It giveth and it taketh away……………..

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.

The Dark

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.

When You Don’t Know Who You Are

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 but you can’t fix me

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?

6-4-17 June Migraine Awareness Month #MHAM

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.

1-20-17 Finding Yourself

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.

1-1-17 365 days

Everyone is wishing you a Happy New Year, reporting their accomplishments from last year, their wishes and goals for this year and I’m over here like system overload. Here is what I have to say about 2016 – 365 days of chronic pain, 365 days of waking up in the morning wondering how much pain my body will be shoving at me today, 365 days of wondering what I am going to be missing out on, 365 days of embarrassing moments of not remembering the word I wanted to say, feeling so stupid when it really is the simplest word in the English language, 365 days of not being able to eat or do what I really want to do, 365 days of exhausting my body to keep it moving so I don’t just lay in bed all days, 365 days of convincing myself that I need to make it until tomorrow because hell it is another day. So as you celebrate your New Year, your New Goals, Wishes, Aspirations remember not everyone has the same feeling about the New Year. To me it’s just day 1 of 365 days with a new number on it.

12-29-16 Thoughts

Life changes rapidly or slowly, you don’t even realize it. It’s the time of the year everyone reflects over what they have accomplished or lost. Our Christmas Card usually contains a letter of what the family has been up to for the year. I include what each one individually has experienced and end with wishes from the family. I always have my husband and daughters preview so it’s perfect. This year my husband asked why I never include anything individually about myself and I should change it before sending it. I am not sure what he would want me to say. In my head the paragraph read – nothing changed for me this year, still dealing with the same migraines, still working as many long hard hours as I did last year, still missed out on as many functions if not more than before. Who wants to read that in a Holiday letter? So I left out anything about me. People will see I am still alive in they know I am the one who writes the letter. But it makes me reflect, reflect on what I don’t want to think twice about. The pain, the heartache, the lost chances, the feeling of devoting my time only to work so the bills can get paid. I have come to hate the end of the year. These next few days can’t get over fast enough. Life changes for some slowly or rapidly in good ways making it better for them. Life changes for me slowly or rapidly not always in a good way making me want to get it over with.

10-3-16 October 6 word Story Challenge

He visited the grave. Empty feeling.
Was his mind playing a trick?
His heart skipped a few beats.

9-23-16 Messed up

How much more can my life get messed up? Years of severe migraine pain with limited to no relief. Then found a major trigger along with getting my first Botox treatment and I actually felt slightly human again. Only to fall back into severe migraine pain when insurance and money came into play for future treatments. I gave up on everything, stopped all my medications giving up on life and began to exist. Life changed once again and insurance had a major overhaul with great benefits. I got back to my physician, got back on medications and got set up for Botox. My injections were in July and the weather was then against me for any immediate relief. But over the last two to three weeks I have been feeling better pain and migraine wise. Now one would think that you would be jumping up and down rejoicing. But instead I’m walking on eggshells. I’m just waiting for the pain to start instead of enjoying the days that I have. I still have such chronic fatigue that I am still unable to enjoy the break. Then my mind clicks in. It reviews my life, my ups, my downs and tricks me into darkness. Instead of coming up from the darkness with feeling better and less pain, the darkness creeps closer. With relief I realize more what I have missed, what I am unable to do. How messed up can this be? Why can’t I just enjoy the low pain days and do what I am able to do? Why does the darkness fall and the light go further away? Messed up is all I can say. Messed up.