The process of creating music has evolved over time and so has the way we deal with treating and living with an illness. We've developed more words, fine tuned a melody, and stacks of Marshall amps that go to the heavens; the urge to express ourselves in a song remains as strong as ever. Just as in the medical 'chronically ill' world, we have developed more words for medical terminology and new disease processes, more fine tuned medical devices and testing, and stacks of medical records that, if laid out, could be a mile long; the urge to express ourselves, our chronically ill selves, has remained strong just like a great country song tells a emotional story or a screaming heavy metal song has lyrics of pain.
We escape into a world all our own and this is what we have in common with music. Music allows everyone to escape into the world of the one writing the lyrics, wether they are healthy or in the deep stages of an illness. There's been studies that have shown music can reduce pain. Please, if you haven't tried music therapy, I implore you to just give it some time in your life. Music can help to ease pain. It can help us express ourselves. I'm not a musically inclined person. I can't sing a lick but I will still belt out the lyrics to my favorite Adele songs or sing the whole album of Pink Floyd's greatest hits on repeat. I love music and how the artist express themselves. It's life in tune. It's life in a wonderful melody that really can help to get my mind off my pain. However, there are many songs that make me cry. I mean big ole' ugly crocodile tears. One song that comes to mind right now is 'Her Diamonds' by Rob Thomas. He wrote that song about his wife whom he loves so deeply and she suffers from a chronic illness. It reminds me of how much my husband wants me to feel better, to have less pain. I'm very lucky to have a man like that in my life. I have so many days of severe moodiness because of pain, frustration and despair but he stays by me, for better or for worse. He is my hero. My strength and my world. I have Chiari Malformation, Idiopathic Intracranial Hypertension and Fibromyalgia and I live in pain daily. I would give anything to have my wild, carefree and painfree days back but these are the cards I have been dealt and I need to learn to write my own lyrics to live in this world of chronic pain. A melody of pain, life, living, of being strong and not giving up. Music helps me get through some of my bad days. It gives me strength and hope. I spend a lot of time in a hot bubble bath with my iPhone and Bluetooth speaker listening to my eclectic selection of music on shuffle. Many tears are shed during those bubble baths. It's my personal time to cry and let go emotionally. It's my time to truly listen to the lyrics and the meaning of a song. We all have a song and a plan in us and our lyrics are different; though some may be similar. My plans and song might not include your lyrics. I pray we all find our music to let our souls dance and sing to escape even the tiniest bit of pain or sorrow that comes with living in a chronically ill life. So, put on a pair of headphones and escape into the world of the amazing lyrics. After all, we are chronically fabulous living in this melody of a chronically fabulous life.
0 Comments
We all experience aches and pains from time to time, especially as we get a little bit older. But I never imagined that pain would take hold of my life the way it has.
In August of 2015, I was 'officially' diagnosed with Chiari and in October I was diagnosed with Fibromyalgia. I've been in so much pain over the past 2 decades and it causes so much sadness. I had to stop working in the medical field in July of 2015. The pain became too much for me to bear. I was prescribed pain medications, but they didn’t really help. Each time I returned to my doctor, the answer was always the same — let’s try another medication, let's run more tests. Gradually, I began to disappear into a world dominated by my constant struggle with, and focus on, the pain. Everything else in my world began to fall by the wayside, and the things I loved to do — the things that gave my life joy and meaning — no longer seemed possible. I loved to cook, socialize with my friends, and go camping. Previously, my days were busy working at the hospital, going out listening to local bands play, taking my grandson to the park, going out kayaking and dancing. But my world soon shrank dramatically when I started to cut back on hours at work and then eventually stopped working. My world shrank even more as I spent all of my time at home, usually on the couch watching television, depressed by what my life had become and in agonizing pain. Eventually, I began losing hope with a melancholy state of mind. I have isolated myself, yet although I don't often realize it, I am far from alone. I have a plethora of fellow chronic pain friends. I call them my Chronically Fabulous friends. My fellow suffers have these same thoughts and feelings. We each, have to learn our own ways of coping and figuring out how to live our best life. I know I have to accept that it isn’t ever going to go away completely. Pain medications are certainly not going to make it go away but they help. There is no cure for Chiari or Fibromyalgia. Treatment for the symptoms, the long list of symptoms, is the only option right now. I've come to terms with it. Tears are flowing as I'm sitting here on the couch in my pajamas. I've been in some sort of pj's for days now. Heck, probably since just before New Years. I only got dressed to go to my CT scan yesterday then I was back in my favorite outfit, my pajamas. My legs are hurting so bad. My CT scan to see why I'm having such horrible pain in my right groin. Today my left knee pain is getting worse and now my right hip is starting to hurt. I can't walk without pain which makes walking difficult. I'm crying tonight because I'm afraid I'll end up in a wheelchair. I'm looking around my house and thinking about the furniture that I'll have to move around or get rid of. I thought I might need a walker or a cane but my wrists hurt so bad I don't think I could bare any weight on them so the road to being in a wheelchair is seeming more likely. I always thought 'MELANCHOLY' was such a beautiful word even though it's meaning is the opposite. Melancholy is beyond sad, it's a word for the gloomiest of spirits. And yet the very melancholy that afflicts someone can also be the impetus for a creative restlessness that can spark greatness, calm a soul and be the journey to let us realize what is important in life. I was watching tv the other night and someone said 'I will not let my pain control me!' When I heard that I told my husband that it will be my new motto. Pain has greatly changed my life and it has brought feelings of melancholy but I have decided it will not control me. Finding new ways to do the things I love and enjoy is on my list of things to do in this new year even if it means I'll need extra assistance. I will just be moving slower and more cautiously. I can do anything I put my mind to. After all, I am chronically fabulous and I'm living a chronically fabulous life. It's 2 am and I'm sitting here with a horrible headache along with the nausea that usually accompanies it. I haven't written here lately. I was trying to forget about my illness for a while. Ha, I guess my illness didn't want to be forgotten because I have been feeling pretty bad. The pain is unforgettable, relentless and unforgiving. Living with Chiari Malformation is a life full of pain.
