Stress.
Hello… You old Jerk. I thought I was doing a pretty good job of telling you to "Back the @%#$ up" and "Stay out of my life…" But, alas, here we are. We meet again. I knew you would be back… but, man, what a vengeance. You have it out for me this time. Way to take the good things that I hold onto and challenge them completely. Way to take my outlets and make them useless. You know what, just talking about you, helps you thrive in my life. Ugh, I need some mad meditation or something…
Okay, so meditation. I got this. I am into yoga. I have had some amazingly deep meditative states at the end of my practice. I didn't think deep meditation was possible for crazy thinkers and controllers like me, but I have before… Yep, I can do this. Close your eyes, breathe… Deep breath. Where is your breath, Amanda? Hello? Oh, crap. You are holding your breath. YOU CAN'T BREATHE. BREATHE!!! *Whooooosh* What the hell did you do that for? Are you trying to kill yourself? Why is your breath so shallow… and jumpy? Dear, Lord. Is this why you were holding your breath? You can control it… In and out. It's simple. This is simple. *In, in, shake, shake… Out, out, shake, shake…* Why are you shaking. Get this under control! Okay, try holding your breath and see if that helps. Why aren't you breathing?! BREATHE!
Okay, breathing is finally stabilizing. Good. We are there. Wait, are you crying? Are there tears rolling down your face? Yes, there are. Well, there goes the breathing. Okay, I surrender. We obviously need to feel this. Please, just curl up in a ball. We will cry together. I, your mind, will cry with you. However, I should make it know that I don't understand you, Heart. You are making no sense right now… and you won't let me help you… But, I hurt too now. I hurt because you hurt, and you won't talk to me. I will cry with you and we will try again later. Let's just hope the rest of the body doesn't know we are breaking down…
If only I was that lucky. Sadly, this dance between my brain and my heart has been happening for some time now. This is not the time, place, or method that I would like to get into my personal life or challenges… but, for the purposes of this post… all you need to know is that shit has been really tough over the last couple months. I am in a very stressful, trying, and emotional time in my life. I wanted to do everything I could to keep the AS at bay, but my a breakdown has a way of coursing through all your veins and straight into your weaknesses.
Needless to say, my diet went out the window. When you are breaking down… there is something so intoxicating about cookies, french fries… and bad food in general. If you are eating, that is. Its like being at the extreme end of a scale, isn't it? You are either stuffing your face with every toxic, delicious, sugary, bread, horrible thing in sight…. or you can't even look at a piece of food without wanting to spill your guts, stomach acid, and whatever food is left in your system. I have gone back and forth on this extreme scale the last couple months. I am either eating every piece of crap food in sight, or I am not eating at all.
Anyways, my immune system has been all over the place. I have missed workouts, yoga, peaceful and mindful meditation… My hormones have been all over the place… and it was all a ticking bomb. I knew it was coming. I could hear the ticks… but I tried to remain positive. When I have had energy, I did something for me. Maybe yoga. Maybe a bath. Maybe just a laugh. But, last week… my body heard this ongoing crying between my heart and my head and it surrendered. I had a flare.
Oh, AS flare. How you pain me so. Physically, mentally, and emotionally. It has been the last straw on this journey through hell. Luckily, some yoga, some relaxing, some pain meds… and I seem to be coming out of this one on top. It didn't get as severe as a couple ones in the past, and I didn't have to do anything to drastic to get back to an okay place. I am in pain or have pretty severe aches everyday right now though :( Manageable, but annoying and hard. Frustrating. Uncomfortable. Sometimes, I just want to scream… "I WISH MY BODY WOULD ACT IT'S AGE!!!"
I do, sometimes, wonder what other 25 year olds feel. What their aches and soreness are like… If they have any. I mean, if you are active, or sitting at a desk all day, or maybe lifting heavy objects… I am sure you are. But, I wonder how deep that pain goes and what "normal" is. This disease can be so draining, so debilitating, and so so so painful sometimes. I know that the stress doesn't help, and I have my moments of strength, but to be honest with you… my friends, family, readers, and supporters… I am going through a rough time and I am fighting the odds with this disease and continual flares. This is the first day where I felt I could humor the idea or writing to express myself, my frustrations, and the battles of AS and stress.
Stress, hard times, struggles, low periods… whatever you call them, and however long they last…they are challenging. They are the periods we have to fight to get through and challenge our thinking on. They sometimes make no sense at all. You have no reason to feel a certain way, but then again… every reason in the world. We all have them, we all go through them. In different ways, and for different reasons. But not only do I have to find my head and my heart's communication line through a rough time, but I also have to battle the stronger and uglier head of this disease. It sees the weakness in my emotions and wants to attack. I am vulnerable. However, at my very core… I am an optimist. I am a survivor. I know that I will be okay, I just don't always know how or when I will get there. So, this is what I am dealing with. This is where I am at in my journey. And to all of you reading, I could use your positive vibes, well wishes, and thoughts. Thank you.
Love to you all,
Amanda
Thursday, January 9, 2014
Thursday, October 3, 2013
Fear
Fear is an emotion induced by a perceived threat which causes entities to quickly pull away from it and usually hide. It is a basic survival mechanism occurring in response to a specific stimulus, such as pain or the threat of danger.
Can I just be honest for a second? I am scared.
Okay... there I said it, I think out of everyone, I have been the most afraid to admit that to myself. But, it is true. As I have said before, the worst thing about all of this is the unknown. I am trying everything I can think of to stop this disease, prolong my mobility, and live my life to the fullest, but sometimes I don't think I am addressing the emotional part of all of it. I have been diagnosed with an inflammatory arthritis that will attack my spine every day of my life. My body will attack itself, without realizing it. It will fight to steal my youth, my mobility, and my ability. I will live in and with pain. How do you come to terms with news like that? Am I doing that? Sometimes I don't know if I am dealing with it, avoiding it, or pretending I am doing either one of those things. I don't want anyone to feel sorry for me, but I also don't want anyone to think it's easy... It's a complex place I have found myself. I have immense fear of it and sometimes, the only way I think I can avoid that fear, is pretending that this isn't happening to me. But, when I do that... I seem to be brought back to reality by some physical disaster and its like a severe collision into my life.
Honestly, I can't take anything else with my health. I am seeing more doctors than I have ever in my life. I spend so much of my money and time on my health care trying to fight this thing head on. I have had my body respond in such weird ways in the last year of my life, and I have no idea what is related to my AS and what is not. I don't know what is just stress, life, womanhood.... And I have no idea what this disease is truly doing to me on a daily basis.
