guilt, fear and volunteering

Somehow I've gotten myself in the position that I am the team parent for my daughter's softball team. Okay, I know how I got myself into this position. It's because I feel guilty all the time for not being able to do all the stuff that other parents do and they needed a team parent and no one was volunteering and...... Here we are. Most of it is just online stuff sending out messages to all the parents, keeping everything organized, streaming the games on the app on game days. So, so far I'm fine. 

It actually makes me wish I could do things like this more often, but it also makes me realize that unless things are within specific parameters, like everything being online that I can do from my phone while I'm in bed, I can't commit to it. I'm currently sitting here staring at a sign up genius page for my son's Country Fair at school trying to figure out how I'm going to feel on Friday at a specific time to see if I will be able to volunteer. And if you're thinking "well, how are you possibly supposed to know how you're feeling on Friday?" That is exactly the point. I want to volunteer, I want to help at his school, I really actually enjoy helping at their schools and for their sports teams, but when I have to plan in advance and commit to something, it's terrifying for me. I'm not complaining right now, so much as just saying that it's unnecessarily scary to be asked to commit to something in the future. And I don't think that that's necessarily something people think about in terms of chronic illness. People are very understanding with me about things I can't do in the present moment, or things that I just know I cant do now or in the future, but when I say things like I don't know, or I have to tell you that day, then they don't quite get it. They try, I'm not complaining at all about any of my friends or any of my children's organizations because everyone has been just unbelievably helpful and caring when I tell them my circumstances, but the fear of letting people down is my point here. I think. I'm never really sure what my point is, but today I think it is the fear of letting people down. I have this tremendous guilt of not being able to do these things, but I also have this tremendous fear of committing to things and letting people down. Which is worse? Can I have secret option 3? 

tossin paint

So, some of you probably know this but one of my absolute favorite things to do is home improvement. I love design, I love making a space look prettier and nicer or making it more functional. I love challenging myself to fix things myself in my house rather than hiring or asking someone to do it for me. It is literally one of my happy times. Now because my body is such a failure at everything it takes me a really long time to get these things finished but I'm determined to still do them because they bring me so much happiness. So today.... I'm trying to paint the living room and I've already spent 3 days working on it because I have to work in short shifts before my body gives out. Today I think I may have pushed it a little too far and my hand stooped working while I was holding a bowl of paint. You can probably imagine what happened next. There was paint on the wall, the baseboards, the floor, the chair, literally everywhere. And of course it's not the part of the wall that I was trying to paint but the part of the wall that I had just wallpapered a couple weeks ago. 

This is another thing these illnesses are slowly stealing from me. I realized last week when I was painting that edges are particularly challenging for me know when I used to be really good at them because my body randomly skates and spasms, including my hands and arms. That made me kind of sad but I figured i could at least still paint the room I just needed to make some changes to how I do edges. Today i was so play golding the paint.... I cannot imagine never being able to paint a room again. That would be devastating to me. And I know for a lot of you out there that may seem melodramatic or strange or silly, but I truly love this kind of thing, and I truly love being independent and strong enough to do these things myself. So, the fact that my illnesses are slowly taking away something else that I absolutely love is just pissing me off. There's no nice way to put it. I can't see a silver lining on this one. It's just pissing me off. It just sucks. I've already given in to the fact that it'll take me weeks to paint one room when I used to be able to do it in a day or two, I've already given in to the fact that I have to take breaks regularly when I'm doing any sort of home improvement, I've already given in to the fact that I need to make sure that I eat properly and have snacks and drinks, and i need to make sure I have everything I will need because going up and down ladders and step stools will cut short the amount of time I'm able to work. And I've already given in to the fact that there's some stuff that I really need help with, things I used to do by myself I now need someone's help with. But, I am not willing to give up completely. I'm not willing to just throw in the towel and never do something that I love again. I've had to do that with too many things with these illnesses.

How many more things will this damn body take from me before I even hit 50 yrs old?!