The struggle, however, is that after so many unsuccessful treatments, doctors appointments, and surgeries, you can get to a place where you begin to question yourself. I know without a doubt the level of pain I have to live with on a daily basis. I have no doubts that each of my illnesses is very real and not some type of manifestation of mental distress. I have no doubts that I know my body and know that something is not right.
The struggle comes as a result of the mental exhaustion that comes as a result of living with chronic pain such as endometriosis. There is most definitely physical exhaustion from battling illness but the mental exhaustion is hard to describe and is not as recognized by those on the outside.
I am constantly worrying about when the next surgery will come. I stress about how my illness is affecting my family. I cry knowing that my daughter now recognizes when I am in pain and that she worries that her mommy will never get better. I fear what my future holds as if my pain is this intense now, what will it be like in ten years? How will I be able to handle it?
I feel like there is a constant weight on my shoulders and it can be exhausting. Mentally exhausting.
This is where I come to a mental and spiritual crossroad.
I know in my heart of hearts that God is in control and He has plans and hope and a future for me. I know He is going to take care of me. I may not know all the answers but I can hold tight to His promise.
But at times it is so hard to turn off that part of my brain that is programmed to worry. It is such a struggle as I know the more I worry, the more exhausted I become which causes me to worry even more and thus perpetuates the cycle. I am such a type-a personality and like having a plan and like being in control even more but one thing you have to come to terms with when living with endometriosis and other chronic illnesses is that are not in control. Flares will happen and there is nothing that you can to do to prevent it. By trying to constantly maintain that control, you can really wear yourself down physically, mentally, and physically.
I know all of these things but it is still so hard. Every day is a battle and every day I pray that I can turn over the worry and the stress and allow myself to rest in His promise which is more than enough to get me through.
What is the hardest thing for you mentally or physically when living with chronic illness?
I believe you just wrote what I was feeling yesterday. OK, I feel it from time to time, if not a little too often. My husband was talking about the “it’s in your head” thought that really does cross his mind and others when looking at someone like me or with an invisible illness. And that if he didn’t know my pain was real, he would have a tendency to think that of others. I might as well, without the knowledge. Because it is almost unreal to look fine, and not be fine. And then we talked about the fact that some of it is in my head. Not to that my illnesses are psychological, but that they cause psychological distress and are mentally exhausting. Not just the pain, but the worry, the guilt. The sheer toll of being in survival mode a little too often.
There are 3 hardest things:
1) Knowing how often I let others down even though it is not my fault
2) Not having the energy to raise children, even adoptive
3) Being tied to being near a bathroom and all the restrictions that ensue from this lack of freedom (yes, I do drive distances and fly, but it is SO STRESSFUL)
I really had to talk myself into publishing this post so I am glad that you were able to relate! It is so hard! I can definitely relate to needing to go into survival mode! I hate it but I have found myself there quite frequently as of late!
Well said friend. It’s so hard. I went out to the races this weekend and a friend said “I didn’t know you were feeling better”. It was frustrating. I replied “I’m not, but trying to take care of myself mentally too”. Because I knew I needed to have some fun and get out and do something.
I paid for it Sunday, spending the whole day in bed from pain and exhaustion. But at least I had a little bit of fun!
It’s a constant cycle of mental aspects…pushing through so you don’t feel the mental aspect of letting someone down, but then dealing with the physical aspect later for pushing yourself which then leads to another mental aspect of deal with punishing pain! Aghhhhhhh.
Great post. I need to write mine. 🙂
Isn’t awful to have to pay so dearly for a day (or even a few hours) of fun time? Whenever we travel for vacation, I always feel like I need a second vacation in order to recover from the vacation itself! Learning to budget my time and energy is something that even after all this time I haven’t quite gotten a good handle on!
I think you hit the self-doubt nail on the head there. I always end up questioning myself, and worrying. Thanks for talking about it 🙂
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