I am in fear. I want to "pull far away from it and usually hide." I feel that I must try to "survive" in response to the "pain and threat of danger." Most days are good, but I am so immediately reminded of my situation when they are not.
I realized at some point in the last month that I have done so little for myself in the last year of my life. I have seen at least 8 different medical professionals (multiple times) in the last year. I have tried acupuncture, chiropractors, physical therapy, drugs, yoga, and new diets. I have been working two jobs to save money for my family and saving my days off in case I need them for some unforeseen disaster. I have thought about what drugs I might go on and how that would change my thoughts on my family planning timeline. I have been buying a house, loosing a house, buying another house. I have been trying to "get by" and at some point stopped living my life. I lost my spontaneity out of fear and caution. I don't know what to do anymore, but somehow I felt responsible to do all of the things in my life to prepare myself for the unknown. How do you even do that? Prepare for the unknown I mean... The answer is that you can't, but I have been trying desperately to do so... Like that is easier somehow then connecting with how I feel today.
I want to take my AS on head on, but really it should be to make today better, with the hope that it will continue to make things better in the future. I want to do more for me; more living. More of being myself. More dancing, more reading, more baths, and more time for me. I want to remember what it is to be in tune with how I am feeling and what I want. I want to stop living in fear and preparation for the unknown, and instead start doing things for myself again... because I want to, not because I need to.
I can't control it. But, there are many things I can't control... There are some scary, unknown things on the horizon for me, but what am I going to do about it today? How can I make this moment of my life easier and more enjoyable? That is what I am going to work on asking myself. I don't want to live in fear I want to live in a way that I am always trying to make this shitty circumstance a way to be better in tune with my wants and needs. This is my challenge, my battle, but it does not have to take over my life with fear. I need to start recognizing the moments in which I am living in fear and address those differently. I have to accept that there are things I will not know today, or maybe even tomorrow, and I can't control that. I need to address what will make me happier right now and what will make me deal with my AS in a positive way today... one day at a time. It's easier said than done, but now I am thinking about the things that make me happy and distract me at the same time. Those things make me feel like I am living again and like the moment I am living in is all that matters.
So for #honestoctober... well, honestly... I am scared. And that is how I am feeling today. Each day is different, but for today I am scared because I don't like that my Rheumatologist told me that my drugs don't prevent flares, they only decrease my inflammation. I have been lucky enough to not have to take any immuno-suppressents or biologicals yet. I don't like that I could have a flare at any time and that shouldn't be unexpected. I am fearful of deep achy pain that has become more present. I am fearful of my lack of sleep and increase of fatigue. I am fearful of having to retake blood tests. I am fearful of the wearing I have been feeling. And that is what I need to address for today. Rather than the fear of what all that means for me in the future, I am trying to address how to make that fear better today. Like I said, every day is different.... today I am battling the fear, and I am trying to make that better.
This journey won't alway be interesting or new, but it is what it is. It's what I am dealing with and it's what I live. But, it already feels better getting that off my chest. You can still be strong and scared at the same time. I think being brave means that you are aware of the risks, the pain, and the battle ahead... you completely recognize the fear in you, and yet... you move forward. You fight on. Onwards and upwards. Tomorrow is a new day, and sharing will be my strength in all the fear.
XO
Amanda
Can I just be honest for a second? I am scared.
Okay... there I said it, I think out of everyone, I have been the most afraid to admit that to myself. But, it is true. As I have said before, the worst thing about all of this is the unknown. I am trying everything I can think of to stop this disease, prolong my mobility, and live my life to the fullest, but sometimes I don't think I am addressing the emotional part of all of it. I have been diagnosed with an inflammatory arthritis that will attack my spine every day of my life. My body will attack itself, without realizing it. It will fight to steal my youth, my mobility, and my ability. I will live in and with pain. How do you come to terms with news like that? Am I doing that? Sometimes I don't know if I am dealing with it, avoiding it, or pretending I am doing either one of those things. I don't want anyone to feel sorry for me, but I also don't want anyone to think it's easy... It's a complex place I have found myself. I have immense fear of it and sometimes, the only way I think I can avoid that fear, is pretending that this isn't happening to me. But, when I do that... I seem to be brought back to reality by some physical disaster and its like a severe collision into my life.
Honestly, I can't take anything else with my health. I am seeing more doctors than I have ever in my life. I spend so much of my money and time on my health care trying to fight this thing head on. I have had my body respond in such weird ways in the last year of my life, and I have no idea what is related to my AS and what is not. I don't know what is just stress, life, womanhood.... And I have no idea what this disease is truly doing to me on a daily basis.
I am in fear. I want to "pull far away from it and usually hide." I feel that I must try to "survive" in response to the "pain and threat of danger." Most days are good, but I am so immediately reminded of my situation when they are not.
I realized at some point in the last month that I have done so little for myself in the last year of my life. I have seen at least 8 different medical professionals (multiple times) in the last year. I have tried acupuncture, chiropractors, physical therapy, drugs, yoga, and new diets. I have been working two jobs to save money for my family and saving my days off in case I need them for some unforeseen disaster. I have thought about what drugs I might go on and how that would change my thoughts on my family planning timeline. I have been buying a house, loosing a house, buying another house. I have been trying to "get by" and at some point stopped living my life. I lost my spontaneity out of fear and caution. I don't know what to do anymore, but somehow I felt responsible to do all of the things in my life to prepare myself for the unknown. How do you even do that? Prepare for the unknown I mean... The answer is that you can't, but I have been trying desperately to do so... Like that is easier somehow then connecting with how I feel today.
I want to take my AS on head on, but really it should be to make today better, with the hope that it will continue to make things better in the future. I want to do more for me; more living. More of being myself. More dancing, more reading, more baths, and more time for me. I want to remember what it is to be in tune with how I am feeling and what I want. I want to stop living in fear and preparation for the unknown, and instead start doing things for myself again... because I want to, not because I need to.
