This is a topic that's been on my mind off and on for, well, a really long time... as long as I've been actively fighting chronic illnesses, that is. So... years? Don't think that my battle began with fibromyalgia, far from it!
I've always been "sickly" in some ways. Asthma as a kid and teenager, low energy levels and high need for sleep with a very difficult time getting up, leg pains throughout life... I just assumed all this was normal, and that I kind of sucked at life for not being able to soldier through as everyone else must be doing. I looked at the sporty kids in my high school, the ones that could run the mile without difficulty, and I wondered how they did it. I didn't know that there was something wrong with me, that you're not supposed to feel that way. I remember helping to plant a tree during Bible college, and just ten or fifteen minutes of the exertion of digging left me feeling cold, lightheaded, nauseous, weak, and trembling... yet I kept digging, because my partner was still digging. If they could continue, I could continue. I assumed that they were feeling the same way, but they were tougher than I was. Wrong. I didn't know that exertion isn't supposed to leave you feeling that way!
During Bible college is when I really began getting sick, and the gastrointestinal issues came to the forefront. I powered through as best I could, knowing that I was very sick in some ways, yet not knowing that I was abnormal in others, and a few months after graduation I finally found out that I was allergic to a bunch of different foods and that I had bad hypothyroidism. The next few years were a constant battle with my energy levels, my guts, and also my mind. I started working through my past abuse, all the different flavors of it, and I noticed that as I healed emotionally I also began to heal physically. But I was still sick.
I had reached a place of reasonable stability when the fibro reared its hideous head and began to drag me below the surface of functionality. I'd somehow always managed to stay afloat before, usually motivated by a fear of rejection and sheer stubbornness combined with economic necessity, but now I was sinking, and fast. Since last fall, I've found myself in a place where I require naps on a regular basis, I have a walking aid with me at all times when I leave the house, I regularly rely on painkillers to make it through a day (judge me as you will), and I still struggle with eating and digesting food in adequate amounts. And yes, I even have a handicap parking tag hanging from my rearview mirror. (Which is the bomb, by the way!)
This isn't to say that all is doom and gloom. I do see myself getting better in increments, and I think the Long, Dark Slide Into Oblivion is finally over. Now that I've recovered from the wedding stress, I feel like I'm taking incremental steps back up that figurative stairway that I had been so rapidly descending, and that encourages me! Mom told me today that for a while she began to think that she might have to move out here and just take care of me until I eventually died, that's how bleak the outlook was. (To be fair, she was also worried that I had cancer and they just hadn't caught it or something.) I assured her that I've stabilized (for now), and that I feel as though I'm improving some. I think that helped to put her at ease a bit.
The possibility of returning to my "old" self, or even better, brings me to a painful realization, though, one that I am actually quite loathe to face. It sounds kind of silly to admit even silently, much less to put into words on a page, but... I'm scared of getting better. No, really. I am.
Honestly, I've gotten used to being sick. This has become my reality, my daily battle. When it's "gone", when I'm better, what do I fight against then? What do I aspire to? Life is so simple when it is distilled down to "get better". That's what you focus on. That's the dream, the goal. It's the gatekeeper of other dreams.
I want to travel to different countries and experience different cultures.
I want to try sky-diving.
I want to have a baby and raise it.
I want to have a fulfilling job that I enjoy.
But those things (except for the job, maybe) are not things I can do right now. They would destroy me, and possibly those around me, were I to attempt them now. First things first, I must "get better".
I know it sounds like I've let the sicknesses become my identity. Like I'm saying, "Without them, what am I?" Maybe it's true. Maybe I have. I'd like to think that's not true, but I do know that as long as I'm sick, people consider me to be a fighter. People have this certain idea of me as a person, but when I'm not sick anymore... who am I? I am me, but I've lost a part of what made me "me" for a while. Sure, I can say that the fight doesn't define me, but... doesn't it? Not wholly, no, because I am so much more than a fibro fighter, or a UCTD fighter, or a hypothyroid fighter, or a depression fighter. I am Cassandra. But those different "fighters" are also a part of me, and when I'm not sick anymore, like not really sick, it's like those fighters go away, they step back into the shadows. They've been the visible forefront for so long, because this daily fight is so visceral, so intense, that the other aspects of myself can only come out solo in spurts and glimpses, or share the limelight with the fighters at best. When the fighters recede into the shadows... the stage feels very, very empty.
At least, that's how I perceive it to be. I do have visions of freedom, glorious freedom, you know-- to just do whatever the heck I want for a change?! But maybe it's like Stockholm Syndrome... you get used to your imprisonment, and you even get kind of fond of it. Humans love familiarity, even if it is a terrible familiarity. You get comfortable, and change is frightening. Even good change.
Also, when I am not sick anymore, I am then way more responsible for... everything. Cue my intense fear of failure and my unrealistic expectations. As of now, I can assuage my guilt with, "I'm too sick to accomplish _______, so it's okay." Sure, but what about when I'm not sick? Then it's just my own damn fault.
