Last weekend as I sat staring at the blank page in front of me, I was still surprised and elated that I had an entire day to myself and unlike past experiences it was filled with what I wanted when I wanted it. There were a few rough moments but when I consider the previous twelve hours (and the days to come) have been better than the last week. Especially this last week even though I had braced myself ahead of time, I just didn’t know I should have braced for a more serious episode.
I am a chronic migraine sufferer for so many years I don’t quite remember when they started exactly which is ironic because I can remember every special event they have ruined. I remember plays or dinners I was at where I don’t remember what happened but I could tell you what I felt minute by minute. It amazing how the mind works, especially when it’s operated by a migraine brain.
In the last few years, specifically the last few years since I have been going to the Montefiore Headache Center for treatment, have been radically different for many reasons, both bad and good. I can say since the Spring I was doing remarkably better whether it looks like it or not.
The worst attributes of writing a blog is that sometimes I can’t even do just that and I always have proof. I try to be as honest with my readers as I am with myself. Otherwise I am writing fiction and I don’t even read those kinds of books. When I searched on my blog for the word “migraine” so many pages turned up. I half expected that because from time to time I write about my illness when I see a change or when I need to expel it from my soul. But the titles that popped up in my search weren’t the migraine driven ones. Instead they were the ones about holidays, birthdays, and trips, even ordinary regular daily routines that were interrupted keeping me from writing.
That’s why you will see in 2013 that I am writing about things I have done months earlier, even worse I will be writing about Christmas in February. The thought of that alone would have made me sink deep into myself with negatives thoughts in prior circumstances. But with this new attitude and drive I am working on in 2015 (http://thequeenoff-ckingeverything.blogspot.com/2015/03/for-year-5-2015-2016-to-do-list.html) I am trying to accept what I get and not get upset.
I am doing by best to avoid negative ways of thinking. Actually I am practicing accepting myself mind, body, and illness. I try to be more open in my internal way of thinking. Opening my soul so that the path I am on is the right one. I also have an open heart training myself for the moments to come where my life’s work and dreams begin to come true. I would never forgive myself if I didn’t do the work needed for personal growth.
During a medical leave earlier this year I had many good and bad days but the difference was I could spoil myself resting as I needed and take less medication. In fact I am off sleep medication for the first time in over five years. Unfortunately this is not how the real world works and I had to return to commuting and working though thankfully the winter weather was over. That helped until the summer time humidity started.
Heat sensitivity has ruined much of my life these last few years. Luckily I found that it was because of a medication I was taken a lot of. To me it is know as the “fat and sweaty” pill. That is what it does to you, or rather to me. After being off it for a few months now I see the difference in my body inside and out. I also know now that I am an ugly sweater. Some people are unattractive when they cry well when I sweat I look like I have malaria. As much as it is uncomfortable it looks even worse than that. It’s embarrassing but I am learning to make peace with it. I also make sure that I dress as cool as possible and travel with a mini fan, freshening wipes, and water to splash on my face. It is the best I can do and usually works until my body cools down. But my heat problem isn’t just related to the weather it is the first sign my body is in distress of any kind. Then within a few hours, depending on what I am doing comes the blinding pain. You know a “headache”.
That is the most annoying part of any of this. Out of all of the chronic illnesses I could’ve had I know mine is far from the worse. I say my prayers thanking God because I know it could be much worse. However there are those on the opposite spectrum who have no idea what you go through or that what you go through is an actual diagnosed disease and not “headaches” other people get. Besides being rude the demeaning tone in which someone asks “are you ok?” is enough to want to strike them. You know who you are talking to so you know the underlying message. And even if I am “okay” in that moment it doesn’t mean pain free or that a serious migraine isn’t on its way. It is not a question that has an answer of yes or no. Only someone in your position can understand, actually anyone in your world should be able to understand but compassion is a gift it cannot be taught. I am learning that lesson more and more each day. While I try to avoid any negativity affecting me (and thus my head) I also have stopped allowing people to speak to me in a way that belittles my disability, which migraines are legally. There are thirty-six million currently suffering with this disability in the country right now.
If only everyone could see the tears in your eyes when you have been in the same pajamas everyday losing track of when the last time you were able to get changed. It makes you feel like you are in a mental institution in a uniform and without hygienic means.
The insult is when people think because you are home that you are having the time of your life when the truth is that I am hurting in a way they cannot imagine. It makes the mundane life even though things you don’t want to do seem like paradise.
It’s hard when other people are labeling you and projecting their feelings about your illness onto you. Chronic illnesses are such a personal thing and if you have never had any kind of trauma inflicted on your body without your control you don’t get to comment. Everyday I am doing what I can minute by minute. I am always honest when I am at my worst and my illness is not something I hide behind. This is largely out of my control because once I am too ill to do something my suffering (even on a superficial level) becomes obvious. There is nothing more I can do.
Despite my moments of frustration with mankind and myself I still remind myself of the positive changes I have made. I am currently on the least amount of medication, taken only once a day, that I have been on in the last five or so years. I am actually able to use one of those days of the week pill cases. That alone brings a smile to my face. It also gives me hope for the future. But don’t be fooled the pills in that case are in the double digits. I also still receive Botox and have my abortive medications.
I am of the mindset of believing that the universe will give you what you truly need no matter what you are going through, you just need to be open enough to take it from wherever it comes. This is the greatest lesson I am attempting to learn. Initially it took some time for me but now, “by George I think I’ve got it!”
My illness may be invisible but I refuse to be.
As Scarlet O’Hara would say, tomorrow is another day, and I will just take it as it comes migraines and all.
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