I can't control it. But, there are many things I can't control... There are some scary, unknown things on the horizon for me, but what am I going to do about it today? How can I make this moment of my life easier and more enjoyable? That is what I am going to work on asking myself. I don't want to live in fear I want to live in a way that I am always trying to make this shitty circumstance a way to be better in tune with my wants and needs. This is my challenge, my battle, but it does not have to take over my life with fear. I need to start recognizing the moments in which I am living in fear and address those differently. I have to accept that there are things I will not know today, or maybe even tomorrow, and I can't control that. I need to address what will make me happier right now and what will make me deal with my AS in a positive way today... one day at a time. It's easier said than done, but now I am thinking about the things that make me happy and distract me at the same time. Those things make me feel like I am living again and like the moment I am living in is all that matters.
So for #honestoctober... well, honestly... I am scared. And that is how I am feeling today. Each day is different, but for today I am scared because I don't like that my Rheumatologist told me that my drugs don't prevent flares, they only decrease my inflammation. I have been lucky enough to not have to take any immuno-suppressents or biologicals yet. I don't like that I could have a flare at any time and that shouldn't be unexpected. I am fearful of deep achy pain that has become more present. I am fearful of my lack of sleep and increase of fatigue. I am fearful of having to retake blood tests. I am fearful of the wearing I have been feeling. And that is what I need to address for today. Rather than the fear of what all that means for me in the future, I am trying to address how to make that fear better today. Like I said, every day is different.... today I am battling the fear, and I am trying to make that better.
This journey won't alway be interesting or new, but it is what it is. It's what I am dealing with and it's what I live. But, it already feels better getting that off my chest. You can still be strong and scared at the same time. I think being brave means that you are aware of the risks, the pain, and the battle ahead... you completely recognize the fear in you, and yet... you move forward. You fight on. Onwards and upwards. Tomorrow is a new day, and sharing will be my strength in all the fear.
XO
Amanda
Thursday, August 29, 2013
Tame the attacker.
As many of you know, I have been in a pretty significant flare the last few days. I have been lucky enough to have not had any significant pain in almost 9 months... but here I am. I felt that this... this moment and pain, this first, real flare after my diagnosis, would be an important thing to document.
Truth is, I worried about this moment breaking me. I did not know where or when it might take place, but I worried I would not be mentally prepared for it. There is some sort of deep connection between the physical and the emotional. They communicate and feed off of each other. When one is depressed, they are many times fatigued, disconnected, and sluggish. When you are physically exhausted, many times you are stressed, impatient, and grouchy. Maybe this is just something I notice in myself, but the human body and the human emotion are a communicating being that help decide the you that you are going to be that day. Anyways, I was broken, but only in the moment. I let myself feel my weakness, recognize my pain. And I felt it... I truly felt it. I was connected to the disappoint I had in being in that state, and the absolute drain of energy it takes to try and get out of it. Acknowledging that it was disappointing to be in this place allowed me to feel that, and then let it go. I could then asses what my physical body needed... what it was trying to communicate to me.
A couple weeks ago, I had the great opportunity to work with Manouso Manos, one of the most prestigious Iyengar teachers in the world. This opportunity opened new doors to my understanding of yoga and the poses I regularly work in, but more than that... I gained an emotional understanding of yoga, and my disease. Manouso stated that one of the biggest mistakes that people with chronic illness and autoimmune diseases make is that they feel they should "attack" the disease head on. That they should fight it and yoga (or some other medication, exercise, etc.) will be their weapon. There is no cure all for A.S. There is no wonder drug, or magic diet, or exercise I can do to stop it... or kill it... or make it never come back. It is a part of me.
My body is ATTACKING itself, why should I attack back? I have believed for so long that in order to be successful at something or better my life in some regard, I must ATTACK the challenge ahead of me. "I must conquer the disease" has been the mindset that I have had, hoping that it would make me stronger and keep me away from symptoms... That workshop opened a whole new way for me to think about this disease and what my body is going through.
Manouso personally gave me an analogy about my A.S. He told me that if I had a wild animal, I would not beat, attack, or over work this animal expecting it to do what I want... at least not with the results I wanted. I would nurture the animal. I would take care of it, love it, and find a way to communicate with it so that I could get the desired actions from the animal. Perhaps not everyone treats animals in this way, but those who have the best relationships with animals do. The same goes for our bodies. Those who listen to their bodies and nurture their bodies, those are the people with the tools for success. Every day is a learning experience in which I need to be communicating with my A.S. and become aware of what my body is trying to tell me. I will not be able to fight off my A.S. and yoga will certainly not stop me from ever having a symptom again, but it will be the tool I have to stay mobile through my pain and potentially help me work out of the pain. I will know if a back bend feels good or whether a restorative pose will bring back the energy I need as a result of this ongoing battle within.
My diet, the yoga, the medication... these are all tools for me to aid my body and work within that communication. This flare has been horrible, painful, and physically draining. It keeps me from doing all of the physical things that help me relieve stress and live my daily, normal life. But, this flare is giving me the opportunity to communicate with my body. See what yoga works while I am flaring, to bring back in the physical therapy and see how that helps, to watch how the diet changes or doesn't change the symptoms... It gives me the opportunity to communicate with my A.S. and strengthen my knowledge for the future. This flare is a result of the ongoing war... my body against my body, but I will not let my knowledge and my emotions go to war. I want them to tame the attacker, to work with the disease to find ways through the worst of it and grow from each experience. If I do this, I may get to a place where yes, I have A.S., but I am managing it... working with it to a place of peace on most days. That way I can continue to have A.S., but not let it take me to battle and weaken what I still have control over.
It doesn't always have to be a fight. That is an emotionally and physically draining state to constantly be in. When the pain comes back and shoots from spine to my toes, I feel defeated in the attack. Today, I choose to look at this as the opportunity for a gained awareness of my body and opportunity to nurture it just a little bit more. I will not fight this flare, I will work through it and with it to a place where I feel better. And then, I will have the knowledge in how to move forward the next time I find myself in this painful, scary place.
Thanks for reading.
XO,
Amanda
Truth is, I worried about this moment breaking me. I did not know where or when it might take place, but I worried I would not be mentally prepared for it. There is some sort of deep connection between the physical and the emotional. They communicate and feed off of each other. When one is depressed, they are many times fatigued, disconnected, and sluggish. When you are physically exhausted, many times you are stressed, impatient, and grouchy. Maybe this is just something I notice in myself, but the human body and the human emotion are a communicating being that help decide the you that you are going to be that day. Anyways, I was broken, but only in the moment. I let myself feel my weakness, recognize my pain. And I felt it... I truly felt it. I was connected to the disappoint I had in being in that state, and the absolute drain of energy it takes to try and get out of it. Acknowledging that it was disappointing to be in this place allowed me to feel that, and then let it go. I could then asses what my physical body needed... what it was trying to communicate to me.