And maybe part of it is my fear of living in abundance. I come from a place of "I'm doing pretty good considering _______." I've never approached life from a place of, "I'm doing pretty good." There has always been a qualifier. Sickness is my qualifier as of right now. When that is gone, then I must face my life as it is, and the prospect of that is... scary.
That's what it boils down to. I'm scared, scared to lose my familiar cocoon of pain and symptoms and walking sticks... scared to step into the sunlight because that's not what I'm used to. Scared that "better" will let me down. Scared to be disappointed, or worse-- to disappoint.
But as I was thinking about it the other night, I realized that I'll never be 100% "better", not really. At least, not in this current place and time. They don't have cures for what I have. It's all management, really. I am beginning to view it as I view my food allergies-- if I ignore my limits and eat whatever I want, I damage myself and I hurt. I pay a price. Sometimes I pay a price for something that I don't even know the cause of! I can be as good as can be, and sometimes I still just hurt or get sick, and that's a fact of my life. (Momma C always knew when I was stressed even before I did, because I'd start having gut problems and get sick. She's the one that made that connection, not me.) I have chronic illnesses. Chronic means that they're going to be around a long time. I can choose to be good about it and manage them as well as I can, or I can be an inconsiderate dick to my body and pay the price. Even if I am as good as can be, sometimes things beyond my control will cause flares-- weather, environmental stressors, other illnesses like colds or flus, etc. Like my allergies, I can get to a place of stability, where I'm not constantly miserable... but I will spend the rest of my life being constantly aware. The fighters will be lurking in the shadows, keeping tabs on things and patrolling the perimeters. Sometimes they'll have to come back into the forefront, but the goal is to get to the place where they offer background support to the other aspects of myself that will emerge into the light, one by one.
Sure, I'm scared of what it will mean when I'm "not sick anymore", but I think it's worth at least trying. I was scared of the changes I needed to go through emotionally to heal from my past, but I would never trade this health for that dysfunction! Facing the fear and walking through it were valuable experiences... and this is just another aspect of that.
Besides, if I hate it, I know what I have to do to get sick again, right? ;)
(Please know that I'm being facetious! I refuse to play the system for my own gain. Stuff like that ruins the legitimate claims for help that people with chronic illnesses need.)
Also, Dave Walker over at From the Fog did a great post on this very topic the other day, which encouraged and inspired me to actually get this out of my brain and onto "paper". Thanks, Dave, for that kick. I needed to process through this.
I've always been "sickly" in some ways. Asthma as a kid and teenager, low energy levels and high need for sleep with a very difficult time getting up, leg pains throughout life... I just assumed all this was normal, and that I kind of sucked at life for not being able to soldier through as everyone else must be doing. I looked at the sporty kids in my high school, the ones that could run the mile without difficulty, and I wondered how they did it. I didn't know that there was something wrong with me, that you're not supposed to feel that way. I remember helping to plant a tree during Bible college, and just ten or fifteen minutes of the exertion of digging left me feeling cold, lightheaded, nauseous, weak, and trembling... yet I kept digging, because my partner was still digging. If they could continue, I could continue. I assumed that they were feeling the same way, but they were tougher than I was. Wrong. I didn't know that exertion isn't supposed to leave you feeling that way!
During Bible college is when I really began getting sick, and the gastrointestinal issues came to the forefront. I powered through as best I could, knowing that I was very sick in some ways, yet not knowing that I was abnormal in others, and a few months after graduation I finally found out that I was allergic to a bunch of different foods and that I had bad hypothyroidism. The next few years were a constant battle with my energy levels, my guts, and also my mind. I started working through my past abuse, all the different flavors of it, and I noticed that as I healed emotionally I also began to heal physically. But I was still sick.
I had reached a place of reasonable stability when the fibro reared its hideous head and began to drag me below the surface of functionality. I'd somehow always managed to stay afloat before, usually motivated by a fear of rejection and sheer stubbornness combined with economic necessity, but now I was sinking, and fast. Since last fall, I've found myself in a place where I require naps on a regular basis, I have a walking aid with me at all times when I leave the house, I regularly rely on painkillers to make it through a day (judge me as you will), and I still struggle with eating and digesting food in adequate amounts. And yes, I even have a handicap parking tag hanging from my rearview mirror. (Which is the bomb, by the way!)
This isn't to say that all is doom and gloom. I do see myself getting better in increments, and I think the Long, Dark Slide Into Oblivion is finally over. Now that I've recovered from the wedding stress, I feel like I'm taking incremental steps back up that figurative stairway that I had been so rapidly descending, and that encourages me! Mom told me today that for a while she began to think that she might have to move out here and just take care of me until I eventually died, that's how bleak the outlook was. (To be fair, she was also worried that I had cancer and they just hadn't caught it or something.) I assured her that I've stabilized (for now), and that I feel as though I'm improving some. I think that helped to put her at ease a bit.
