Finding a Cure vs. Living Life
When you live with disability and or chronic illness, you can be so focused on finding that “cure” or thing that will make your life more like what it used to be. That thing that will make your symptoms more manageable or decrease your pain significantly.
Looking for these things can be so helpful, but in my journey I have found that there came a point when I had to stop spending so much mental energy and time looking for that magical thing that was going to make me more “normal.” I had to look at what this mindset was doing to my emotional well being and quality of life.
I started to try my best to look at things in a different light
I needed to start looking at my life and what I wanted it to look like with my chronic illness and disability. Not only do I have ankylosing spondylitis, I am totally blind. With my blindness and the progression of less and less sight I had to learn to adapt so that I could live the life that I wanted, and I started to take this approach with my AS.
There are symptoms and issues that come along with my chronic illness like fatigue, pain, nausea, secondary conditions that arise like psoriasis, and more. I had to ask myself: how am I going to accomplish what I want, despite these challenges?
I made a plan and it started with mindset
I had to remember that life doesn’t suck because of my AS, and my life isn’t over with AS. It is a challenge that has to be overcome, and I have to work within some parameters. I needed to be realistic with what I could do in a day, a month, and even a year. I had to be flexible with those plans and know that success was something I could determine and no one else. My success was not based on what others were able to accomplish, but what I could do.
I also had to learn to take care of me
Not looking for a cure, but doing the things I needed to do to make sure that I could have the best chance at reaching the goals and plans I had set out. Making sure that I was getting enough sleep, getting the best quality sleep that was possible with my condition. Eating in a way that made me feel good, making sure I was taking care of my mental health whether that be reaching out to a counsellor or journaling and surrounding myself with people who supported me.
There's no secret, just little steps
This does not mean that I have found the secret to a cure, or a miracle thing that makes AS go away, but rather taking little steps to be able to live my best life within the parameters of my chronic illness and disability. It's about realizing and accepting there may be some things I cannot do and that is ok. Like with being blind, I know and have accepted I will never be able to drive and that is ok, I can take public transportation and I need to plan ahead but that does not mean my life is less exciting and full.
We are individuals get to decide what our lives look like and how successful we are because we are the only ones that walk in our shoes every single day. That miracle that you spend all your energy looking for may not be out there but I can guarantee that happiness, contentment and life is out there waiting for you to live it.
How long was your longest flare?