A couple weeks ago, I had the great opportunity to work with Manouso Manos, one of the most prestigious Iyengar teachers in the world. This opportunity opened new doors to my understanding of yoga and the poses I regularly work in, but more than that... I gained an emotional understanding of yoga, and my disease. Manouso stated that one of the biggest mistakes that people with chronic illness and autoimmune diseases make is that they feel they should "attack" the disease head on. That they should fight it and yoga (or some other medication, exercise, etc.) will be their weapon. There is no cure all for A.S. There is no wonder drug, or magic diet, or exercise I can do to stop it... or kill it... or make it never come back. It is a part of me.
My body is ATTACKING itself, why should I attack back? I have believed for so long that in order to be successful at something or better my life in some regard, I must ATTACK the challenge ahead of me. "I must conquer the disease" has been the mindset that I have had, hoping that it would make me stronger and keep me away from symptoms... That workshop opened a whole new way for me to think about this disease and what my body is going through.
Manouso personally gave me an analogy about my A.S. He told me that if I had a wild animal, I would not beat, attack, or over work this animal expecting it to do what I want... at least not with the results I wanted. I would nurture the animal. I would take care of it, love it, and find a way to communicate with it so that I could get the desired actions from the animal. Perhaps not everyone treats animals in this way, but those who have the best relationships with animals do. The same goes for our bodies. Those who listen to their bodies and nurture their bodies, those are the people with the tools for success. Every day is a learning experience in which I need to be communicating with my A.S. and become aware of what my body is trying to tell me. I will not be able to fight off my A.S. and yoga will certainly not stop me from ever having a symptom again, but it will be the tool I have to stay mobile through my pain and potentially help me work out of the pain. I will know if a back bend feels good or whether a restorative pose will bring back the energy I need as a result of this ongoing battle within.
My diet, the yoga, the medication... these are all tools for me to aid my body and work within that communication. This flare has been horrible, painful, and physically draining. It keeps me from doing all of the physical things that help me relieve stress and live my daily, normal life. But, this flare is giving me the opportunity to communicate with my body. See what yoga works while I am flaring, to bring back in the physical therapy and see how that helps, to watch how the diet changes or doesn't change the symptoms... It gives me the opportunity to communicate with my A.S. and strengthen my knowledge for the future. This flare is a result of the ongoing war... my body against my body, but I will not let my knowledge and my emotions go to war. I want them to tame the attacker, to work with the disease to find ways through the worst of it and grow from each experience. If I do this, I may get to a place where yes, I have A.S., but I am managing it... working with it to a place of peace on most days. That way I can continue to have A.S., but not let it take me to battle and weaken what I still have control over.
It doesn't always have to be a fight. That is an emotionally and physically draining state to constantly be in. When the pain comes back and shoots from spine to my toes, I feel defeated in the attack. Today, I choose to look at this as the opportunity for a gained awareness of my body and opportunity to nurture it just a little bit more. I will not fight this flare, I will work through it and with it to a place where I feel better. And then, I will have the knowledge in how to move forward the next time I find myself in this painful, scary place.
Thanks for reading.
XO,
Amanda
Sunday, July 28, 2013
It's the kind of tired that sleep can't fix...
I am 25 years old. I am 25 years old and most days, I feel so disconnected from that age. I don't know how it might feel to be in my 30s, 40s, 50s... or even in my 60s, 70s, and 80s... but I do know I don't feel 25. My mornings are slow. Its hard to get out of bed. I am exhausted. Most of the time sleep doesn't feel very restful anymore. Some days are better than others, but most days I am wondering why I feel so drained... like I have been pulling all-nighters multiple nights in a row. Beyond feeling unrested, the morning is the worst time for my AS. I can barely roll over or sit up due to the stiffness in my back and hips. I feel frozen or like I climbed a mountain the day before. I don't have the severe, sharp pain I was having, but I am very aware of the difference I feel now compared to a few short years ago. It seems harder every day to get going, and get motivated. I usually try a few stretches, maybe a hot shower, but really I just have to wait for my body to catch up to the idea that we can't sleep forever. That I can't afford to hide in the covers all day and sleep the pain, the stiffness, the fear, and tiredness away. It doesn't really matter if sleep 5 hours, 10 hours, nor a whole day though... It's the kind of tired that sleep doesn't fix.
Having a chronic disease is exhausting. It is a constant battle happening within yourself, and it will never stop. There may be periods of remission, or things that you can do to help quiet the pain... but it is a part of you forever. That in itself, is such an exhausting thought. Even though I feel so tired, so often, it is hard for me to relax and let go into the place where I get the most rest. Its hard to fall asleep or face the night. I try to get comfortable, not think too much, and just let go... My body holds on. I can feel the tension in my muscles, my ligaments, and even down into the center of my bones. I have to mentally work with each part of my body to help it let go... to release whatever it is my body seems determined to hold on to. Sometimes it feels like my body is holding on so tight to protect itself, out of fear or something else, but it does not realize the damage it does in return. By hanging on and fighting so hard, I don't feel I am ever recuperating theses days. I just feel so tired. Its hard to remain positive the more exhausted you feel.
Sometimes I find it hard to differentiate whats happening in my personal life and what is just a symptom of the disease. I know that fatigue and trouble sleeping is a part of AS... it has been something I battled with when my symptoms first started. However, I also know that when I got on medication that seemed to really help the inflammation and pain, it seemed to help with the sleep as well. The more that my life becomes more exhausting or stressful, the more I am noticing the symptoms start to rear their ugly heads. Perhaps there really is no differentiation and the two or always in complete communication. I have to believe that stress and the disease are working together to wear me down... and the hardest part is figuring out how to have the energy to fix it. Having the energy to problem solve and know what to do in my life to fix it seems like an exhausting thought. Sometimes you just feel that you are trying so hard to do what you have to do and, at the same time, trying to take care of yourself in the process.
I want to be able to be off of my drugs. I am still only taking the 7.5 mg of Meloxicam, but my goal is not be dependent on it for pain/symptom relief. That being said, I haven't had the medication in 3 days and my hip is starting to ache the most it has in months. If I am being totally honest with you, it actually just makes me want to break down and cry. Something about the pain in this disease is so disheartening and draining. It makes me feel physically, mentally, and emotionally weak. It is the kind of tired that sleep can't fix.
