Trying to Cope with Disease Progression
Updated: Jul 5
Saying the last few months have been difficult would be an understatement. I had been in and out of the hospital for over a month, eventually ending up admitted for a month of acute rehab leading to home care. I am back in my wheelchair and only able to walk short distances while using a walker and wearing full leg braces. I have been on a liquid diet due to abdominal pain and vomiting for about two months now. I'm hooked up to an IV for over 12 hours a day. I have never been this fatigued in my life and am trying to wrap my head around the fact that this might be my new normal.
I'm scared and angry and I have absolutely no idea what to do about it. All the independence I had was taken away from me. I have no control over my life and am filled with rage and frustration because of it. I have never been an angry person but its so hard to be ok with the fact that this disease has taken so much from me. Trying to cope with what has been going on has been the hardest thing I've ever gone through. I worked so hard to get to the point I was at in life and it was taken away from me in a blink of an eye.
The thing I want most during this phase of my life is peace of mind, but it is so hard to find peace with the current situation when you feel so alone. And I feel ridiculous for feeling alone when I know I have an amazing support system. I have great parents and an amazing best friend who all support me to the best of their abilities- but they aren't sick. They don't feel what I feel and because of that, I feel disconnected and alone.
My social life now consists of physical therapists, occupational therapists, and nurses caring for me in my home. And you know your social life is pretty depressing when the highlight of your day is your nurse coming. I don't feel like myself anymore. Everyday I'm less of what makes me who I am and more of a patient who needs constant care- someone who is constantly reminded that her illness has taken over every aspect of her life.
So the question is, how do I cope with everything going on and how do I get back to feeling like myself? I wish I had a good answer, but honestly, I have no idea. But I have hope. At the end of this moth, I'm going to the United Mitochondrial Disease Foundation's National Symposium in Washington D.C.. I don't think I've ever needed to be around people my age going through the same struggles as I am so badly before. So until then, I'll continue to go through the motions and hold onto hope.