#accepting limits

+ ADVOCACY or HOW I’VE LEARNED TO STOP WORRYING AND LOVE LOCAL ACTION.  In the before times, I was a big picture kinda person. I looked for the most efficient method of heading systemic problems off at the source. March. Protest. Call senators. Email my local reps. Educate my whole social circle. Invite people to join me for well-researched solutions to help the most people.  Can I tell you how many systemic problems I’ve encountered since my health cratered? The unemployment system. The insurance system. The medical system. The chronic illness care system. The pharmaceutical system. The SSDI and SSI systems. OH MY GOD THERE ARE SO MANY PROBLEMS THAT JUST NEED A SENSIBLE APPROACH AND ALL MAKE ME WANT TO SCREAM. But fuck. I’m so tired.  I don’t have energy for all that. The ‘old me’ could have rolled up her sleeves and rounded up some friends and done the research and considered the messaging and PUSHED PUSHED PUSHED on those problems because THEY ARE MY PROBLEMS. I live them. I know them. They make me miserable. I am the best person to advocate for myself!  But I’m not that ‘old me’ right now, so you know the advocacy hill I climbed instead? I haven’t been able to tend my yard in months. My garden looks like the person who lives here died. The place is feral. I have rats burrowing into my little city lawn. It is not only unsightly, but a complete EMBARRASSING, DISGUSTING, HEALTH HAZARD. So I wrote an email to my local friends and explained my situation and asked for help. I am ashamed. I let it get this bad. I am worried that some of the friends who haven’t replied think less of me. But I am unable to handle this on my own. And I had to admit that. And I told people. And I asked for help. A friend is coming over tomorrow to help make a start. I hope to have it tamed before the end of July.  It doesn’t change anything big or systemic, but if it keeps my neighbors from getting rats, or their kids from getting sick, or my house from getting fined... my self-advocacy will have fixed a problem right here at home.  That’s gotta be good enough for now.

I've spent most of my adulthood with the messaging that everything has to be a hustle. Unlearning that, learning to accept that I need to respect my limits, ranks among the most difficult things I've done.

I always freak out about travel, whether it's twenty minutes away by car, or two hours away by plane. With the car situation, I'm always worried that I'm going to leave something at home that I'll need because of a symptom flare. Then, because I don't have it, I have to call the evening short, turn around and go home. If I can go home, depending on how bad the flare is... there's been more than once I've had to crash at a friend's house. I carry a dose of my morning meds with me at all times, for that reason. Plane travel. Wow. Not only do I not have the option of turning around, but the flight itself will likely cause a flare. And the humidity in Seattle will cause a flare, guaranteed (that's why I left!). Pain. Real, physical pain. And potentially an ER trip (if the last 4 times I've flown are to be trusted). This is my travel freak-out. When I get in this state of panic, I will shut down completely, if I'm not careful. Not that I can't take care of myself, no... More that I'll lose hours just staring, my thoughts racing (or no thoughts at all), because the whole thing is just too scary. I'm going to talk to my doctor and see if I can't get some extra medication for that time. I can go back on the Relpax for the migraines. I have no idea how we're to address the neuropathy. Probably more Ultram so that I'm not bouncing around on higher, then lower, doses of narcotics. But I don't know it's going to be enough. I have to guess and hope I'm accurate. The worst the pain was in Seattle, it hurt to much to hold a pencil in my hands, let alone type. I nearly lost my mind, worrying I'd have pain like that forever. And now I'm volunteering to go back into that environment? I sure hope this works, that's all. I'm trying to allow myself to feel the fear and do the right thing anyway, but feeling the fear at this point is not helping!! There's just one phrase, one sentence, that is in my way: I WILL HURT. That's enough to stop me cold. At that level of pain? Absolutely. That's terrifying. This is why I am not anti-denial. Sometime, denial is a heck of a useful tool. If I can just block out the part past me getting on the plane here in Denver, then I can still get done what I need to get done, without worrying about what comes after. All I have to do is make sure I am prepared to get on that plan, and be away for a week. I can imagine I'm going up to the cabin, where I routinely feel better, from the higher elevation. I'd need to take the same preparatory steps. I'd just feel better about it, and in that way, I'll actually be able to accomplish it.  I'm aware that I'm fooling myself. That's the intent! I have to do this. The likely reality is scaring me stiff! I have to give myself some carrot. And I can't hang my hopes on this trip working out as my motivation. I need to be able to handle the disappointment if it doesn't work out, and compounding it with, "I did all that suffering! For nothing!" is never a happy time. Also, I don't know what kind of time I'll need to recover once I get home again, so rewarding myself with something at home could need to be put off. That will only make me doubly disappointed. Nope. It's just easier to trick myself into a good mood. I'll probably have a full panic attack once I get on the plane, but my counselor and I have prepared for that.  This is what I call, Responsible Denial-- when my denial enables me to be more productive, more responsible (obviously), and more compassionate to those around me. I go into denial that I'm in pain all the time. Sometimes, it actually works! Then I'm able to use less medication, get more done, and just live more of a normal life. Now, I have to be very careful. I don't want to ignore symptoms that are new, or unusually severe. (The latter is pretty easy, though... massive distress is usually urgent.) New symptoms need to be referred to a doctor. They're the ones who can tell me what it's about, how to manage it, and whether or not I need to worry. Responsible denial is a great tool, but I must never use it selfishly. It's about enhancing my ability to be responsible, not about avoiding consequences. So... it's off to "the cabin," and now I actually feel like I want to make sure I have a good time. Doing the steps to make sure that happens is going to be easier now. I've even got a smile on my face.  And who knows? Maybe it could all work out... Perhaps my adaptation to high altitude will help me cope at sea level for a short while, because I'm getting so much more oxygen. It could happen! And I won't know until I get there... In the meantime, there's work to be done!