I want a good book, a week off, and maybe a little bit of wine. I want a beach chair and an afternoon nap. I want just a couple of sweet days off with my husband where we aren't trying to have a relationship between work, school, and second jobs. I want the energy and reassurance to tell myself that this is a bad patch, and well.. they are going to happen. I can't fix everything at once and my exhaustion is sadly making me think that I have to for some reason.
AS is an exhausting disease. It is hard to get out of bed in the morning. It feels like I have aged decades overnight. My nights are restless, and my body continues to hang on when all I want it to do is let the day, the week, and even the last year go. My mind is racing with the possibilities, the effects of the drugs, work, my physical well being, and the future of our family. My emotions are strung out, and most days I feel like I am compromising to loose the little bit of my youth I have left. AS is the kind of tired that sleep can't fix...
It's the kind of tired that only I can help fix. It's the yoga that teaches me to talk to my body and help it let go. It's knowing that the medication is okay for now, especially under this period of stress... and that I will find another time in my life to try to go without it. It's letting myself sleep when I can and knowing that every once in a while, sleeping in until 10 a.m. could be a life saver. It's picking one thing at a time battle instead of the whole war. It's doing something for me every once in a while and letting myself feel young...
AS is exhausting. And sadly, it has been more exhausting lately. The mornings have been harder and I have had less restful sleep. I am feeling completely drained and emotional about these symptoms, and honestly life in general. This is part of the journey and what I am hoping for is to grow from it. In the meantime, if I seem cranky, well I probably am. We could all use a little compassion, understanding, and patience from our loved ones. I can think of no better treatment for myself. I just need to remember that as much as I need this from others, I need it most from myself. Hoping for a better week as this one comes to an end. It's the kind of tired a little self-love and compassion just might fix...
Amanda
Having a chronic disease is exhausting. It is a constant battle happening within yourself, and it will never stop. There may be periods of remission, or things that you can do to help quiet the pain... but it is a part of you forever. That in itself, is such an exhausting thought. Even though I feel so tired, so often, it is hard for me to relax and let go into the place where I get the most rest. Its hard to fall asleep or face the night. I try to get comfortable, not think too much, and just let go... My body holds on. I can feel the tension in my muscles, my ligaments, and even down into the center of my bones. I have to mentally work with each part of my body to help it let go... to release whatever it is my body seems determined to hold on to. Sometimes it feels like my body is holding on so tight to protect itself, out of fear or something else, but it does not realize the damage it does in return. By hanging on and fighting so hard, I don't feel I am ever recuperating theses days. I just feel so tired. Its hard to remain positive the more exhausted you feel.
Sometimes I find it hard to differentiate whats happening in my personal life and what is just a symptom of the disease. I know that fatigue and trouble sleeping is a part of AS... it has been something I battled with when my symptoms first started. However, I also know that when I got on medication that seemed to really help the inflammation and pain, it seemed to help with the sleep as well. The more that my life becomes more exhausting or stressful, the more I am noticing the symptoms start to rear their ugly heads. Perhaps there really is no differentiation and the two or always in complete communication. I have to believe that stress and the disease are working together to wear me down... and the hardest part is figuring out how to have the energy to fix it. Having the energy to problem solve and know what to do in my life to fix it seems like an exhausting thought. Sometimes you just feel that you are trying so hard to do what you have to do and, at the same time, trying to take care of yourself in the process.
I want to be able to be off of my drugs. I am still only taking the 7.5 mg of Meloxicam, but my goal is not be dependent on it for pain/symptom relief. That being said, I haven't had the medication in 3 days and my hip is starting to ache the most it has in months. If I am being totally honest with you, it actually just makes me want to break down and cry. Something about the pain in this disease is so disheartening and draining. It makes me feel physically, mentally, and emotionally weak. It is the kind of tired that sleep can't fix.
I want a good book, a week off, and maybe a little bit of wine. I want a beach chair and an afternoon nap. I want just a couple of sweet days off with my husband where we aren't trying to have a relationship between work, school, and second jobs. I want the energy and reassurance to tell myself that this is a bad patch, and well.. they are going to happen. I can't fix everything at once and my exhaustion is sadly making me think that I have to for some reason.
AS is an exhausting disease. It is hard to get out of bed in the morning. It feels like I have aged decades overnight. My nights are restless, and my body continues to hang on when all I want it to do is let the day, the week, and even the last year go. My mind is racing with the possibilities, the effects of the drugs, work, my physical well being, and the future of our family. My emotions are strung out, and most days I feel like I am compromising to loose the little bit of my youth I have left. AS is the kind of tired that sleep can't fix...
It's the kind of tired that only I can help fix. It's the yoga that teaches me to talk to my body and help it let go. It's knowing that the medication is okay for now, especially under this period of stress... and that I will find another time in my life to try to go without it. It's letting myself sleep when I can and knowing that every once in a while, sleeping in until 10 a.m. could be a life saver. It's picking one thing at a time battle instead of the whole war. It's doing something for me every once in a while and letting myself feel young...
AS is exhausting. And sadly, it has been more exhausting lately. The mornings have been harder and I have had less restful sleep. I am feeling completely drained and emotional about these symptoms, and honestly life in general. This is part of the journey and what I am hoping for is to grow from it. In the meantime, if I seem cranky, well I probably am. We could all use a little compassion, understanding, and patience from our loved ones. I can think of no better treatment for myself. I just need to remember that as much as I need this from others, I need it most from myself. Hoping for a better week as this one comes to an end. It's the kind of tired a little self-love and compassion just might fix...
Amanda
Friday, June 21, 2013
Acceptance
"Acceptance of one's life has nothing to do with
resignation; it does not mean running away from the struggle. On the contrary,
it means accepting it as it comes, with all the handicaps of heredity, of
suffering, of psychological complexes and injustices." -Paul Tournier
Lately, I have been thinking about acceptance and what that
really means. Over the course of my short 24 years (25 next month : P) on this
earth, I have had various troubles with acceptance. Accepting my parents’ divorce
was the first real challenge of acceptance that I remember encountering in my
life. It is hard to know the balance of working through an issue, and avoiding
it. Sometimes, I think my form of acceptance has been learning to live without
thinking about that something... as if it does not affect me. But, I am not
really sure that is "acceptance" at all.
A.S. is my reality, but I think most days I find myself
crawling into the hole of "maybe this isn't really happening to me."
