It’s so nice when your body allows you to fall asleep after a toss and turn session. Yet rather disturbing two hours later when pain jolts you awake and the night sweats take over. This is when you lay quietly questioning your life and start your night time prayer. You pray for the sweating to stop. You pray for the pain to subside and you pray for sleep. When none of this happens, you pray for it all to end.
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?
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.
How do you break the train of thought? How do you avert your attention and force yourself to think otherwise? You try, damn it you try. Day after day you try. You trick yourself or so you think. Your mind just circles around and brings you back full force into what you want to ignore, what you want to give up, what you want to push way back into your brain. You think okay, I’m just going to face those thoughts. I am going to think them and think them away. They don’t mean anything to me anymore and they can’t hurt me. You are strong, you are forceful and you push those thoughts away once you have dealt with them. You feel good but the train comes back. It slams you with it’s freight, causing you to give it attention. You so want to derail it. You want a new track, a fresh start and you push again. You push for that start. You think this time, this time I derailed those thoughts, I brought them to a halt and left them at the station moving forward to look at new things. You will not give up.
At work I write a weekly email of tidbits to share. I started composing my own quotes and putting with them an image on Text2Pic to help get my points across. This week my email started out by talking about attitude, your attitude and how you face things. This year already has been eventful for me. Besides my husband having a major surgery which has changed our lifestyle greatly, over a week ago I was diagnosed with shingles. I couldn’t believe this was happening to me on top of everything that was going on, yet I could believe this was probably the perfect time. I wrote this quote because of the attitude taken since my diagnosis. Dealing with chronic migraines I have taught myself to deal with pain, to face it head on and not let it take you down. I have been handling the shingle pain in the same way. I was able to take the antiviral medication prescribed but the pain medication they were willing to give me was medication which only provoked my migraines. So I went without and am taking each day as it comes. My outbreak was on my rib cage, therefore, my pain feels like someone is punching me from the inside out while twisting my ribs making them tingle with pins and needles feeling along with the pain. It is pretty much constant with the intensity level rising and falling. Starting just the last few days it has now twisted around to my back. Sitting is uncomfortable, laying is uncomfortable, walking, breathing, anything is uncomfortable. My brain thought at first it would be impossible to have the two types of pain at once. Either my migraine pain or shingle pain would rule. But no it isn’t the case, they both peacefully reside causing their pain at the same time in the same body. I wasn’t going to let this get me down and didn’t miss any work just falling into bed exhausted at night only to lay there not being able to sleep, only in short spurts. The doctor was hoping it was caught very early and won’t last as long as a normal case. I can only hope the same but sitting here typing this I am not so sure. I try to occupy myself to take my mind off the pain but it becomes difficult throughout the day. Last evening we finally had plans which were made months ago to go out and even though both of us weren’t sure how it was going to go, we went. My husband glad to finally get out of the house since his surgery and me just wanting him to be happy. I tried to numb my pain with a few beers but even though it worked for a few hours, it didn’t take it away completely. It did give me the knowledge alcohol is not a pain killer, your pain physical or emotional will still be there when you are done drinking and if you drink too much, you will have more pain than before. So this weeks life lesson is your attitude as to how you face your problems or life situations totally rule the outcome. I could have stayed home in bed for the week or I could have done what I did, went on with life and made the best of a bad situation with a positive mind.
Did you ever just think about finding yourself? Do you really want to find yourself or are you hiding from yourself? I find myself hiding from myself more and more. The longer and deeper I go into this “invisible illness” I find I no longer want to be myself, be with myself, around myself and I shut down turning quiet and inward. It really isn’t a good thing and psychologically I understand it but yet here I go. I tell myself who wants to be around such a broken person, how can I communicate when I struggle over little words at times when they just fly out of my head. I am so tired of hearing you create your own happiness. You create your own life but circumstances at time dictate it. Maybe I am just in a tired of fighting stage. People don’t understand how exhausting it is just trying to be at times. How hard you fight to drag yourself out of bed to try to have a life when all you want to do is lay your painful body still and quiet. But you push, push, push and they don’t even know. You do for others so you forget about yourself. Find yourself – what a concept when all you want to do is hide.
migraine musings 