Hello again,
I have this horrible habit, of isolating myself when I'm sick or unwell. This normally doesn't extend for very long outside of the sickness, anxiety, or depression I'm experiencing for a few days, a week or two at most. I've always expressed that I'm an introverted person, but in truth ,I'm an extroverted person who just has a bad immune system and get sick easily so I withdraw a lot to deal with not feeling well.
The issue is that with ALS... I'm almost always in a state of not feeling well in some form or another. As the days pass, weeks turn into months, and this disease progresses. I should be grateful that it seems to be moving slowly... I haven't entirely lost any ability yet, just everything with my mouth, arms, and hands, is slower. I might be one of those people who get lucky and this disease takes years before it fully robs anything away from me, or it could just strike suddenly and I lose a lot at once.
The real issue comes with how I'm treating it in myself, like when I get sick, I isolate myself, and what's really bad is that it stretches for weeks or even months before I actually interact with others on a deeper level and that crushes me as a person. Even before ALS, COVID did a wonderful job of making me scared to go out with friends or even family, as I didn't want to get sick with it and bring it back home to those I love.
Most days I just sit here, in front of my computer, watching movies, gaming streams, or reading, and it's peaceful, but I crave that contact with people. The issue is that I have isolated myself for so long that I get super emotional when I do so and that just makes everyone uncomfortable. This may or may not be in part due to what is called PBA with can accompany ALS, which can cause not just uncontrollable crying/laughter/anger it can also cause emotions to stir up a lot more easily than normal as well.
I have people I love so much and I fear that they think they can do nothing for me, and it's the opposite, I need them so badly and I'm trying my hardest to beat out such a horrible habit in me so I can live whatever time I do have left to it's fullest.
I'm so sorry if I've hurt anyone, or made them feel this way ever, know it's not a slight against you, it's just a survival habit I've built up over my life and it's one that I hope I can learn to get underhand eventually so I can enjoy life and be happy, because as things stand, I'm not very happy, despite the wonderful friends, family, love, and support I do have.
I do hope to have this under control eventually, until then am so sorry you have to see me in such a pitiful shape, it's not how I want those I care for to see me as. I forever want to be that person who stands up for others, who helps others smile and shine love where it normally wouldn't.
Just in truth, I haven't been very happy with who I am and how I've been behaving the last few years, and that stretches even until now.
Thank you for taking the time to read this.
- Joanna