Traveling is an adventure, and not always a good one. I tend to take everything as it comes, but lately, things are rougher than they should be. In January I fell and sprained by right ankle and knee, making the day-to-day existence even trickier than usual. Traveling brings that home in a way that stuns me. I need a wheelchair to make it through the airport. Between my back and my injured leg the gates are just too far away. And that is just the beginning.
I have not spent a lot of time dwelling on my life, although this blog exists to share my experiences. I started it thinking I would share the ups and downs, in hopes that maybe someone else could feel they weren’t alone in their life. We all have problems, we all have issues, we all have life and occasionally it’s hard. I was in the hospital several weeks ago. After a night in the ER that had me repeatedly asking if I had died and had somehow ended up in hell, I eventually was admitted. The nightmare got worse from there and included a doctor that accused me of drug-seeking behavior, a nurse that treated me like I was an errant child and a horrific drug reaction that led to not one but two endoscopies. The second of which I was conscious for—and that one involved a second stretch of my esophagus. I tend to not talk about things, or maybe I don’t want to think things are as bad as they really are. Recently though, I came to the conclusion that it’s not how my life stacks up against others. Some have it better or worse—maybe. I say maybe because all experience is subjective. For me, it’s hard. I have attempted to hide, to not let out the truth of my life. The only time I’ve really mentioned it is when I “came out” about having gastroparesis and wrote a fanfic about it. Other than that, I tend to be quiet about it—thinking there are other people who have it a lot worse—but again, reality is subjective. It was all brought home to me this weekend while I attended Clockwork Alchemy, a steampunk convention in San Jose, California. Because of the gastroparesis, I have had difficulty with many foods for a long time, and anti-nausea drugs are a part of my daily existence. The two esophageal stretches have led to life where I can’t eat solid food. Yes, I admit, I have cheated with a bite or two of something more substantial than food blended in a Vitamix, but every time I have paid for it. Pain, yes, and sometimes that extra special feeling of the food getting stuck half way down—only with me it’s not just a phantom sensation—it is what has happened. Once or twice I’ve spent an hour or more carefully swallowing warm water in the hopes of getting the food down. Usually it works. Sometimes the food decides to leave by a more direct route. Doing a convention brings home all the things wrong and, in all honestly, takes such a huge toll that I am down one full day post con. Or I try to be. I have a full-time job and after a weekend of no real food and pain endurance, sometimes it all seems like it is too much. I don’t want to complain, but I think sometimes I don’t say enough, so I get into situations that are not healthy in a very real way. I push my body too hard. Somewhere in my head, I am still completely healthy and can handle anything. My heads not off, I have my arms and legs, so I am perfectly fine. In reality I’m not. And I need to be more open about it. Traveling is exciting, meeting new people is wonderful. I love doing panels and babbling excitedly about my various passions. I also end up in an endurance race that has me wanting to scream uncle after two days. I am nutritionally compromised, my pain level is hard to manage and I just smile and go on. I’ve decided it’s time to stop. I’ve decided it’s time to talk, and not through the voice of other characters in a fanfic, but in mine. I have a lot going on—is it more than others? Less? I don’t know. I just know this is my life. My food comes from a blender, my back is bad and my hands are numb half the time. My legs go to sleep, my neck never stops hurting. I’m not whining, I’m letting you all in on my life. I try not to complain, but maybe if I did, people would understand why I can’t do just one more panel, or one more con or why at times cranking out three thousand words is a challenge. It’s a big step, admitting life is less than what I want it to be, but it’s time I made it. Funny that a trip could be the final straw, but it was—at some point this last weekend I realized in order to be healthy I had to admit I was so far from healthy it’s not funny. I need to be able to say no, and let people know why. It’s hard to admit I am not strong, I can’t chew through nails or take down a rampaging horde, but right now I can’t.
9 Comments
Carol
29/5/2013 09:36:42
Oh, my dear!! I'm glad you've decided to "come out" as it were. People, including myself, need to be able to understand. I wish there was something I could do for you...I'd sure do it!
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Muffy
29/5/2013 09:59:06
Thank you so much. I can't tell you how hard it was to finally talk about all this, but now that I have a huge weight has been lifted. I promise to let people walk with me in this.
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You are one of the bravest and toughest people I know! Living with an "Invisible Illness" makes people strong. However, it is important to let people know why you "can't". Stay strong. Leap over the tallest idiots with a single bound. And when things slow down here, I will send you some recipes.
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Muffy
29/5/2013 10:15:54
I don't know about brave *blush* but it is important to let people know. I have hidden that part of me for too long. It's easier, just making a joke about it and brushing it off. The time for that is over, I think. I am not going to weep in sack cloth, but I am going to be honest. And recipes are awesome!!! I have learned one very important thing in all this--toast does not work in a blender. It's tastes okay, but the slimy is just not right!
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Janice
29/5/2013 10:17:47
Muffy, you have always been an inspiration and you're admission just drives that home.
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Muffy
29/5/2013 10:23:55
You are so right! Hiding is so much easier. Denial works, but one day it breaks down and we are left with the truth in front of us. It's a hard thing to face, that moment when you realize that it's not the way you pretend it is, that a good night's sleep won't fix everything. Silent illness can be a killer just because we are silent. I know it is hard to say "I can't do that because..." It's so much easier to do it, then quietly go back to my room and collapse. Thank you so much.
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Margaret
30/5/2013 09:38:17
Hooray for you, Muffy! It is quite difficult to admit to others how things really are. Even when I get that rare call from family asking how I am it's always "I'm okay" whether I am or not. You can only take complaining so long before you tire of it. I can sort of understand why they don't call more often. I assume they simply can't handle my being this ill and don't really know what to say or do to help. I'm glad you're finally at that stage where you're ready to share it with others.
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Muffy
30/5/2013 09:43:36
Getting to the point of admitting I am not Wonder Woman took a long time. I kept thinking I had my bullet-proof bracelets and all was well--and you know how very far that is from reality.
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Heather
26/6/2013 22:32:43
Muffy-thank you for sharing your "true" story. Your courage in revealing your true self has helped more than you can know. So many of us deal with an "invisible illness" of one kind of another and you have given voice to so many feelings that we deal with. I too struggle with the Superwoman Complex; nope, I'm fine, yes, I can do that and that and that. All the while knowing I will be the one to pay in pain later. Thank you for your honesty and I pray that those around you will come to a new understanding of you...and all of us as well. Be well my friend.
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Muffy MorriganMultum in Parvo means much in little and it describes life so well. I have gastroparesis, esophageal spasm and other issues that offer challenges to my daily life. This is the blog of those days. Archives
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