Newly diagnosed on 5/10/2022

[KimT]

Just wanted to write a word of encouragement to Joanna and Aaron. I've been through the second opinion. I've been through a third and fourth opinion. It is exhausting and I'm glad you have a place to express yourself, vent, and ask questions.

So post as much as you need. I and others are here to support you.

 

[NekoiStar]

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

 

[KimT]

Joanna,

I think you wrote how many of us feel, both with ALS and without it.

I'm not sure how I lost so many friends but, after my diagnosis, that's exactly what happened. Maybe I didn't communicate to them properly. Maybe ALS was just too much for them to handle. I do know my relatives have very little communication with me and it is their choice. I suspect it has something to do with my being a piggy bank for them for so long and now that it's dried up, they have no use for me. How's that for cynical?

On the other hand, I devoted much time and energy into my career at the expense of cultivating strong friendships. I had friends but figured, after retirement, I'd have more time for them. I also started taking care of my brother who is 20 years older and that cut into my other friendships. He's now in a VA nursing home.

I think the pandemic scared all of us.....at least those of us who had common sense. Going on three years of not seeing the inside of a restaurant or having close gatherings with friends took its toll on me.

I do think if it were not for Remeron, I'd have given up a couple of years ago. It does a good job of numbing me out.

Lately, most of my relationships are online and that's a sad way to live. I don't have a CALS but do have a housemate who can, at least, share the expense of this disease.

If you ever need someone who cares and someone to write to just message me and I'll give you my email address.

Kim