"I don’t always know when they’ll arrive, or how long they’ll stay. Pushing myself results in physical pain from fatigue or feeling like my skull is empty and just holding conversation is difficult.
It isn’t that I don’t want to do all of the things but I actually can’t. If you are finding it difficult to adjust to my new lifestyle, please remember I didn’t choose it. It isn’t something I want, however it’s something I have to work with.
I’m feeling like I’m being left behind (which I think is a common for people with chronic illness) and thats a really motherfucking shitty feeling, but I am just about done with getting heartbroken when friends repeatedly prove they don’t get it at all.
Yes, I look healthy and the same as i did before. No, I’m not always in pain. Yes, sometimes fatigue can come on in a matter of minutes. I mentally live a week in advance so I can plan out my energy, and even then it doesn’t always work out how I want. That makes me angry, and it makes me upset.
You don’t get to see that side of me declining invites. The side where I have to consider the fact that just getting to the house/gig/lunch might leave me so tired that it isn’t worth going. Or the part where I’m sat at home wishing that I didn’t have to consider something important on Thursday when planning my Saturday night.
Not being able to go to things stings a lot, not being invited stings even more.
I don’t know where this is going anymore. I’m sure I had a point, at some point.
Basically, I feel like I got some perspective today. About what’s important. I’m still trying to separate getting older and getting bitter but I guess sometimes they come hand in hand."
This. I get this. Ok, it sounds bad. I don't have that feeling of being left out so much as Kelly does. I don't have that heartbreaking feeling. I do, however, feel like I have to pick and choose what I do and that I'm a constant let down when I have to cancel plans all the time, avoid doing things (sorry friends - sometimes I avoid your calls and texts because I'm too embarrassed and sad to decline YET AGAIN), and say no to doing things because it's too far away from my house. This town doesn't have reliable transit, and I can't be spending as much money as I would like on cabs. Sometimes I feel fine when I go out, but if it gets too loud I get confused and feel really sick and need to go home immediately. I feel guilty for asking someone to take me home, so I avoid the whole thing and just don't even bother. I've sat at home more nights than I can remember crying because I miss what my life was a year ago so much. It's hard to let these feelings out sometimes. It's really hard to have to make excuses for why I can't make it out. Tonight, for example, I was so excited to be going out. A restaurant across the street and a pub for kareoke which is just down the road. After a venue change my day changed. The new venue is across town, and I don't have that easy access to home that I need. So I won't be going (Sorry Michelle! And Crystal! And Nicole! And everyone else I told I was going out tonight! I suck!) because I don't know how I'll feel later and I don't want to pay a $70 in cabs. It's not worth it. I mean, going and seeing my friends is worth it, but if I feel like ass after half an hour and need to come home it won't be. (Are we with me? Great) It's frustrating to say the same thing over and over and over again, and if one more person says "Well, if you drove it wouldn't be a problem" I will hit you really hard no matter how much I love you...because that's ignorant. So, I don't really know what I'm trying to say. It's hard. I want to participate. I want to go out. I want to see my friends and meet new people and be social. I just don't know how to do that when I have no way home and I get overwhelmed easily and I'm sensitive to new things. These are my issues, I know, but it's just very difficult. So, I guess, I don't know. I don't know how to say this without sounding like a total douchey asshole. Dear friends, It's important that I still get to see you and go out with y'all. It is. If you invite me to something, pretty please try to remember my new normal, and some of my new limitations and how quickly I can go from feeling ok to really NOT feeling ok. It's frustrating, I understand. You are all so great and always ask how you can help, or if you can, so I ask you this: Please think about accessibility when we're going somewhere. If you invite me out somewhere, think how can she get there? How can she get home? Will it be loud? Are there lots of stairs? How are her legs today? I know it's asking a lot. Trust me. I've had a really hard time writing this post because I feel like such a jerk asking these things. But - for those of you (and there are plenty) that have asked, this is what you can do.
Please don't take offense to any of this, I really just needed to get this off my chest, and it definitely doesn't apply to 100% of the time, just sometimes, and now I'm making excuses for my feelings and blah blah blah.