I keep myself busy. I think it’s good for my emotional well being and overall quality of life to be active, to feel I have a purpose. It’s very important to me that my family is left with something meaningful. A piece of jewelry, or a memorable household item is nice but I also want them to have an easy to store, easy to access, message from me that they can see whenever they want. I’m making something they can all share together after my death. It’s individual messages and more. I’m writing this blog in the hope others with ALS, caregivers or anyone will find it helpful, and it does keep people in my life updated. It also keeps people I don’t want to be updated in the loop, but I’ve already come to terms and accepted a certain amount of privacy is part of the trade off when blogging.
It’s also an outlet for me. I get out feelings I normally wouldn’t by talking. It can be stressful at times. I’m dedicated to it and I don’t like to miss goals or deadlines I have set for myself. Sometimes my blog goals light a fire under me and I’m happy, other times I’m stressed and disappointed in myself. Sounds pretty normal to me. Ultimately it gives me motivation and the feeling of living. When I’m busy in this mode I can discuss ALS like one might an annoying hangnail, sometimes to the discomfort of others.
Today is one of those days that isn’t going as planned. I just found out I’m off on days and I have to plan other things. I’m frustrated at the things I can’t do on my own. I’m scared of the things I won’t be able to do as I progress and how that will be dealt with. By keeping myself busy, this all goes to the end of the list of things to worry about. ALS will eventually demand attention, the narcissistic piece of shit that it is will make it through my barriers to the forefront of my thoughts on it’s own terms. This is when it’s the hardest to push it back. It demands attention. These times I often regretfully become irritable and short with Tony. I may point out things he’s doing wrong, which hurts his feelings and depending on where ALS is in his mind it has great potential for an argument.
That’s where this day was headed, but I stopped myself. Today, I cried. I just let my feelings lead. I let myself feel the fear, anger, frustration and helplessness. I didn’t fight it, push it back to the end. I let the cry come from the deepest parts of me that even I rarely acknowledge myself. I did this alone. Just me and ALS. I did this for about ten minutes. It was scary and painful to think and feel the fear of what ALS is bringing to me and my family. The anger at how this has changed the rhythm and plans we had going. The pain it’s causing my family and will only get worse.
When I stopped, I felt a weight lifted. I’m not one to cry easily. I don’t know why I avoid crying so much. It doesn’t bother me at all for someone else to cry, within reason. When it comes to me, I fight it. I think of something else. I avoid the feelings causing it. I’m really admitting this to myself as I’m telling it to you, my readers. I’ve learned another coping skill. It’s not something I want to do every day, but I think I should incorporate it in as needed. My goal is to allow myself to cry occasionally. A good hard cry.
I hate to ruin a positive vibe, but to be honest, this brings a new fear. I stopped my crying a little short because my nose was congested and I started feeling short of breath. It makes me think of later down the road when I need my vent all the time. How will I handle that? Will I have to work harder to not feel the pain. Will there be a breathing crisis? I’m not going to think of that now.
I’m stopping here and I’m staying here, with what I’m dealing with right now. I’m going to allow myself to feel proud for what I did. Today, I cried. I mean cried, and I felt better.
Until next time, take care,
This article was written by April