What do I value? How can I allow myself to be emotionally connected, present, and alive but also allow myself to be vulnerable, sad, and an emotional wreck or disaster? Is there a way that I can protect myself, kids, and family from heartache and additional pain while not distancing myself from the very people and relationships that I treasure?
Over the past couple of months I have been losing who I am. I’m not the me that I used to be, should be, or want to be. I love my family so very much but sometimes feel as if I am emotionally distancing myself. I don’t know why. They are the most important and meaningful part of my life. They are my world and I would do anything in my power to protect them. Maybe I just love them so much that I don’t want to hurt them or disappoint them. I don’t want to be the reason for their sadness. I hate seeing them hurt, especially if it’s because of something that I could prevent or control. At the same time, I know that this time of their life is so influential to how they will look at life as they get older. When they are older and reflect on their childhood - I want them to see and remember how much they were loved. I want them to be able to reminisce and cherish fun and happy memories. I don’t want them to see my illness or the limitations that have occurred as a result. I know that no childhood is absolutely perfect, I get that.
I just spend so much time and energy fighting my physical pain and fatigue, that I don’t have the strength to fight the emotional battles that come with it. I feel as if that’s wrong but at the same time I feel like it’s the only way that I can survive. At times, I feel so fragile, torn, weak from having difficulty getting by physically that I honestly don’t want to face the reality of how it’s impacting me emotionally. But at what cost?
I miss my life. I’m not talking about missing the “old” me necessarily. I think I have accepted my illness for the most part. I miss the spark that I used to have for life. I miss the laughter, genuine smiles, love, and relationships. I miss enjoying life with my family and creating memorable experiences. But I don’t know how to retrieve that part of me. All my available energy is exhausted with day to day survival. My “good” days are opportunities to build up a little reserve for the all too often “bad” symptom days, which are more common than not. I honestly want and need to rebuild and reconnect, truly reconnect not pretend to, for not only my personal sanity but for my kids as well. I just don’t know how. It’s so much easier to pretend than to be real. But definitely not as pleasurable.
I get it - you have to have thunderstorms to appreciate the rainbows, you have to have sadness to appreciate true happiness - but the big “what if” (I try so hard to avoid “what if’s”), but this what if can’t be hidden. What if I can’t handle my emotions? What if I destroy myself or my “image” in the process? Am I willing to chance that? In my heart, I know that it is more than worthwhile - but my mind apparently doesn’t always agree. I fear that if I do allow myself to be vulnerable, I will push away the ones that I love or create unnecessary sadness in my family. I do fear that my mind will be flooded with negative and scary thoughts, which for the most part I feel as though I could handle. But what if the thoughts overwhelm me to the point that I don’t think rationally? I would like to believe that would not be the case, but what if they burden me on a really poor physical day when I’m at my weakest? How can I prevent that? Will I be able to sidetrack them?
My current goal is to test my boundaries. However, that is so much easier to say than do. I will continue to force myself to watch movies, participate in family activities, in hopes of rediscovering myself and “living” in instead of just “being” in the moment. I hate to say the word “force” because deep down I do want to do these things, but it’s so much easier and less daunting to just be there sometimes, not investing myself totally, or avoid completely.
I just feel like I’m always walking on eggshells trying to decide either how much I’m willing to share about how I’m feeling or if I should even bother to share my thoughts/feelings for that day. I don’t want others to see me as a “downer” and I don’t want to be responsible for always ruining their positive moods. I don’t want them to feel guilty about the positive experiences or moments in their lives. I don’t want them to feel as if they have to “downplay” special events or moments because they know I’m not feeling my best. They deserve to be happy and joyful and it’s not my right to deny them of the opportunities to share and bask in their joys. Sometimes, the only way that I can ensure that I’m not the one bringing others down is to pretend to be ok. I admit that this isn’t always the case. On days when I feel decent, I actually can find joy and be genuine, just wish these days were more often and more of the norm instead of an exception. (Hopefully, surgery will help me have these treasured days more often.) On days when I feel my absolute worst, my family can tell because I don’t have the strength or energy to pretend or hide. I do try to open up to them, just more hesitant sometimes. But there are so many other days when I feel horrible and distance myself because I don’t want to disappoint them again. I hate having them see me like this. I know they love me just as much as I love them, but I don’t want them to worry about me all the time.
This illness has changed me so much, both in some positive and negative ways. On a positive note, I cherish or treasure simple moments much more. I’ve learned to put in perspective what is most important to me. I’ve always had a great relationship with God, but I feel as if the relationship has strengthened even more. On the negative side, I feel awful the majority of the time (with decent/good moments sprinkled in), I’ve become a pretty decent actress, I’ve just misplaced my zest for life. Sometimes I am either too patient, to the point of not caring, while other times I’m not patient enough causing the smallest things to irritate the crap out of me. Thankfully it’s not all the time, usually during “bad” times, but why is this? I want to be involved in conversations. I want them to enjoy life and have fun, as do I. Is it simply because those are times when I’m feeling at my worse physically and all my focus is on surviving the moment? Is it because during these times I’d rather close myself off than accept what I’m feeling? Is there just too much going on that I’m overwhelmed? I personally believe that sometimes it's just from pure exhaustion, but I don't know.
What I do know, is that I’m NOT always the strong person that everyone else sees in me. I try to be, but I’m not. I truly believe that others, especially my family and friends, greatly overestimate my strength. I try to live up to their thoughts and perceptions, but the more I try the less I agree. If I possessed this strength that they think they see in my, then why do I have to try so hard not to give up on myself? True, I do have some strength, God entrusts me with it, and I do feel at peace and do feel comforted and supportive the majority of the time. But I’m not strong enough all the time. And that’s okay. God’s ok with me not being strong enough, that’s when he can carry me. I’m sure that my family would be alright with me showing my weaknesses and vulnerabilities at times. They are aware that it’s impossible to meet all expectations all of them time. So why is it so hard for me to just let it be, go with the flow naturally, instead of pretending to calmly roll with the tide? What am I so afraid of?