One of the biggest problems I've had in dealing with my chronic illness and its limitations, is seeing myself as someone I can admire. There were certain preconceived notions I had of where I would be at 38, and my vision was no where near where I actually ended up. Some things I dreamed of---having children from my own body---are impossible for me. It's really easy to look at my life and see how much I've lost. But that kind of thinking gets me nowhere: it's focusing on the negative rather than the positive. If you don't like where you are now, picture a future you that you can live with, and aim for that. Then current circumstances are only temporary hurdles on the road to a greater destination. The easiest way to do that is to visualize who I am to be in the future. When I do this visualization process, I first think of how I want to feel. This woman that I am to become... how does she feel inside? More confidant? Calmer? Happier? More content? More patient? A little more cynical? More outgoing, more reserved, or a little of both? I make sure that the qualities of this future me are qualities I can live with. If she's not happy, I throw that visualization away and find a new one. There's no use imagining a future me that's miserable. This is supposed to be an exercise about where I want to go with my life. Aiming for unhappiness is not that! And our visualization process is exactly that: Aiming ourselves towards a better, future us. After I get the feelings down, then it's usually easy to picture what she looks like: longer hair (because I'm growing mine out), a few more lines and grey hairs (but I don't mind), quick to laugh, but mostly quieter than I am now; more watchful. I picture her in more business attire. Somehow she's figured out how to get some income going again and I've got new suits to show for it. I don't know how she's done it, but have to know all the details! That part of the fun... Figuring out how to make this stuff true! Once I can picture her, I can start listing off the reasons why she is the woman who she is. I know what she does for a living gives her a great sense of purpose. I can see that life has been difficult during the last 10 years, and I don't know what she's been through, but that the trials have made her stronger. I see her working in her new chosen field, and being recognized for her efforts. I see her smiling at the praise, but with humility because she knows the journey was that of a thousand steps. She's been able to make new connections in life and new friends with this line of work. I see her in a convention hall as part of the event organization staff, the applause leaking in from the dining hall, for whomever is speaker at the dinner that evening. When I picture it, the event is important enough to be a cloth-napkin affair, and that thought makes me smile. I imagine her in her off-time, too. She's enjoying hobbies that I like, but didn't bother with before, because I was too busy doing more physical things that are now out of my reach. She's physically active (so that I aim away from being a couch potato), but in a more disciplined, mature way. Her exercise is Tai Chi in the quiet hours around sunrise, not dancing at the clubs to ear-splitting music until 2am. She's quieter than I ever dreamed of being, because it's never something I wanted, more it was thrust upon me by my disease. But I can picture it a sophisticated quiet, rather than quiet from boredom or humdrum. There is plenty of excitement to be had on the intellectual level that doesn't require zooming about physically as well. There are plenty of adventures of the mind that don't require extreme sports for their thrills. When I do this visualization process, and I'm able to come up with a future me that excites me, then Ireally have something to live for: myself! Whenever I start to feel discouraged, I can sit and think about her, my future self, and think about what I need to do to get me there. I make sure to never visualize myself as healthier. That's dangerous---it's a set-up for disappointment should something bad happen. Instead, I make sure I visualize her as broken as I am now, if not moreso. But, to keep myself from despairing over that fact, I envision her as fully capable of handling whatever it is she has going on. That starts me thinking along the lines of problem-solving rather than just problem-despairing. I look at her life (which is not an impossible goal) and wonder, "Okay, now how did she get there?" When that happens, I start thinking about options and opportunities, rather then obstacles. What's amazing to me is when I have a future I can look forward to living, I start automatically doing a lot of self-care activities. One big things I notice is that I'm a lot better about taking care of things that have no real pay-off now, but will have huge pay-off in the long run. My teeth are especially easier to take care of: I want my future me to have good teeth she can enjoy (I don't picture dentures for my future me), so I feel a real incentive to be responsible now. I also get a lot better with my money: I'm able to say to myself, "No, we can't make that impulse buy, even though we want to. We've got plans, and those come first." It's easier to make small sacrifices now, even though my self-pity/inner child wants the quick emotional fix of a right-now purchase (even for something as small as a box of Tic Tacs). When I know I'm working towards a goal, it becomes easier for me to defer gratification. Yes, I want the Tic Tacs now. But that satisfaction will fade quicker than the orange, sugary, candy after-taste. If we want real, lasting satisfaction, let's go for this bigger, long-term goal, instead... Self-talk like this helps me enhance my patience with my desires-of-the-moment, and choose actions that are more beneficial overall. Try it for yourself, and see what happens! 1) Picture a future you that you like and admire, who successfully lives with your disease. What do they look like? How are they different from you now? 2) Imagine what it feels like to be that person. What does it feel like when they laugh? What do they feel like when they've see a long, lost friend? How do they feel physically when they run across something that melts their heart? 3) Visualize them moving through their life. What do you see them doing? What do they do in their off-time? Given your current limitations, what have they figured out to do to get past them or make peace with them? 4) Ask yourself, is this someone I want to become? If not, revisualize your future self until you can answer: Yes. 5) Figure out how to get from here to there. Good luck, and happy daydreaming!!

