Celebration – – – – this weekend I celebrated being able to spend time with my family and friends. Having a child live out of state and not being able to see them often makes every minute of time that you get to spend with them a celebration. Being able to add their other sibling to the mixture, as well, as their godparents and spouses was a fantastic time. You don’t have to have a huge party with presents to have a celebration. You can just bring together family and friends and spend time with them and let the celebration happen.
Although it’s been a long time since I posted anything in my blog, nothing really has changed. My migraines have been the same, if not worse. I have gone through series of Botox to no luck only money out of my pocket and my level of disgust with this disease has only grown stronger. The amount of life it has stolen from me is indescribable and although I should be grateful for what I have and who I am even with this disease and yes I consider it a disease, I can not yearn for what I was or who I could have been if it wasn’t in my life.
For example, Friday night we had huge rains which sucked the life out of me and put my body to bed at 6:30 pm due to pain and exhaustion. Today they are calling for storms overnight and even though I feel like I am just recovering from them, I can hardly move and have been pushing myself all day in order to accomplish normal household chores which are done but not as well as they could be. To feel strong and healthy with energy and be able to clean my house from top to bottom like I used to would be a dream come true. Instead I dust, then sit down to rest for a while. Then I get up and vacuum and then sit down to rest for a while. It takes twice as long to accomplish anything and performing the act itself is in the easiest form knowing the energy is being zapped out of me with every movement.
So as I try to be as normal as possible, keep my chip up and a smile on my face, my heart can’t help but sink internally as my mind really deals with all that is going on around me.
Funny thing how your life changes in an instant and then proceeds to change slowly but sometimes quickly over the years as you adjust to your chronic invisible illness. You learn what your triggers are, how to deal with them, how to avoid them, along with all the changes your body goes through. You also deal with medical advice along the way including changing medications, changing dosage as your body adjusts and adapts. You feel like you are constantly reinventing yourself without knowing who you are, feeling down most of the time because basically you are feeling ill and exhausted but amazingly you look fine.
Then along comes a combination of things making you feel better. You have lower pain levels on a daily basis and actually are sleeping better giving your more energy. You at first don’t want to admit it but you think you feel more like what you used to be but you aren’t even sure anymore who that person was. Now you are totally confused. You have energy and you want to do things but you are afraid. You are afraid you are going to relapse at any give moment but yet you want to enjoy each low pain level moment you can.
Now you really don’t know who you are or what to do with yourself and the struggle is real. Once again, no one can see it or feel it but you. They know you feel better and don’t understand why you just can’t be who you were. But you really don’t remember who that person was anymore and can’t go back to her. You are tried of these ongoing challenges and instead of enjoying this new found freedom stay away from socializing and the depression is worse than when you felt sick with high levels of pain. At least your body understood why you tucked yourself away in solitude then but now when feeling better your mind struggles to understand your choices. Who are you is an ongoing tiring question. The struggle is real and now your pain isn’t physical, it’s emotional. When will it all just end?
I am broken and I would love to be fixed but I shall remain broken and in a way I am a work in progress for a fixed broken life. No one can fix me but myself although for years I felt others were responsible for fixing me. I am a work in progress and will always be, as we all are, for no one of us is perfect or has the perfect life no matter what they put on paper, social media or show the outside world. We all have our struggles, our insecurities and our goals we want to achieve. The key is realizing they are there. Accepting them as only challenges and instead of thinking we can overcome and accomplish everything at once, taking life one day at a time, sometimes one hour at a time and even one moment at a time. When we can accept this in our hearts and start to live our lives choosing one goal, one challenge, one progress and working on this daily until we are content and then moving onto the next, we can fix our own brokenness. When living with a chronic invisible illness there will be things we can never fix, but we can work on ourselves to make it as comfortable for us as we need. The key word is work and sometimes when we are so down, we don’t like the word work. Maybe sometimes we take a break from all the work and drift for awhile but we need to remember we need to continue to challenge ourselves if we want to grow. For life doesn’t stand still and neither should we. Do you agree?