The possibility of returning to my "old" self, or even better, brings me to a painful realization, though, one that I am actually quite loathe to face. It sounds kind of silly to admit even silently, much less to put into words on a page, but... I'm scared of getting better. No, really. I am.
Honestly, I've gotten used to being sick. This has become my reality, my daily battle. When it's "gone", when I'm better, what do I fight against then? What do I aspire to? Life is so simple when it is distilled down to "get better". That's what you focus on. That's the dream, the goal. It's the gatekeeper of other dreams.
I want to travel to different countries and experience different cultures.
I want to try sky-diving.
I want to have a baby and raise it.
I want to have a fulfilling job that I enjoy.
But those things (except for the job, maybe) are not things I can do right now. They would destroy me, and possibly those around me, were I to attempt them now. First things first, I must "get better".
I know it sounds like I've let the sicknesses become my identity. Like I'm saying, "Without them, what am I?" Maybe it's true. Maybe I have. I'd like to think that's not true, but I do know that as long as I'm sick, people consider me to be a fighter. People have this certain idea of me as a person, but when I'm not sick anymore... who am I? I am me, but I've lost a part of what made me "me" for a while. Sure, I can say that the fight doesn't define me, but... doesn't it? Not wholly, no, because I am so much more than a fibro fighter, or a UCTD fighter, or a hypothyroid fighter, or a depression fighter. I am Cassandra. But those different "fighters" are also a part of me, and when I'm not sick anymore, like not really sick, it's like those fighters go away, they step back into the shadows. They've been the visible forefront for so long, because this daily fight is so visceral, so intense, that the other aspects of myself can only come out solo in spurts and glimpses, or share the limelight with the fighters at best. When the fighters recede into the shadows... the stage feels very, very empty.
At least, that's how I perceive it to be. I do have visions of freedom, glorious freedom, you know-- to just do whatever the heck I want for a change?! But maybe it's like Stockholm Syndrome... you get used to your imprisonment, and you even get kind of fond of it. Humans love familiarity, even if it is a terrible familiarity. You get comfortable, and change is frightening. Even good change.
Also, when I am not sick anymore, I am then way more responsible for... everything. Cue my intense fear of failure and my unrealistic expectations. As of now, I can assuage my guilt with, "I'm too sick to accomplish _______, so it's okay." Sure, but what about when I'm not sick? Then it's just my own damn fault.
And maybe part of it is my fear of living in abundance. I come from a place of "I'm doing pretty good considering _______." I've never approached life from a place of, "I'm doing pretty good." There has always been a qualifier. Sickness is my qualifier as of right now. When that is gone, then I must face my life as it is, and the prospect of that is... scary.
That's what it boils down to. I'm scared, scared to lose my familiar cocoon of pain and symptoms and walking sticks... scared to step into the sunlight because that's not what I'm used to. Scared that "better" will let me down. Scared to be disappointed, or worse-- to disappoint.
But as I was thinking about it the other night, I realized that I'll never be 100% "better", not really. At least, not in this current place and time. They don't have cures for what I have. It's all management, really. I am beginning to view it as I view my food allergies-- if I ignore my limits and eat whatever I want, I damage myself and I hurt. I pay a price. Sometimes I pay a price for something that I don't even know the cause of! I can be as good as can be, and sometimes I still just hurt or get sick, and that's a fact of my life. (Momma C always knew when I was stressed even before I did, because I'd start having gut problems and get sick. She's the one that made that connection, not me.) I have chronic illnesses. Chronic means that they're going to be around a long time. I can choose to be good about it and manage them as well as I can, or I can be an inconsiderate dick to my body and pay the price. Even if I am as good as can be, sometimes things beyond my control will cause flares-- weather, environmental stressors, other illnesses like colds or flus, etc. Like my allergies, I can get to a place of stability, where I'm not constantly miserable... but I will spend the rest of my life being constantly aware. The fighters will be lurking in the shadows, keeping tabs on things and patrolling the perimeters. Sometimes they'll have to come back into the forefront, but the goal is to get to the place where they offer background support to the other aspects of myself that will emerge into the light, one by one.
Sure, I'm scared of what it will mean when I'm "not sick anymore", but I think it's worth at least trying. I was scared of the changes I needed to go through emotionally to heal from my past, but I would never trade this health for that dysfunction! Facing the fear and walking through it were valuable experiences... and this is just another aspect of that.
Besides, if I hate it, I know what I have to do to get sick again, right? ;)
(Please know that I'm being facetious! I refuse to play the system for my own gain. Stuff like that ruins the legitimate claims for help that people with chronic illnesses need.)
Also, Dave Walker over at From the Fog did a great post on this very topic the other day, which encouraged and inspired me to actually get this out of my brain and onto "paper". Thanks, Dave, for that kick. I needed to process through this.
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