I talk about it, I blog about it, I think about it... but many days I try to
pretend I am not LIVING with it. Sometimes, I think my stiffness and pain…
Well, just maybe that is from a new work out. And maybe the starch won't hurt
me since there isn't any "real" research to support the diet aiding
in the disease... I find myself thinking about why this could have happened to
me. What I did to trigger the disease in myself, as if I ever had control over
it. I think about how to avoid it as a lifestyle, rather than accept it.
My NSAID has made such a difference in the sharp, unbearable
pain I was having. That pain took over my whole body. I would take a step...
and it was if a snake of sharp jagged knifes ripped through my heel, tore past
my knee, left my thigh completely numb, and coiled deep into my SI joint until
it triggered every nerve into full agony. From there it made a straight shot
into my skull leaving me physically and mentally useless in helping myself. My
NSAID has made me comfortable, which I am extremely grateful for, but I worry
about being too comfortable. I am worried that being too comfortable will keep
me from accepting the long journey and battle ahead. I am worried I will forget
that pain. I am worried that I will not be dedicated to my other life changes,
and when my next flare comes… I will break down. I fear the break down because
I am not sure I am emotionally prepared for it at this point. I have this small
voice telling maybe it won't ever happen again. I am not sure I am not ready
for a time when a drug does not solve the worst of my symptoms.
I know that it is all about taking it one day at a time, but
I don't ever want to leave many days at rest, not preparing for the next war.
This is a disease where I think avoiding its reality may be the worst course I
could take. I think I need to be extremely proactive to save my body, it just
can get exhausting when every day seems like preemptive battle. But honestly, I
just don't know what I am doing... and that in itself is terrifying. I am
pulling at strings as to what might help me, what might save my back. I love my
back, you know? It's not really something you think about until you think about
your spine not being a part of you... not moving with you. I love that I can
bend, twist, jump, curl, twirl, somersault, back bend, halasana (plow pose),
arch, flip... not only do I, as a person, love to move... but I have such an
appreciation for how my spine moves me and moves with me.
My exhaustion is growing. But, how much I sleep is not...
Falling asleep and waking up are the worst... I think this stealing the motivation
I have left and letting me fall of being “comfortable” with the NSAID... I
don't want that. My goal is to be off of the NSAID at the end of the year,
and... I don't want to take anything else. At least not for now... It’s naive
to think that modern medicine isn't a helpful and an essential tool in this
disease, but it’s just as naive to believe that you can't make changes in your
daily life to help control the symptoms. But, it is hard. It is the hardest
part of all of this. You live your life a certain way, for your whole life, and
then you find out that this new part of your identity is going to help dictate
the way you live the rest of it. Some days I tell myself "Que sera,
sera." Other days, I just cry... and those days almost always take me by
surprise.
I think a huge part of acceptance, for me, is the emotional
component of it. How do I feel about it? Why do I feel that way? How do I work
through that? How do I feed the emotional needs of this disease to keep me
motivated and happy? Lately, I feel that I have been thinking about what I HAVE
to do. What in my life I have to get in order before I go on drugs that scare
me. What I shouldn't be eating. What I may not be able to do. What vitamins I
should I take.... everything is a chore! Of course I am exhausted. Of course I
am losing motivation. This is not the way to think about the challenge I have
ahead of me, nor the one I am facing today. I need to accept my life and think
about ways to better it. What can I do to better my situation, not what I have
to do to "deal" with my situation?
I want to accept the identity of being an A.S. patient and
make something of it. I will be a better person because of this, I can already
feel it. I am now meeting some other physical needs that my body has needed for
years. I have a new awareness and now, I need to accept that. And integrate it
so that it is not a chore, but simply a way of life... like I don't know any
different, therefore I embrace it. I may not get there today, and maybe I will
not be there every day... but I am identifying the problems with the way I am
thinking about my A.S. today. I think that will be one of my strongest tools in
the battles ahead.
I need to accept my body for what it is, and challenge
myself to see it as a gift. I have been blessed, not cursed. I will cherish and
take care of myself that much more now... I need that. Use today to see what
you can accept and grow from in your own life. You are bound to surprise
yourself...
Hugs,
Amanda
Tuesday, April 23, 2013
The Positive Challenge
Having AS has created a time of my life in which I am experiencing more self-discovery, emotion, and growth than I have at possibly any other time in my life. I find myself thinking about the world and how it affects me in a completely different way these days. And my emotions seem to be all over the place! I have been trying so hard to be positive, take it one day at a time, and fight the fight… but sometimes it is overwhelming to think how I will be doing this the rest of my life… fighting for the rest of my life.
I try to remind myself that “worrying doesn’t stop the bad
stuff from happening; it just stops you from enjoying the good.” I can’t change that I have AS, and I can’t
control that it will be with me for the rest of my life. I still find it
challenging to come to terms with the idea that this is not a phase I am going
through… I want to believe that if I work hard and try the diets, the medicine,
the doctors, the yoga, the research… that I will get through it and go back to “normal.”
Is there such a thing anyways? What is normal? We all have our own battles,
complications, and trials. This one is mine. This is my dark cloud, my
thunderstorm, my challenge. I have AS, but the real challenge is in making sure
that it does not have me.
I want to be remembered as a positive person, a game
changer, a love spreader… I want to be inspiration for others… I want AS to
make me a better person, not a person that neither I nor anyone else should
feel sorry for. This is my moment, and AS will not define me, but how I handle
it will.
So, I have to look at the world differently… Can my food
change the course of my disease? Will yoga save my mobility and help me bring
awareness to my body? Does the course of this disease change what I want in my
life and what my priorities are? Are the drugs out there worth the risk? Are
they worth the side effects on my own body? Are they worth what that might mean
for future family planning? What is the cause of my exhaustion, and is it
physical or mental exhaustion that I feel most days? What does it mean to be strong?
I heard a quote in a movie I watched this weekend: “you don’t
choose your life, you live your life.” I did not choose this disease; who
would? But it is a part of my life. How I live with this disease is up to me.
The biggest battle is to not let the diagnosis, the hard days, or the
challenges ahead get the best of me. The challenge is to truly live with the
disease, rather than wallow in it. I must find ways to remain positive and
focused on the day in front of me. There is no need to let multiple days gang
up on me when I have yet to face them, and when I have yet to see what they
have to offer.
