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Still Sick, Still Living Well

I've been mulling over a polite way to talk about something that really distresses me: the assumption that just because I'm open about my chronic illness and because I stay home instead of having a "real job" my life is somehow less fulfilling or sad or that I'm just laying around on the couch all day eating bonbons and whining about my joints.

These are all things I've heard in some form from strangers, yes, but also from family and friends -- thankfully, those I'm close to fall more into the concern category than the accusations of laziness, so in a way I'm grateful that they're worried about me, but regardless of their intent, it basically invalidates all of my small victories that I do accomplish.

In general, I am extremely content with my life, even if it has deviated from the norm a bit more than I ever accounted for. Sometimes I feel like maybe there's something brutally wrong with me because of that. People are telling me "oh, you poor dear, why don't you get out and do x, y, and z to make up for it?" and I'm just sitting back blinking my eyes thinking "But I wouldn't want to do those things even if I were healthy." If others look at my life and walk away dissatisfied, does that mean that I am in the wrong for being satisfied while living it?

For example, the gym. Oh God, let's talk about the gym. Look, I know that eating right and staying active and all of that fitness stuff is important. It doesn't change the fact that I hate working out. I have hated working out since I was little, I have hated working out since before I started developing Sjogren's symptoms, and I sure as heck hate it now that sometimes just walking across the living room is enough to make me double over in pain. On occasions where I'm feeling pretty good, I'll do some yoga as a way of keeping my mobility up and centering my brain. That's... pretty much it. Oodles of respect to those out there who feel that certain "high" I keep hearing about whenever they go to the gym, but I just don't feel it, and I never have.

Unrelated to my illness is the simple fact that I am an introvert. Even without the complex PTSD, even without the depression, I find being surrounded by tons of people and noise and other sensory stimuli confusing and exhausting. So yes, if you invite me out to a club or to hang out with a big group, I'm probably going to say thanks, but no thanks. It is true that in years past I was totally down to party. These were times when I was also drinking heavily and so could mask the unease and misery I felt in these situations, because I had also not mastered the art of putting myself first and saying "no" when I didn't want to do something instead of pretending like I was happy to go along with it so I didn't hurt anyone's feelings. Most people think I'm joking when I talk about my "party budget" -- I essentially prepare myself for the energy for about four parties or major events per year. Additional events will be considered, especially important ones like weddings, birthdays, et cetera, but it's not guaranteed that it's in the budget. And you know what? I'm perfectly happy with that.

I don't feel like I'm missing out on the world, although I am more than mildly irritated that my days as a Dance Dance Revolution champion are over. I don't feel that I'm not accomplishing anything in my life. Some days I will accomplish more than others. Today I have done all of the laundry, served two meals, helped make pancakes, made double chocolate chip banana bread from scratch, cleaned up the kitchen after said banana bread exploded a little in the mixer, spent time with the kids and my boyfriend, and now I'm sitting down to write while I wait for the dryer load containing our bedsheets to finish, after which point I will put the freshly laundered sheets on the bed. Later tonight I will clean up the kids' room and cook dinner. I will do the dishes. If I have time, I will play some Diablo 3 with my boyfriend and wind down for the evening by reading more in my current book. I will fall asleep happy and proud of myself for accomplishing as much as I have today. Perhaps it's not as prestigious as working at a major game company, but it's my life now, and I love it.

Caring for other people has always been my passion in life. The only reason I didn't go into nursing or a similar field is because I was terrified someone might die on my watch, knowing that it'd probably haunt me for the rest of my life. I also love baking and cooking, but only as long as I know that the person (or persons) eating whatever I make are enjoying it, so that ties directly back into the primary passion. I'm in a position now where I can not only take care of myself, but others as well. I can stay in a controlled environment that can be as dark or bright as I want it to be, as cold or as warm, as loud or as quiet. If I'm having a bad flare-up, I don't have to scrape myself off of the bottom of the shower and stress myself out about how I'm going to find the strength to function for a nine-hour workday. I can just say "Okay, self, we're not going to run any marathons today, so just do what you can and we'll be fine." I've reached the point where I can ask for help without feeling guilty for it or worrying that I'm going to lose my job for it.

Wouldn't you know it, I'm actually feeling better since I left my career and focused on my own interests and making a happy, safe home for myself and my loved ones. I feel like I've made more of a difference in people's lives in the last three months than I have in the last three years. I'm not running myself ragged and pushing myself to my very limits so that instead of feeling lousy for one day, I feel lousy for a whole month.

I'm in an extremely loving, supportive relationship. I have time to pursue additional knowledge. I have time to try new hobbies. All of those cookbooks I've been hoarding are getting plenty of use now because I have the time and energy to finally give all of those tasty recipes a shot. My brain is in no danger of withering away from lack of stimulation! I keep in contact with my friends and family all day long. I interact with the gaming community. Just because there's nobody else home doesn't mean that I'm isolated.

This month I'm traveling by myself for the first time in years to visit my parents up in Northern California. At the end of the month, I'm accompanying my boyfriend to Bellevue for CPPCon. In October, I'll be running a week-long Extra Life charity stream. In November, I'm going to participate in NaNoWriMo. In between all of this I'm streaming regularly with my World of Warcraft guild's Wednesday night casual raids and anything else that strikes my fancy. I'm writing on a more consistent basis than I have before.

So why do I talk so much about my illness? Because I know too well what it's like to feel scared to talk about it. I know the stigma that exists around invisible illnesses because I've run up against it countless times. I want everyone else out there who is dealing with a diagnosed illness or even just the symptoms right now in their battle to be taken seriously that they are not alone. I want people to learn about my illness, to ask questions, to maybe look at the sick or disabled people in their lives through a slightly clearer lens, to not blame themselves for feeling sick. Support networks and the feeling of normalcy while still receiving understanding and compassion for limits that may be different from a healthy person are incredibly vital in living a good life with a chronic illness or disability.

I'm not trying to single anyone out with this Treatise On My Awesome Life or make anyone feel guilty. I'm not angry. I'm flattered that there are so many people who want me to have the highest possible quality of life. This is just me saying loudly and proudly that I am doing fine. I am handling what life has thrown with me, and then probably making cupcakes with it.

Comments

  1. I appreciate people who speak out on their "issues". It helps remind me that it's OK to have my own "issues". It helps remind me that it's OK when I just can't whatever. Take this time and do your thing. Cooking is great! Streaming, learning, finding yourself, all of it. Blogging is a wonderful way to help others, and I found it therapeutic to do it when I was keeping mine up. Sometimes you just need some time to reset and find your direction. I am thrilled that you're going to be doing the things you used to- NaNoWriMo, streaming, etc. Enjoy... truly en JOY your time and finding the peace that doing what you love brings. Proud of you, kiddo.

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