You Learn to Live With the Unexpected

 
 One of the hardest adjustments I have had to learn to live with is learning to "pace" myself, accepting that I can no longer do the things I once could. Believe me on those BEAUTIFUL DAYS all you want to do is get outside and take advantage of EVERY SINGLE SECOND OF THE DAY. For the most part during the "warmer months" I tend to feel better, but not always. I still have to remember that my body just can't go on a mile long hike, or go out every day and do things, simple things even things that may not require that much energy to others.
You may have (or not) heard about the "spoon theory" or heard people who suffer from invisible or auto-immune, chronic pain disabilities referred to as "spoonies", yes it is a funny term . . . I even kind of laughed when I first heard the term, but now it's the best way I know of how to explain to others how I have to ration my energy to people. You see most people have an unlimited number of spoons; those of us who suffer from a chronic illness do not. So for example we have 12 spoons each day, that's it, no more.

Once they are gone they are gone. Now we can always borrow from the next day, but then that's one less we will have from that next day and so on. Then eventually (usually sooner than later, or for no reason at all) I wake up with no spoons or just crash and watch my remaining spoons shatter at my feet . . .  and  just like that I am bed ridden for days. By the time this is posted my Birthday will be over, because I spent my birthday and the days before in bed not able to get out of bed. Just like that my plans canceled for the rest of the beautiful week. I was to weak to get up, even check my phone to call or text anyone back. My pain so bad I could not even take a shower. This is what it's like to live with a chronic illness, You learn to Live with the Unexpected and there isn't a DAMN THING YOU CAN DO ABOUT IT. When you run out of spoons and you are hit with an overpowering exhaustion and pain. When I say exhaustion I am talking about an exhaustion that weighs your whole body down, and just because you can't get out of bed doesn't mean you're sleeping, because the pain is so bad just when you get comfortable you accidentally move sending a jolt of pain up your back or down your leg.

Or your head is pounding; your legs feel like they have pins and needles, your neck and back are aching. Just when you fall asleep the faintest of noises wakes you and the hell begins all over again. You are thirsty but too weak to get up or move, this can go on for days, and my longest "flare" I was in bed for 10 days. This is why I don't call, text, get on social media; this is why you don't hear from me. This is how I spent my Birthday. You learn to Live with the Unexpected, and you learn to Accept it. You can read how the spoon theory was born here on But You Don't Look Sick which was written by Christine Miserandino. 

Do I get angry? Sure, who wouldn't, but I don't have a choice, this is my life. The worst part is the guilt I feel for the burden I feel I am on my family, the ignorance from the people who refuse to "understand" my illnesses and the loneliness and isolation I endure from the friends I have lost. I meet people all the time, and I hear constantly "How Strong I am" or "I Promise your Health won't be a Factor in our relationship" or "I would never leave because of your health", but it only takes ONE time, ONE time for someone to actually see my narcolepsy kick in, or me to have a flare, or to get sick and end up in the hospital.

Next thing I know they are headed straight for the door. At first I thought it was because they just didn’t like me anymore, but I learned that for some it just too much, they could not handle seeing someone they cared about going through something they did not understand and not knowing how to handle it . Right now there is no cure for my disabilities; even though I am not dying today I have come close more than once.


I know I am lucky to here, you could say I am on borrowed time. Almost a year ago my Dr. and I had a conversation and I remember this conversation more clearly than I remember most. He had been over my medical file many times (believe me that’s an accomplishment) and told me he was going to speak about me at a medical conference coming up, and he asked me an odd question. He asked me if I thought humans had 9 lives like cats. I sat there for a minute and he went on and said if any human did, I did. It was a miracle I was still alive. Against all medical odds I should not be here . . . We both sat there for a moment in silence, and I realized how incredibly lucky I was to be alive. 

I had never thought of it like that before, but he was right, and it was at that moment I realized that I had not died for a reason, that there was a purpose for me being here. What, I had no idea. My Dr. and I talked about this that day in great detail and it was one of the scariest and enlightening conversations of my life and maybe that is why it sticks out more than most. Which brings me to about a week and a half ago, I struggle with whether or not to share this but I feel that I have to as it is almost insanity that this happened.

I was at the store, getting ready to leave and I wasn’t having a good day. As I was sitting in my car a gentleman approached my car, yes it startled me, I was parked in the handicapped spot, under the light, and there was a police car, and the officer was in car less than 50 feet. So I was fairly certain this gentleman was not going to harm me. He was also neatly dressed (which I know doesn’t make a difference), but it put my mind at ease. My window was already down because the night was a little warmer; the gentleman was younger and asked me if I was ok? I admit I was a bit standoffish, I had the beginning of a migraine and was feeling nauseous. I just wanted to get home and I told him so. He then asked me if he could pray for me, I was taken aback, I thought sure what harm could it do. 

He asked if he could take me hand, and when he did he jumped and he looked and me and asked if I was taking care of myself? I looked at him, and said nothing; he asked me if I was doing what I needed to do to stay healthy with my illnesses? He then told me he had a strong vision. And he prayed that I would stay healthy long enough to complete my purpose here on this Earth. I didn’t freeze, like most people would I long ago made peace with the fact that I will probably die at a younger age. When he opened his eyes he looked at me expecting me to be freaking out, I just wanted to know what the vision was, and he said he saw light and beautiful colors. I knew exactly what that meant, for I had seen that once before. This I will explain in a later post. I told him I had made peace, and he told me I had a very special purpose, and then I would be called home and he walked away.   I know this sounds insane, and maybe it is. But I have never met or seen this person in my life, how could he have known about my struggles and bringing up a purpose for me being here was what really sent a shiver down my spine for a split second. My Dr. and I had this conversation almost a year ago and here was a random guy telling me something similar, it was to say the least peculiar. As I said you learn to Live with the Unexpected.

So as I begin this year of my life, I have no expectations, that is one thing I have learned to not expect anything, that way you don’t get hurt. But I will continue on with this part of my journey and I hope you will continue with me.
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Since this post was about Flares and pain I wanted to share something positive that makes me feel well and some ways I cope with pain. One of my favorite ways to cope with pain and stress is through Mindfulness. I also use Guided imagery, Meditation and specific exercises for pain.

Mindfulness - Mindfulness takes practice but is a great way to reduce stress and is great for pain, insomnia, stress,  just about everything and anything, please check out this website here http://www.mindfulnesscds.com/  to learn about the pioneer in Mindfulness Jon Kabat Zin. If you have any questions let me know, He is one of my favorites and there are MANY places to downlowd his Mindfulness Meditations for free!

Meditation and Guided Imagery  - Here is my Pinterest link to my board of my collections of meditations and guided imagery that I have, I am always adding to this board as well.  All are free :)

Exercise  - Another way of dealing with pain is exercising here is my Pinterest Board for exercising with Chronic pain.

Remember One Day at a time, sometimes One Hour, Moment, Breath  . . . 

I leave you today with this 

Butterfly Kisses

Kates Marie