Life is an unpredictable journey. Sometimes it provides you
with beauty, and sometimes tragedy, but you control the course of your own
journey from that in which you encounter. Take the beauty, take the tragedy, and
make it your lesson and compass for the rest of your journey. AS is my
opportunity. It is my growing point… Having this disease is so hard. I wish I
could describe the pain that I feel, the ache in my little, 24 year old body… It
is emotionally trying and daunting. It’s completely unfair. Most days I feel
that I was robbed of something. Robbed of my youth and being carefree… Robbed
from eating what I want, doing what I want, and having all the time in the
world to make major decisions for my family, well-being, and career. But this
feeling of AS robbing me of my life and opportunity will do nothing but create
a course set for disaster. I will only let this one thing define me for the
rest of my life… and I don’t want to live like that.
That is why AS is my opportunity. It is the opportunity to
change the course of my life forever, and for the better. I have to remain
positive so that this will not define me, but rather invigorate me. I will know
my body better and take better care of it. I will bring awareness to this
disease, so that others might find early diagnosis and intervention. I will eat
better and make it a priority in my life, which will help more than just the AS.
I will create strong personal boundaries and remember that I am the most
important thing I can invest in. I will put my family first and take the major
decisions one step a type. I will process through my thoughts in this blog and
hopefully inspire others to be positive, no matter what their challenge may be.
I will have a better understanding on how important it is to be grateful for
the simple joys in being active and moving. I will have more mobility and self-awareness
than I did even before I was diagnosed thanks to my yoga practice. I will be
better in doing what’s best for me. I will find more ways to be happy and grow
from the tough times.
It’s all easier said than done, but I have a plan. It’s my
challenge… to be positive even in the darkest of times. If it wasn’t this, it
would be something else. I challenge you to live the same way. We all have
pain, heartache, challenges, and downfalls. Use them as your opportunity to
grow and to better yourself. At the end of the day, you are the most important
thing you have. Take care of you, nurture you, and remind yourself… it’s going
to be okay, but only if you believe so.
Fighting the battle, one day at a time…
Amanda
Tuesday, March 19, 2013
Maintenance
The human body is a machine. It requires energy and fuel. The body has parts and systems, and it moves. The body has electrical charges and it radiates heat. The body pumps blood and excretes fluids. The human body processes feelings and information. It also puts out information and creates many things. The body is a machine, and just like any machine, it needs to be maintained to operate at its best and highest level. If it is not properly maintained, it will break down. You will have to fix it...
Maintenance... that's where I am in my treatment plan, my discovery, and my journey. I am so happy to be done with the diagnosis part of all of this... I don't want any more scans, pictures, procedures, or new doctors added to my everyday life. I am EXHAUSTED, and it hit me like a ton of bricks this last week. You know how it is when you tell yourself "Everything will be fine" and you just keep going? You keep putting your body through tests, pictures, and invasive procedures. You drink horrible radioactive materials, fast from food, and wear it down. You clear it out, beat it up, take away food, add new food and its all in the name of "science and discovery." These are the ways to find the answers... and I am so tired.
I do not have Crohn's, but I do have small ulcers in the lining of my small intestine that are likely being caused by my NSAID. Before I had my colonoscopy that confirmed this information, I had to go off of my anti-inflammatory for 7 days. By day 5, I was in a horrible flare. Between my diet being starch FULL and no anti-inflammatory, I was not in a good situation for avoiding the pain. I couldn't walk, sit up, roll over, or sneeze without wanting to break down and cry. I told myself to be brave, to be tough, and that it was almost over. I put my body through so much stress since January trying to confirm my diagnosis and ruling out other diagnoses. I don't think I realized how hard it would be to do all of this and maintain two jobs at the same time. Last Thursday, my body broke down... I woke up with a sore throat and worried that I might be getting sick. By 2:30 that afternoon I felt so ill. My body was shaking from the chills and my entire back ached as if every muscle had been through a strenuous work out. My head was pounding and my stomach went in and out of nausea.... I stayed home sick that night and just laid on the couch with a heating pad. I tried to block out all the pain and sensation running through my body. I tried to sleep, but it was too intense. When Brian got home around 9:00 p.m. that night, he found that I had a 101 degree temperature. I could tell that it had come down from earlier because I did not feel nearly as cold. The next morning I woke up and the fever was completely gone. I felt like I had low energy, but not anything like the day before. I had a 24 hour viruses that hit my body with everything it had and I was too weak to fight it. Fast forward a couple days and I still have low energy with my first cold sore in FIVE YEARS.
My body is sending me a message. I AM TIRED. STOP. SLOW DOWN. How am I supposed to take care of my disease, let alone my everyday well being, if I don't stop and listen to what I am feeling and what my physical needs are? I tried to power through the emotions, the physical demands, and the weight of the disease(s) we were investigating. The funny thing about bodies is, just like a good machine, the will continue to run... even after missed maintenance. You may miss a meal or a night's rest, and just like a missed oil change on your car, your machine will continue to run. You can run this way for a while and everything will still seem to be operating just fine. You may miss some subtle signs that your machine is not running as efficiently as it could be, or that it is wearing down, but its still running... so you continue to push it. You continue to do this until it breaks down and you have no option but to repair it. Why do we push our bodies this way? Why do we continue to abuse the only machine that we have to get us through our future. It is amazing the things we choose to make priority over our health... In my case, I ignored my poor, overworked, over stressed, and WAY over examined body in the "name of health." How does that even make sense? I guess I was thinking about the future of my health, and in the process, I ignored the health I have today.
So, I am dedicating myself to a maintenance program. I am going to go to bed earlier and wake up earlier. I am going to stretch more and make movement an every day priority, rather than the after thought it has become over the last week or two. I am going to get back on a better diet for my disease soon and I am going to rest when I need it. I am going to do things for myself and be done with the poking and prodding. I HAVE AS. I do not have Crohn's and I know that I could still develop it, but that is not an issue TODAY. I am going to maintain my body by moving, laughing more, making time to check in with myself... I am going to continue to take the drug that is proving to help me, but lower my daily dose. I will get occasional blood tests to make sure that the anti-inflammatory is not creating a bigger problem and my Rheumatologist said that he will work with my GI to make sure that the issues in my small intestine don't get any bigger. My anti-inflammatory is not a long term drug option for me, I know this... BUT it is the very minimum treatment that I can be doing, medication wise, for the disease. My Rheumatologist informed me that the drug does not only greatly help with my symptoms, but there is evidence to show that it effects the long term development of the disease... that's why I take it everyday and not "as needed." If I go off the anti-inflammatory I have to consider some other drugs that I am just not sure I am ready to consider yet...