For the folks who aren’t chronically ill, think of every time you’ve been injured or severely sick. Perhaps a broken bone or pneumonia landed you in the hospital once. There were doctors and medications and instructions. You did everything they asked, all the while upset that you had to deal with this (rightly so) and wondering, “When, oh, when does it get to be OVER?!” Imagine that time. Remember being stuck in it, and all the things you couldn’t do, all the help you had to ask for, how much of an inconvenience it all was, how people had to be patient with you… Now imagine all that, but knowing that it’s never going to be “over.” It’s never going to get better. That your body will only get worse given time. Those crutches are staying. Those medications are part of your life now. The doctors and staff at the ER will know more about your life than your hairdresser. You’ll actually hear those terms enough times to know how to pronounce them. People will stop being patient and wonder why you haven’t learned to live with it yet, even though the symptoms feel as fresh as day one, every time. Vomiting always feels like vomiting. Kidney stones always feel like kidney stones. What we do get better at, in the long run, is getting angry at it. Our disease (literally dis-ease) is something we hate about our life. It’s like being shackled to a monster. We have to drag this ugly, demanding thing around with us every where we go! It’s never notthere. We can sometimes forget for a little while (#epicwinning), but it always comes back. We hate it about our lives, and we hate it about ourselves. Even though the disease may be the responsible party, we, the person, have to take responsibility for it. “I’m sorry, I tripped over my disease. I’m sorry, my disease is throwing a tantrum. I’m sorry, my disease is a jerk and won’t let me come out to play…” Pretty soon, I feel like the jerk having to explain all the time… But it’s really, really dangerous to look at my disease this way. Pretty soon, I’m hating me. And that’s the least constructive place I can be. My neighbor is involved in mix martial arts and she has inspired me. She's a cute little thing and you never would guess she could kick your butt. I was looking at some of her videos from a recent tournament. How those ladies compete is not a natural way to move. Watching the competition videos with her she would point out her mistakes, "now if I was paying attention there, she wouldn't have gotten me into that lock...". After the tournament, she had mean bruises and a few nasty bumps on her head. But these injuries didn't make her a victim. They made her a bad-ass. Pain and suffering isn't always a negative thing. If it is pain and suffering we have chosen to accept (as, say, a means to an end) then we're a lot less likely to feel tragic about it. It's part of the process, right? Just the price of admission... We all understand that good things generally have a price tag stuck on 'em in some way. Whether it's enduring hundreds of class-hours for a degree, or working your way up the ranks in the military, or meticulously watching your weight to look good for your 20th high school reunion, we understand pain is a part of life. So isn't it reasonable, then, to say that the pain and suffering of my disease is no different? Pain is pain. It's the same nervous system. It's the same brain activity. So why would the bumps and bruises I get from one activity could be seen as triumphant, and the bumps and bruises of another activity seen as evidence of loss? They get you the same funny looks at first... "What the hell happened to you?!" I have a scar through my eyebrow from a freak croquet accident (a long story for another day). The doctor who stitched me up told me to tell everyone I was on a secret German fencing team, and to graduate, everyone must leave with a scar. This one is mine. A scar on a woman's face on its own could be something to really be ashamed of, but add the cool story and it becomes mysterious and romantic... Part of the problem is the frustration. I used to be able to walk just fine, thank you very much. I could leave my car at home, walk 5 miles, go shopping, and walk home again... just because it was a nice day. Now I have to hope that a nice day outside coincides with a nice day inside my body so that I can enjoy the day! And I have to drive. And sitting for most of the time is mandatory. Bah!! That certainly takes the fun out! I can compare my life now to the life I knew before I got sick, and it will fall short in a lot of ways. My dreams at night tease me with visions of a body that follows my commands, instead of commands me about... I can dwell on all of that and be miserable. Or, I can envision that I am on a quest to earn my black-belt in illness arts... That the bumps and bruises are testimony to learning process and something to be honored by rather than ashamed of. Yes, I am dealing with a storm of invisible problems that makes it difficult for other people to have sympathy for me. But I don't look sick? Thank you! I was hoping it wasn't immediately obvious. Just because other people have difficulty recognizing my problems and accomplishments, does that mean I should devalue my efforts too? Absolutely not. I may not be able to get over this. But I can find a way through despite it. I don't have to find the light at the end of the tunnel. I can BE the light instead.