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.
A migraine giveth and it taketh away. It giveth you pain beyond your wildest dreams and taketh away your life leaving you no dreams.
A recent new medication of Aimovig started with a first injection July 24th changed my life. It initially changed my life by giving me a peak back at it. The first month I had approximately three weeks of relief crashing back when it came to the weekend before my next injection. The second month gave me almost a full month of relief but then come September I received no relief, seemed like even more pain. What I have come to realize is that I am back to square one of learning how to deal with migraines. It amazing how fast you can forget but when you have the pain day in and day, it gets to be part of your daily life and you cope, overcome, give up, do whatever daily because it is the same. But when you actually get to experience days with low pain levels down to a 1-2 which as a pain survivor feels almost normal, when they come rushing back and controlling your every move, you have to adjust yourself back to your “unnormal” life. The Chronic Illness life. The one without not knowing what will come next and just tempering yourself to know what pain level you will be dealing with. So before October injection I requested my dosage to be increased by my Doctor who had freely informed me not to give up if it doesn’t work when I first try it and there is always an increased dosage to try.
Well, unfortunately, double the dosage has done nothing for me yet at this point and I’m almost two weeks into this new injection. I don’t want to give up so easily but the little bit of life I was given, the glimpse of what it is like to be “normal” is now so hard to get out of my head. I yearn so much to be that person again. I know it exists but yet my body keeps it away from me. Instead, I crawl back into the dark of the chronic world I don’t want to live in.
So migraine giveth and it taketh away. Not that we want it to.
To most the dark is when the sun goes down, the light of day fades away, the stars and moon come out and the dark over takes the earth. I view the dark in a totally different way. To me the dark is when the pain takes over and my body is incapable of doing anything but laying down, moving only from bed to couch. There is no urge to want to eat, drink or move. The pain just rolls from one side of my head to the other and as I move the vertigo just takes over. With all of this nausea moves in with my stomach as every part of my body tries to get in on this so called party. Next moves in anxiety as you feel anxious about every move you want to make and how it going to effect each portion of your body. Then depression joins in as you just want to crawl into a dark hole and let your pain take over every inch. This dark is hard to fight as the pain is so convincing in keeping you down. You feel no want to interact with life and this only makes it worse. But the fight is difficult when all your systems are down and out. But you have to do it, you have to move no matter the pain, you have to trick your brain to think about something else. You have to, you just have to or the dark will take over.
Today is your 99th Birthday. Your wish was to live to 100 and you lived to 98. My heart is full. Full of love, great memories of a Mother who gave unconditional love along side of sadness of a daughter who will no longer experience it. This is my year of firsts. The first Thanksgiving without you, the first Christmas without you, the first New Year without you, the first Mother’s Day without you and the first birthday without you. Up until Mother’s Day I was in denial. I blocked my brain thinking I was a bad daughter just not visiting you at the Nursing Home even though in reality I knew you were gone, hell, I attended your funeral. It was my way of coping. Now I am angry. Angry I am alone. You and Dad are gone and I have no parental support. It doesn’t matter how old you are, you still want your Mom or Dad to be able to give you advice. I know I have to experience all of this. It’s the way of grief. You both taught me all the aspects of life and now you are teaching me the hardest one as I act like a toddler kicking and screaming all the way. The adult in me in numb and I know I will never be the same.
So Happy Birthday Mom, have a wonderful heavenly celebration with all the loved ones who have gone before you. Those you haven’t been able to celebrate with in years and you mourned for, the same as I mourn for you. We will meet again. My love will never leave my heart. The year of firsts will be filled with denial, anger, numbness and eventually acceptance. But love will never be taken from me.
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.
When you don’t know where to turn because your emotions run rampant and your body refuses to cooperate with what your brain wants to accomplish, you have to make a choice. This is were the fact that advice is much easier to give than it is to take and apply to your life. Learning about being empathic, I struggle with the overwhelming emotions going through my mind and body as I truly try to understand all the signs I am being given. I have always been the one who has put others before myself, making sure their feelings and emotions are always on a higher level no matter how mine would feel. I have felt the illnesses of others in my own body at the same time they were dealing with it. I have also had dreams which have predicted family pregnancies, as well, as death. Not as explicit as who exactly is going to be pregnant but maybe I just don’t have the talent to interpret what I am seeing. Last night I had a dream about a tiger biting at my hands and trying to attack me yet I prevailed and got away. I was watching the news this morning to see a clip about a zookeeper who was attacked by a tiger yesterday. The hardest part is the fatigue of my body. Presently I struggle to move, think and stay connected.
I know there is all kinds of advice and knowledge I can pursue about this. My migraines rage at this point only offering more pain and fatigue and symptoms to my body. At times I am almost afraid to stop and just think, I am not sure I want to hear what is going to go through my brain. So I don’t know where to turn and I will do something I am familiar with from my early migraine stages, shut down, withdraw and become quiet allowing words of paper to be my outlet. Words which I hope will make sense to me at some point in this never ending journey of life.
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.