Now that the diagnosis and discovery portion of this is over... for now... I can take a deep breath. I have AS. That's it. I can feel it, process it, and come to terms with it. I can LIVE with it. I don't have to worry about what else it may be or how it is presenting itself. It is a diagnosis that I have, but does not define me.... and now I can work on and address that. I don't have to worry about it being a different type of spondylitis, or that I have Crohn's as well. I don't have to wonder what else we could find to explain it. It is what it is and now I can just work on finding the best way to maintain it. I can figure out what works for me and what keeps me happy. I can spend some time getting to know the new me. The stronger me. The me that won't be defined by a label, a diagnosis, or an antigen. The me that can accept that I have AS and the same me that will prove AS does not have me. It's my time. Time to take care of me. Time to be selfish and properly prioritize my needs. Time to say enough is enough and move on. I have AS... no more guessing, discovering, or wondering... just time to maintain it, control it, and beat it. Time to take care of it and me.
Take care... xoxo
Amanda
Maintenance... that's where I am in my treatment plan, my discovery, and my journey. I am so happy to be done with the diagnosis part of all of this... I don't want any more scans, pictures, procedures, or new doctors added to my everyday life. I am EXHAUSTED, and it hit me like a ton of bricks this last week. You know how it is when you tell yourself "Everything will be fine" and you just keep going? You keep putting your body through tests, pictures, and invasive procedures. You drink horrible radioactive materials, fast from food, and wear it down. You clear it out, beat it up, take away food, add new food and its all in the name of "science and discovery." These are the ways to find the answers... and I am so tired.
I do not have Crohn's, but I do have small ulcers in the lining of my small intestine that are likely being caused by my NSAID. Before I had my colonoscopy that confirmed this information, I had to go off of my anti-inflammatory for 7 days. By day 5, I was in a horrible flare. Between my diet being starch FULL and no anti-inflammatory, I was not in a good situation for avoiding the pain. I couldn't walk, sit up, roll over, or sneeze without wanting to break down and cry. I told myself to be brave, to be tough, and that it was almost over. I put my body through so much stress since January trying to confirm my diagnosis and ruling out other diagnoses. I don't think I realized how hard it would be to do all of this and maintain two jobs at the same time. Last Thursday, my body broke down... I woke up with a sore throat and worried that I might be getting sick. By 2:30 that afternoon I felt so ill. My body was shaking from the chills and my entire back ached as if every muscle had been through a strenuous work out. My head was pounding and my stomach went in and out of nausea.... I stayed home sick that night and just laid on the couch with a heating pad. I tried to block out all the pain and sensation running through my body. I tried to sleep, but it was too intense. When Brian got home around 9:00 p.m. that night, he found that I had a 101 degree temperature. I could tell that it had come down from earlier because I did not feel nearly as cold. The next morning I woke up and the fever was completely gone. I felt like I had low energy, but not anything like the day before. I had a 24 hour viruses that hit my body with everything it had and I was too weak to fight it. Fast forward a couple days and I still have low energy with my first cold sore in FIVE YEARS.
My body is sending me a message. I AM TIRED. STOP. SLOW DOWN. How am I supposed to take care of my disease, let alone my everyday well being, if I don't stop and listen to what I am feeling and what my physical needs are? I tried to power through the emotions, the physical demands, and the weight of the disease(s) we were investigating. The funny thing about bodies is, just like a good machine, the will continue to run... even after missed maintenance. You may miss a meal or a night's rest, and just like a missed oil change on your car, your machine will continue to run. You can run this way for a while and everything will still seem to be operating just fine. You may miss some subtle signs that your machine is not running as efficiently as it could be, or that it is wearing down, but its still running... so you continue to push it. You continue to do this until it breaks down and you have no option but to repair it. Why do we push our bodies this way? Why do we continue to abuse the only machine that we have to get us through our future. It is amazing the things we choose to make priority over our health... In my case, I ignored my poor, overworked, over stressed, and WAY over examined body in the "name of health." How does that even make sense? I guess I was thinking about the future of my health, and in the process, I ignored the health I have today.
So, I am dedicating myself to a maintenance program. I am going to go to bed earlier and wake up earlier. I am going to stretch more and make movement an every day priority, rather than the after thought it has become over the last week or two. I am going to get back on a better diet for my disease soon and I am going to rest when I need it. I am going to do things for myself and be done with the poking and prodding. I HAVE AS. I do not have Crohn's and I know that I could still develop it, but that is not an issue TODAY. I am going to maintain my body by moving, laughing more, making time to check in with myself... I am going to continue to take the drug that is proving to help me, but lower my daily dose. I will get occasional blood tests to make sure that the anti-inflammatory is not creating a bigger problem and my Rheumatologist said that he will work with my GI to make sure that the issues in my small intestine don't get any bigger. My anti-inflammatory is not a long term drug option for me, I know this... BUT it is the very minimum treatment that I can be doing, medication wise, for the disease. My Rheumatologist informed me that the drug does not only greatly help with my symptoms, but there is evidence to show that it effects the long term development of the disease... that's why I take it everyday and not "as needed." If I go off the anti-inflammatory I have to consider some other drugs that I am just not sure I am ready to consider yet...
Now that the diagnosis and discovery portion of this is over... for now... I can take a deep breath. I have AS. That's it. I can feel it, process it, and come to terms with it. I can LIVE with it. I don't have to worry about what else it may be or how it is presenting itself. It is a diagnosis that I have, but does not define me.... and now I can work on and address that. I don't have to worry about it being a different type of spondylitis, or that I have Crohn's as well. I don't have to wonder what else we could find to explain it. It is what it is and now I can just work on finding the best way to maintain it. I can figure out what works for me and what keeps me happy. I can spend some time getting to know the new me. The stronger me. The me that won't be defined by a label, a diagnosis, or an antigen. The me that can accept that I have AS and the same me that will prove AS does not have me. It's my time. Time to take care of me. Time to be selfish and properly prioritize my needs. Time to say enough is enough and move on. I have AS... no more guessing, discovering, or wondering... just time to maintain it, control it, and beat it. Time to take care of it and me.
Take care... xoxo
Amanda
Subscribe to:
Posts (Atom)