My Limitations Are Up to Me!
Last updated: October 2023
I feel like I’ve had to go back into self-advocating for myself once more. It is not that I ever quit sticking up for myself, but I started to let people make me feel guilty for having limits due to my narcolepsy. I have good days and start to do tasks I have been putting off, and apparently it appears that I am magically cured!
The fear of having a cataplexy attack in public
You cannot imagine the feelings that happen when you have a cataplexy attack in public. There are a lot of the same fears and feelings about having a cataplexy attack in the privacy of our own home, but having one in public is a whole different story. Not only is it unsafe, but it is also humiliating, and people do not know what to do when you are on the ground, paralyzed. It petrifies me to worry about a stranger doing CPR on me when I do not need it.
People around me cannot see how much I worry about this happening. It is an internal stress, and I do not talk about it on a regular basis. Cataplexy happens when it happens, and all I can do is avoid triggers. I also try not to go out of the house without my husband. I try to stay close to home and get the things I need for the week so I do not need to make multiple trips to stores.
Only I dictate what my limits are
It is very hurtful when people close to you get used to your limits and still expect more. I always try to keep up and fulfill others’ expectations, even when it affects my health.
It was suggested that I try to start working outside of the home again. I need to take my own advice and speak up and just say no. I cannot allow someone to dictate to me what my limits SHOULD be.
Not being able to hold down a full-time job is a very frustrating feeling. If only I could just delete this narcolepsy from my life! I wish it was that easy, but unfortunately, there is no cure. We can only treat it and change our lifestyle to one that alleviates symptoms.
Experiencing symptoms in public is a valid concern
It has taken years of figuring out how to control my emotions. I must keep myself on a low level of anxiety to avoid triggering my cataplexy. This has meant years of practicing my skills at keeping calm, cool, and collected. I have not been in a work setting for many years, and the roller coaster of the day combined with emotions can be a recipe for disaster for me.
I’ve been diagnosed for many years now and have been living with narcolepsy since I was a child. I know what I should do and what I shouldn’t do! I feel being in a protected environment, such as my home, gives the impression I do not have narcolepsy as bad as I do. The assumption that my sleep attacks, cataplexy, hallucinations, and dreaming with my eyes open won’t happen in public is wishful thinking. Being out in a public setting can be very challenging. It is a legitimate concern and I had hoped it would be to others as well.
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