After spending one week totally out of it ending in the ER with three different migraine cocktails and being told that was it, I decided it was time to try everything and reduce all I can in my life. That week taught me a lot about myself and even though I think I’m strong sometimes I’m just bullheaded. My daughter suggested we get a daith piercing together and even if it didn’t work it would look cool. We bit the bullet and she got immediate relief. I felt a draining and the pain lessened and without triggers has stayed pretty low level. I didn’t realize how numb I was on the right side since I felt nothing from the piercing. Even now only if I lay on that side with my ear pinched in a certain way is when I feel it. It’s hard to see but the ends of the piercing are purple gems for migraine awareness. My next conquering will be stress relief which comes from so many things. But I am determined I need a new life. How is everybody else doing???
Can you exist in darkness? Do you always realize the changes your life has taken? Does it take something to make you look back on in order to see what you have become? I realize I now exist in darkness. I have conveniently dulled all my senses. The sense of Touch I dulled by removing myself from social society. I stay home alone rather than venturing out amongst my friends. The sense of smell has been dulled due to the inability to be around certain smells since they trigger migraines. My sense of hearing has also been dulled by the fact loud noise also triggers migraines. The sense of sight has been dulled down to darkness for as much as I love sunshine, the brightness sears directly through my eyes and into my head causing great pain. Last but not least my sense of taste has been dulled by the foods that are migraine triggers. These things have evolved over the years and still change as new triggers are found. I realize though the sense of touch bothers me the most as I have chosen the path to exist in a dark lonely place versus human contact. Human contact itself isn’t a migraine trigger but the brain fog and the inability to complete sentences at times as I strive to find the word or words I need to bring it all together is an embarrassment in my mind when trying to communicate. I struggle to find the words I need to express myself as I write this and I realize how much this effects my life. I read, re read and edit this trying to make it readable yet the words flow together at times and I sadly realize this is my life. For this I have no choice and this is why I resort to darkness and being alone. There is no fear there. There is no judgement. It is just myself and my thoughts, although they can be brutal at times. But this is my life and it is how I have to exist. Thank you chronic migraines.
It’s June again and it’s Migraine Awareness Month. There is so much to be discovered yet about migraines. What I write is what has happened to me and what I do to cope or not cope. Of course, being Awareness Month my body is making sure that I am aware I have a migraine. This year will be 13 years of this chronic invisible illness destroying my life. I can say destroying because my life has forever changed with this disease. I can never be the same again. I can try but I will fail and I will only become disgusted along the way. I still have not accepted this. I still try, I still fail and I still become disgusted. Let’s step back 3 hours ago. We recently had carpet installed in my daughter’s old bedroom. As a result, everything had to come out, go into another bedroom awaiting the installation. Today, I decided I was going to put things back. The old me would have started at one end of the room and not stopped until everything was put away. The new me had to stop only 1/4 of the way into the project because I am exhausted, my body is exhausted, my head is pounding and I feel like I just can’t move. I can’t accept this. The emotional toll of this disease is much more than one can handle. Constant pain in your head, constant anxiety about the pain, not being able to sleep properly and now this immediate fatigue when trying to accomplish something. There is no cure so for me there is no hope. I can put a bandaid on it by taking abortive medications which place the beast on hold for a short time only knowing it will come back. So June isn’t the only month I am aware of Migraines. January through December I am aware. January through December I try, I fail, I become disgusted and I go through this cycle, day after day, week after week, month after month and now year after year. There is no cure.
What are appearances and what do they do for us? Do we always make decisions about someone immediately on their appearance? What if we just talked with someone first without seeing them, would we have a different opinion? Would that discussion still reveal the person under the skin?
Many of us are quick to judge someone just by how they look. We see them smiling and immediately think they are happy, we seem them crying and think they are sad or we see their hair, body type, clothing and judge who we feel they are. Many times we are wrong. A smile can hide so many emotions. Many learn how to smile so they don’t have to explain themselves. Sometimes when we are crying, we are crying tears of joy and not sadness. Sometimes we love a crazy hair cut, hair dye, clothing or maybe our medical condition has us overweight and we are judged because of this. Even just talking with someone without seeing them, they could sound happy, put together when really inside they are dealing with issues that might have your head swimming.