My life, as I know it, isn't as beautiful as I thought it would be. It isn't as painfree as I dreamed. My life isn't as extraordinary as I had planned. Well, maybe it is beautiful and extraordinary. I just have to look at it in a different way. First I have to realize what my life means to me and others. I'm tired. So very tired. Some days I think to myself, 'I can't go on. How much more can my body handle?' I feel sorry for myself and I hate that. I used to be so proud of myself and my accomplishments. Most people came to me for answers or help with something. Heck, I was so happy to be the one people looked to. Now, I'm the one needing answers and help. Every morning, when I wake up from a restless sleep, I pray this has all been a nightmare; A nightmare that I continue to live out everyday day. I pray that tomorrow my pain will be less and eventually I will no longer have this chronic illness. Every morning I wake up to face a tremendous daily fight, a chronic fight, a sad and sometimes hopeless fight. After all these years, I know this is not a bad dream, it truly is a nightmare. I live in it and I am the star. I was chosen as the main character without my consent. I think I should get a Golden Globe. It's a hard part to play. Heck, I wish I had a stunt double for the really bad days but I don't have one. I have to do my own stunts even if it means I'll end up in the ER. Today I order my first Chiari t-shirt. I don't really have anything that brings awareness to my fight. I have jewelry but nothing that stands out for people to actually notice. This blog was started so that I could tell you my story and spread awareness about an illness that doesn't have enough research or publicity about it. I cried a lot today. I cried because I'm scared. Being scared comes with the territory of having a chronic illness. I'm scared because I don't want to be a burden. I'm scared because I can't see all the beauty in this life anymore. I'm scared because I don't want others to think my life isn't extraordinary. I'm scared because I'm so tired and I don't want to give up. I'm scared because I'm not sure how much pain I'll be in tomorrow. Maybe I'll have a good day, a day of tolerable pain or maybe it will be so bad I'll end up in the ER. I'm scared because going to the ER means I'll be made to feel like I'm a liar or exaggerating or treated like a drug addict. It's sad the way the medical personnel treat someone with an invisible illness that they have never heard of. Most people think if you aren't bleeding or don't have physical findings that show you are in pain, then you're a liar, an exaggerating fool or just seeking drugs. That scares me and that's why I try to avoid going to the ER. I'm scared because I feel sorry for my husband who has to work so hard and who does anything to keep me happy. He would do anything to take my pain away. I'm scared because I started to think of the future and what would happen if my husband passes before me. I don't want to be a burden on my children or anyone. I just hope the Lord calls me home before that happens. I'm scared because I'm afraid I won't wake up one day and my husband will have to plan a funeral. I have felt so sad lately. I remember when I was this energetic mother, hard worker, ambitious, fun to be around, and fearless woman with a plethora of friends. When you become chronically ill and live in pain daily, you lose that. I'm sad because I have to figure out how to find a new meaning to my life. I'm sad because I don't have all the answers for it. At least not yet. I used to be the one with the answers. Living with pain is only a part of what happens to a body when a chronic disease strikes. There are always side effects of a chronic disease. I have my share. Headaches, body aches like I have the flu, stomach problems every day, foot and leg problems, vision changes, nausea so bad I lay in bed and don’t dare move, dizziness, nerve and muscle pain that strikes anywhere in my body, severely itchy skin so bad that I scratch until I bleed, difficulty concentrating, memory problems, restless leg syndrome, and more. In fact, I never feel good anymore, ever. I feel sick everyday as I live with pain and its side effects throughout my broken body. I've been doing a lot of thinking over the past couple of weeks. What if I die soon? What if my body gives up on me? Should I get the house in order just in case? These are thoughts that go through the mind of someone who is chronically ill. Crazy thoughts, I know! But I have them. I'm tired of crazy thoughts! I wish I had more of the 'fun' crazy thoughts I used to have and less of the 'sad, scary' crazy thoughts I now have. So, what is beautiful and extraordinary about my life? These are the things I know to be true, so very true and beautiful and extraordinary: *my very supportive husband whom I wouldn't know what to do without. *my amazing parents who have helped me in so many ways especially since I can't work anymore *my beautiful daughter who has the biggest heart of anyone I know *my son who is wiser beyond his years and who has no fear *my grandson who fills my heart with joy *my Chronically Fabulous friends who understand my journey *my 'healthy' friends, though only a few, who continue to be by my side and finally, my pain because it tells me that I'm still alive so I can continue to enjoy my beautiful, extraordinary, chronically fabulous life. Everyday I will try to take time and look for more beautiful and extraordinary meanings in this chronically fabulous life. Life goes on whether we are in pain or not. |