The struggles having a chronic illness
Hello my name is Nicky. I am 33 years old. I am a mommy to 3 kiddos that are my world and one of my reason for waking up every morning to keep pushing myself to be the best version I can be of myself.
Getting diagnosed for AS and fibromyalgia
It really hasn't been easy along this road getting diagnosed with ankylosing spondylitis (AS) and fibromyalgia all at the same time. Who knew my world would turn upside down. Whoever knew having a couple of bad days would lead to having a lot of bad days. Whoever knew this pain that came and went would be here to stay for the rest of my life. Whoever knew this illness would keep me away from my old life that I have to now create a whole new world that no one would understand. Create a whole new world for myself and my family. Create a life that I have to adapt to new limits and not feel guilty about.
Getting my diagnoses, I thought I would just take medication and would get cured just like that. No one told me I would have to keep fighting everyday in silence to find the right treatment and be my own advocate to figure out what works the best for me and my body. No one told me I would have to go through so many medical appointments or even different doctors that would actually listen. No one told me through all this journey would come along with lots of trial and error with medications that doctors throw at you and don't even have the right answers to what is going on with your body. Who ever knew that getting diagnosed with a chronic illness full of debilitating and symptoms every day would just keep you away from everything.
This journey is difficult, and eye opening
I know it all sounds like it's so terrible, but you know what? If it wasn't for this illness I would never have opened my eyes and see who truly cares. Who truly wants to understand what you are going through everyday just to feel a little normal in a world that makes you feel alone. In a world of people that can be so judgmental. If it wasn't for this illness I would have never learned the meaning of patience and appreciation. I have learned to appreciate the little things in life and stop rushing rushing. What is meant to be will happen on its own time. Everything happens for a reason.
You will feel so many emotions. Guilt is one of them. Guilt that you can't do everything you once were able to do. From the simplest things like groceries. I was once able to go to so many stores in one day. Now I am lucky if I can make it to get my groceries for the whole week. I used to be able to do so many things with my kids take them to the park, visit their grandparents, go out for dinner or lunch whatever you want to call it. Now I am lucky if I have the energy to get out of bed and brush my teeth. I can keep going on and on. You should get the point by now. Let me just say now on a good day, I am happy that I got to change from being in my pjs all day.
We’ve heard it all: what actually will help?
But having a chronic illness we get so tired of explaining and reexplaining to people that will never or try to understand. we hide it all deep inside because it can get exhausting. We rather put on a brave face and just say we are fine. We are good. It keeps us from feeling more disappointed from comments like:
- “It's all in your head.”
- "Did you try to exercise?”
- “Did you try to lose weight?”
- “Maybe you need to try and change your diet?”
I know so and so that has the same.... We are not all the same and what works for me won't work for everyone. I had to learn this the hard way. Trust me, if it was that simple we would already feel better. But it's not that simple. The struggles can be real. Because being in pain all the time is damn hard and the chronic fatigue that comes with it can feel like your body is giving up on you. But all I can say, is have hope that all this is for a reason. A reason that I can make someone else feel less alone. Because I know I am not the only one going through all this. We are fighters that strong is our power that keeps us going and makes us a warrior. If it wasn't for this illness I would of never gotten to know what it really means to be strong.
Does reading AxSpA patient stories help you in your journey?