Life Log

Catching up on my Reading Page again. 

Things have calmed down at home for a little while, and now my parents are almost "getting along." And that scares me. Turns out they're not getting the divorce now, so this whole process of things being "fine" and suddenly chaotic (which spins out and affects other people) is going to repeat itself. It seems like it's continuing to get worse, too, but sometimes things get worse before they get better? ...Yeah, I doubt that's the case here, though I can't predict too much with the observation of it getting worse. 

Agh, now I have that restless depressed feeling and don't know what to do about it. 

Michael just went to his internship. Today is the lab work day. Last time he spent it dealing with liquid (for DNA I think) and labeling vials. I'm assuming today won't be much different. Before he left, we watched a couple more episodes of Steven Universe, and WOW, I keep forgetting how comforting that show is. Watching it for me is kind of like being reborn and forgetting a bunch of social norms I barely knew I had. It's hard to explain.

My face is breaking out again, and this began soon after I stopped taking the low-dose antibiotic. My dermatologist thought that at least some of my facial skin problems were related to the MCAS, especially because my skin appears to be doing a thing that involves cells that closely interact with mast cells (or something). I forgot the name of the condition, but it involves continued flushing. My doctor prescribed the low-dose antibiotics because not only does it help with my specific skin issues; he's also seen research on it improving MCAS symptoms. I'm bad at noticing changes in symptoms, so it's hard to tell if stopping it did anything that isn't skin related, but I have been getting more bad headaches lately... I'll try to keep that in mind.

Wow, I usually wouldn't be saying this after being kind of inactive on DW for this amount of time, but a lot has happened over the past... *checks date of last entry* two weeks. Here I am already stressing over how to word things. Plus my hands are apparently really shaky today, sol typing to begin with is a challenge. My "editing" (even though I try not to care about that on here anyway) can be fixing all these typos. 

I've actually been here silently trying to catch up on people's posts. Today, I finally read (or skimmed or skipped posts about things I wasn't familiar with enough to understand) through everything, and I'm back at the front of my reading page. My next step, because my brain gets angry at me for not doing things in a specific order, is to go through and hopefully finish responding to comments. I don't know why they scare me so much. Actually, while going through my reading page, I found several posts that I felt like I could comment on!!! What happened? With the amount of time and energy it'd probably take, and all the other things I've been trying to get done, I put it off for the time being. Just thought I'd say that in cause it meant anything to anyone.

For some reason, I'm allowed to write this in the middle of the reading/responding to comments process. Just want everyone to know that I want to and will (unless something new stops me) at least read all of them. 

Anyway, yeah, things have been busy. And at the same time, there is never enough going on. I'm still in recovery from getting a C1-C2 fusion along with a bone being removed to aid the infusion and allow spinal fluid to drain more easily. (There was a name for the second part, but it's really long and never sticks in my head... unlike the spinal fluid.) Then I've been spending a lot of time either zoning out (more than usual) because it's the time of the year when my FP, who is also my partner, has to spend a lot of time away. The hardest part of that for me is him going on the yearly beach trip with his family and some old friends. Yes, I'm aware that none of that makes sense. In the waiting period after the surgery and before the beach trip, I've been sleeping, obsessively getting into phone games (it's been a while), and trying to catch up with what people have posted online. 

( Wayyy too many words about my surgery and post-surgery experiences )

There's been a lot going on for me lately, so prepare for more negative posts than usual (not that I have many posts on here anyway). I spend a lot of time trying not to process negative thoughts, and when I write on here, I can kind of touch the surface of doing that. Maybe I'll be able to talk about more difficult subjects in the future.

What's been going on? To be honest, it takes a while for me to fish it out of my brain. I'll try to list some things.

1. Spine/brain surgery. This one hasn't affected me too much, possibly because I disconnect from so many things and can't tell what I'm feeling until it gets bad (ooops...). The thing I'm most worried about has to be the recovery time. I don't know if I can handle being even more stuck in the house mentally. 
2. Possibly moving to New Mexico. Almost forgot about this one. The plan is to move by next fall. Don't get me wrong. I love traveling and spending time in different places, but I have some pretty bad experiences with moving that aren't directly related to the move itself. It's complicated and a scary subject for me.
3.  My FP might have to go on a beach trip with some old friends. This is probably the scariest thing for me even though it sounds like nothing. It's happened before, but my brain seems to delete memories like that. I'm scared of my paranoid ideas finally being proved as true, and I'm scared of entering a rage due to finding something like that out. It doesn't sound reasonable, but talking me out of it won't help. If anything, it'll probably make me more suspicious of you. I'm trying to work through this and improve.
4. Family drama. I'm not going to publically go into detail, but there's been a lot of chaos in my family lately. Recently, I found out that it's a bigger deal than I thought. Overall, it adds to all the confusion and makes it harder to trust anyone's perceptions, including mine.

And that's what came to mind (on top of the usual difficulties). I don't know what I'm going to do right now. This was written to try to express and organize my thoughts by the way. No need for commenting or anything. 

It’s really hard to handle this emptiness, and I end up getting really uneasy, anxious, and in need of a lot going on around me. Although going to my partner’s house can really help, I often feel trapped in a silent and stagnant place without an easily-accessible way to get rid of the feeling. It’s basically that stuck-in-an-empty-room feeling. Leaving the house can help a little, though I’ve been physically crashing very easily lately. So there opens the thin line between balancing my physical and emotional health.

Tonight I came up with an idea: Maybe there are free-to-use wheelchairs in the mall near his house. Being in a crowded and noisy environment is enough to make me feel bad the next day, but maybe if I conserve energy by not walking as much, I won’t feel as bad.

Problem is... I’m really scared of using a wheelchair while I can walk. There are so many stories about people getting insulted/harassed for using a wheelchair when they “don’t need it.” Plus, since wheeling myself around in one might be worse for my joints than walking (which is probably worse for fatigue/other symptoms), I’d probably have to rely on my partner to push me around. I really don’t want him to have to deal with that... even if he says he’s fine with it. I don’t even know if a wheelchair would help that much, and the guilt would probably be overwhelming. Basically, I really don’t know if it’d worth it.

We’ll see what happens.

Originally posted on Tumblr.

Day #29: What has helped you cope with the stress of this lifestyle?

I'll list a few things that come to mind. 

-My cats. They've always given me a reason to keep going, and they're really good at comforting me. It's also nice that they'll come to visit me when I'm lying down when I don't have people who can/will. 

-My partner. I've never been as comfortable around anyone else. He knows me really well, and we've been through some tough times together I didn't think we'd make it through. He's stuck around when he probably should have left. Several years later, he's still with me and understands the whole chronic illness thing surprisingly well. 

-My mom. We usually don't get along too well, and things can be chaotic between us, but she lives with many of the same illnesses. I learn a lot from her, and she plans a lot of my appointments for me because I can't get myself to talk to people. This lifestyle would've been much harder without her.

-Coffee. It seems to help with my pain and therefore makes me more functional.

-Online communities. Knowing others who also live with chronic illness can be comforting and can help me have lower expectations of myself. 

-Food that's easy to get and eat. Do I really have to explain this one?