I always thought when I started to find remission I would have my life back. I hear other friends say I just want to get back to the way things were before I got sick. Well I can't go back to when I was 8 years old when I first started having nerve pain and tummy troubles. I have to start over from scratch. I also kinda hoped the world would of stopped while I was fighting so that when I was done I could just lift the pause button. Again that's not what happens. So often we have myths that need to be busted about how we view chronic lyme/tick born disease. I am realizing as I head towards full remission that we have several myths we believe about recovery. I am feeling better but I am not fully recovered, 100% all done. I might look great for 5 days then hit a wall of fatigue and pain. This journey isn't done. I do have quality of daily life back which is a miracle considering all my diagnoses, years I've been sick, and all the stress from trying to survive and hold on through all of this. I think the biggest myth I believed in was I would be back in the land of the living fully, easily, without much effort. That's just not the case. I feel like I am waking up from a coma. Everyone around me has moved forward and I am stuck back in time somewhere. Its a bizzare science fiction nightmare. I realize and see the deficiets I am still dealing with as well. I never realized til now how much impact tick born illness has had on my muscles, nerves, brain, to the point I see its like recovering from a brain injury. You can recover to point but you will never be 100%. Some of the most basic daily tasks take extra effort for me to accomplish. I still have to adapt my current ability level with whatever I am trying to do. I am always researching ways to relearn old information, absorb new information, read, become organized, stay focused, etc. I stand in awe at how much this disease has ripped out of me. I feel like I have to now hit the restore button constantly. I still have stretches of time, memories, timeline of my life that is jumbled, lost or foggy. I still rely on my family to tell me what happened at certain events because I just don't remember. I was there but I have no clue sometimes what they are even talking about or it takes forever to jog my memory.
I keep joking that this part was not written in the lyme patient handbook. Remission, recovery, healing was suppose to be the holy grail. You made it to recovery and you had it made. Again more myths that I wish were reality. I think this is part that we need to talk about more. Remission doesn't mean we are all done and go back to way life used to be. I wish that was the case. I will never be the same. This illness has touched too much of my life. I am changed forever. For better or worse this illness have morphed me into something completely, radically different, than I ever imaged. I thought remission was a false hope. It was something only a few people achieved. Now I am here. I know how to deal with being sick but I have no clue how to be a somewhat healthy person. Its a radical concept to me. I can actually read a chapter in a book and remember what I read. Now that's the impossible happening. I couldn't do that for years. Even my actual handwriting is radically different from the beginning of treatment til now.
So now I feel like I am stuck on this island by myself thinking who am I now? what do I do with myself? where are my physical/cognative boundaries? Can I do that? Do I want to do that? I feel like I am living in a sea of questions. For so long I've had so many people tell me who I was according to them while I was super sick. I was lazy, disorganized, messy handwriting, shy, different, strange, talked for too much and too long, etc. When you hear these terms for so long you start to believe this is who you are. When you start to recover you realize that was the sick you, your illness not you. I have told friends its like there has always been two people within me. Sick Angele and Healthy Angele. Sick Angele has been the dominate figure within my world for so long that to kick her off the throne is beyond words. I can't explain how that feels. Its very conflicting. I feel like people want to hear I am so excited and happy to be closer to remission which a part of me is, but I am also at a loss as to what I am left with at the close of this crazy bumpy journey.
Even my son who is now 12 is surprised when I tell him that I am back to school too. I have to find new strategies for Executive Functioning, reading comprehension, calendars, Bullet Journaling, etc. I am relearning certain basic school facts all over again. Its a humbling place to be. I have never had a career in my life. And at almost 40, I see that I need to take classes and learn more for the work that I do now. I am honestly overwhelmed. Its like working double time. I have to relearn old information plus learn new information all at the same time just to keep up with the rest of humanity. I'm used to working 5 times harder to do the basic things most people do. Most people with chronic illness do that everyday. But what frustrates me now, is I "look fine"but I'm still having to work extra just to keep up. This part has not ended for me. Again another myth I had about remission busted. All of this buzzes inside of me everyday. I'm working with a new set of rules and I'm trying to figure them out.
Now I hear this a lot on facebook lyme groups is it recovery, remission, getting better, etc. I find the best way to explain this part of my life is remission. Recovery sounds like I am all done, perfectly fine, and nothing residual is left for me to deal with. Getting Better again sounds like its a journey but the word Better has always made me uncomfortable. I am not Better, I just am. I'm simply on a different part of the path. It has its own set of problems, pros and cons, positives. Remission isn't black and white. Its a messy mix. I still take 9 pills a night folks. I am not "done". We need different language and terminology for this part of the journey. There are no absolutes.
Emotionally one day I am feeling pretty darn good, walking, moving, working, participating in life, enjoying the moment, even dare I say confident at times. But when I am reminded of my chronic illness life I am snapped back to all the baggage that comes with it. Its hard to trust the good days even now. I am still waiting for the other shoe to fall as they say. So how on earth are we suppose to explain this to someone who has never been on this journey? I don't think we can. I do think when we listen to someone else's experience to be open minded. The most valued gift for any lyme patient is a pair of listening ears and a closed mouth. I know I sound blunt but its the truth. The people that I have valued along this journey just listened nothing more. We have to be careful not to impose how we think people should feel or respond to something they are experiencing.
Remission is simply a new stop along this journey. I am shocked I am close to 80% remission. I never thought I would get this far after being misdiagnosed 17 years and in treatment over 10 years. Sometimes an open door to possibility is a good thing. It nurtures hope.