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
