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.
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.
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.
How do you live in a body which is constantly at war with itself? A mind constantly fighting against itself. How do you manage to stay in control when you know what is right but you cannot function to bring yourself to allow it to happen? After years of being told what you do isn’t correct, being second guessed at every decision you make, being brought down to feel like you aren’t functioning properly you lose control of your own mind. The voices in your head take over and their goal is to confuse you. When a Negative Nancy comes into your life and brings you down at every chance they can get, they bring along their friends to rearrange your thoughts and motivation. Anxiety Annie moves in and you are constantly looking over your shoulder wondering what will come next. Hateful Helga joins and she turns your heart to stone without you even realizing. You know it isn’t right and you fight against these terrible emotions but the years of comments and remarks have finally taken their toll. Your ability to go past it to bring out your Positive Polly, Calmness Caroline and Loving Lisa have been surpassed. You know you are not responsible for having Nancy, Annie and Helga so prevalent in your life. You have done everything in your power to deny them the right to be part of you. Slowly but surely after constant remarks relating to your abilities which are fine Sally Self Esteem has hidden herself away. She no longer wants to be in the forefront. She has been broken down and cannot deal. Each night you recharge her like you would your cell phone pushing Nancy, Annie and Helga down but as the day slips by and your mind plays it’s own games with you, Polly, Caroline and Lisa no longer feel they can exist. It’s a daily fight, a war not to be won without tragedy and pain. Your heart knows what is right and tries to outweigh the brain but somehow it never wins. So you take it day by day, recharging yourself over night. Doing whatever you can to bring your attributes to the forefront. You want to win the war. Just some days the battle fatigue runs into the next. Time is it on your side like the song or is it against you? Only time will tell.
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.