Lately, I have found myself getting angrier as time goes by; I get frustrated by the fact that I have an incurable disease. That I have to suction, lavage, nebulize daily several times a day so that I do not have a huge clog come up and then I have to save my own life in order for me to survive. I am angry about that too. Anger seems to be my word for right now. Deep down inside I am angry that I do not have an option so that I can have a healthy life and do the things I want to do, such as travel, such as have relationships. The option I am given is to endure even more pain, frustration, and torture in order for me live. Is it worth it? I am also afraid, deeply afraid of a lot of things. I am not like most people that scream and freak out over a spider or having to do something drastic to save one’s life. But I do have feelings, I do feel, I do have my emotions, I do have fears that manifest themselves and this woman needs comfort at times. How do I find that comfort? What comforts me?
The last couple of weeks I have been watching the old movie Independence Day. I have watched it several times. I love the story. I love the fact that they are fighting to stay alive. Even though the attempts they have done do not accomplish their ultimate goal, getting rid of the aliens who are trying to kill them, they are still working on a solution to insure they will survive and live. The relationships develop and grow full of love, respect, and honor for everyone. Is real life like that? Who would fight for me or with me so that I am not dead?
What I have found so far on this journey of mine is that very few run away completely, but some do run. Many people are afraid to ask me questions, to talk to me about my struggles or even about my disease. I am not the type of person that divulges information about myself without a bit of encouragement, because to be frank I find talking about my pain, negative monsters in my head, or the fact that I am struggling in many areas of my life tiring and quite depressing. I do have to say that I have a great team that is fighting with me, medical professionals, and that took me a long time to find. And I do know that my family loves me to pieces, but they too are frustrated and exhausted about my ever growing needs that seem to pop out of nowhere un-expectantly. They have families, responsibilities, and lives of their own they cannot be at my beck and call twenty four hours seven days a week. If I am tired, then it is easy for me to assume that they are just as tired as I am, just as frustrated, just as afraid. For they do watch me struggle, suffer, and came close to being dead a few times. Yes I am still in the healing aspect of having several dozen surgeries in the last couple of years, finding out exactly what it is I have, the many trips to Seattle, organizing and managing medical insurance, equipment, doctor appointments, and of course my finances have dwindled since this has all started too.
I asked a couple of questions about “What comforts me?” “Where do I find the comfort that I need at this exact moment in my life?” Here is my answer to those questions.
I find comfort in several things in my life that I have not had before, or didn’t realize I had until recently.
1) Relationships: this includes family and friends whom I can text, face book, email, or call to talk to me about things that are bothering me or even to let me know that I am not completely alone on this planet. I do have some hang ups, one it is difficult for me to communicate all the things that I go through, even though I have cultivated safe relationships with several family and friends. The thoughts that go through my mind is, I do not want to bother them with my petty difficulties or cause them anymore angst then what is necessary and two I do not want to bother them with me being overly needy. So I do not share my problems, rarely I do when it seems that my back is up against the wall. I am working on this aspect of myself. Having healthy relationships is being honest about what is going on in my life and sharing with people who are safe. I do not have the excuse that I do not have safe people in my life, because I do. Thankfully!
2) I have several movies that I can indulge in that uplift my spirit, such as I mentioned Independence Day! There are several others that I own that do the same thing. Indulging in stories of courage, strength, relationship, and victory always make me feel a whole lot better about my journey.
3) I have music. I love music. In fact, on my media player I have made a list of songs that uplift my spirit. I call it “Songs for a Bad Day”. I have a lot of songs on them and I put it on shuffle and let it play. The YouTube videos on this post are some of the songs that I have on my list that I listen to that make me get up and dance around and sing.
4) I wrote out my feelings in a journal and I also blog. I try not to have too many blog posts that are poor pitiful me posts that has be whining about how awful life is and oh I am in so much pain, oh poor pitiful me I am so lame posts. I like finding solutions to my issues. I like and use the tools that I learn from the two amazing therapists that I have been blessed with. And Monday I will be meeting another one to give me more tools to help me go further on my journey through Illness.
5) I pray. I pray. I pray. I pray a lot. I talk to God about the steps and ask for His guidance.
6) Of course my cat Nicholas gives me a lot of comfort when those dark doldrums hit. I love him a lot.
Here is my list, now I’d like to hear from you. What do you do to comfort yourself on a bad day?
Hi Jamie. I love your spirit and your strength in putting this out there. Thank you for sharing.