So appearances really don’t mean much. The most put together person who one might consider beautiful, appears to be intelligent might be hiding deep emotional issues that no one ever will know. Or the person who looks homeless to you might be wealthy, intelligent and appearance means nothing to them. But yet we will judge all those who walk by us. It’s our nature.
Why do appearances mean so much to me? Because my appearance for years has hidden pain, emotional turmoil and learning how to deal with a chronic invisible illness I look beyond what what an appearance is. I look beyond what words people are saying to me. I know what all can be hidden inside. What a soul can deal with that no one else will be able to fathom. What do appearances mean to you?
What are emotions? An emotion as described by the Merriam-Webster Dictionary is a conscious mental reaction (such as anger or fear) subjectively experienced as strong feeling usually directed toward a specific object and typically accompanied by physiological and behavioral changes in the body. My body has undergone so many emotions in its lifetime so far. With the onset of chronic migraine the emotional roller coaster has taken a major toll. It has come to the point of withdrawal from society. Dealing with pain every day and never knowing from moment to moment the level it is easier to stow myself away to let the waves of life flow over me. At times I am okay with this and these are the times of extreme pain. Other times it is difficult to think this is my lifestyle when pain is low and I wish to participate but fear overcomes me. How and why have I left this control me rather than me controlling it. Pain isn’t easy. It doesn’t take orders from medications or lifestyle changes to make it better. It has triggers which I cannot control. Mother Nature ebbs and flows and as she changes the changes trigger my pain. To say goodbye to all of this would be a dream come true but alas there is no miracle cure. So I wake up and go to bed each day never knowing what it will bring. I push myself to move forward but wish to climb inward. Emotions and life. Easy for some yet so difficult for others but is it always our fault?
Last night was date night with my husband. We went to the movies, something we haven’t done in years. Something we used to do frequently in the beginning of our relationship before children and a chronic invisible illness. But who can resist Beauty and the Beast? A classic movie which was the first movie we took our oldest daughter to see in an actual movie theater after watching many videos at home and after it was over she wanted them to rewind it and we will watch it again. Last night though I saw the movie through different eyes and not so much while I was watching it but while I couldn’t sleep afterwards. I started to relate my life to the movie. The Beast was my invisible illness robbing me of life, placing high castle walls around me, alienating me from society slowly but surely locking me away in a real life home which could have easily been that castle tower. Even though I live this on a daily basis and it has been my lifestyle, how painful it was to relive the realization. To be out amongst society at the movie theater thinking how easy it is for everyone else to go but really how painful it was for me to be there and to keep that pain all inside because I didn’t want to ruin the date night for my husband. Painful not only emotionally but physically. Large screens are wonderful for seeing but the images are too overwhelming for my eyes and burned right to the back of my brain. The boom of the sound system still echoes in my ear as it rings away this morning. Things to me “normal people” don’t even think twice about going to the movies. Things that put me in the castle tower, alienating me away from society but unfortunately by my choice and my illness. I cried while tossing and turning overnight. I cried for a life I will never be able to have again. I can be loved and create a new life. This is something I have also be denying myself. Love for myself as I am not as I just want to be. What difficult lessons to be learned. What challenges lie ahead. I need to see outside my walls no matter how difficult.
What is life? Is life what happens to you each day or what you make happen each day? Do you have control over this? Is life what you want to happen or what you dream could happen? Life starts with each second, each minute, each day, each week, each month, each year adding up. What happens during that time really is up to you. Do you have control over this? Most would state yes but some of us would say no. We are the ones who live with illnesses many others cannot see that control our lives or maybe this is what we feel at times. We try to control these illnesses and have a life, make things happen but it doesn’t always go to plan. This makes us feel we have no control and the circle ends with us feeling we have no life. Is this only a mind game this thing called life? Because each of us has different expectations of what life should be. Some are happy with a laid back lifestyle, some search for wild adventure, some are in between. Is there a real definition for life? Do we take it too seriously? Do we search for too much setting our expectations too high and then disappointing ourselves? Take a few minutes and think about it. Make life what is perfect for you, no comparisons to others, maybe no major expectations. Take time to smile and be happy for just being you for each one of us is special and important.