment) that makes it more difficult for the person with the condition to do certain activities (activity limitation) and interact with the world around them (participation restrictions). Given this definition, I am definitely a person with a disability. While visually I look healthy and have strong cognitive skills, I do have limitations. I can no longer manage my entire domestic life on my own, like driving, running errands, cleaning, taking the trash out, getting the mail, and going to the doctors or store. Additionally, my mobility is significantly limited so walking or climbing stairs is very challenging. My breathing is compromised, which impacts my mobility and independent living.
I am blessed because with accommodations I can still engage in work, social interactions, and civic life. I can , and make all my own decisions. I am still able to learn and teach others, which I see as my purpose in life. I still have strong problem solving skills and can manage tasks and the demands on my life. I am more accepting of help and willing to ask for it, which is progress. I am listening to my body and trying not to over do it. I am proud of myself for embracing my diagnosis, understanding the realities of my diseases, and finding a way to still contribute to the world around me in a meaningful way through relationships and contributions. This is not an easy journey to be on at any age but selfishly I will say at 46 seems unfair but as I learned very early on in life, no one said it would be fair or easy. We all just need to make the best of every day, which is what I try to do. That doesn't mean that at times I don't feel sorry for myself, wallow in self-pity, or get frustrated but I try to limit these times and focus on the positives.
In other news, the cats are coming around and are less traumatized!
For tonight . . . I'm just sayin' XOXO
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