This is where you will find some of my thoughts on my love of writing and my journey in writing my first book.
Also how I live with not only being bipolar, but also with anxiety/panic disorder or live with chronic illness.
I just wanted to allow you a small glimpse into my world.
Friday, July 26, 2019
The Fear Of Pain
Anyone who has read Dune knows this quote. From the moment I read it, it has always played on a loop in my brain when I am in pain. Somehow it helps me take control of it and overcome it.
I remember lying in bed at night crying in pain. I was around the age of six or seven, maybe younger. My legs would hurt so bad that I wouldn’t be able to get comfortable. My legs would scissor back and forth until I would wake up with friction burns. My mom would come in and rub my back to comfort me because when she offered to rub my legs it would hurt so bad I would scream. The only thing that I was given was baby aspirin which would, in turn, make me physically ill. Turns out I was allergic to it. Doctors when asked about it just said it was growing pains.
It wasn’t growing pains. I wasn’t the right age for “growing pains” as they called it when a kid had a pain they didn’t want to look into further. Usually, if the kid was poor and the family couldn’t afford expensive medical treatments. I was a poor kid from a working-class family so I was just growing, there was nothing wrong with me. It would be years later before I would hear the words Juvenile Arthritis. All through my life, I have been told that I was too young to have arthritis, it was all in my head. No one would listen when I would say it wasn’t in my head it was in my legs.
What always kept the doctors from saying it was arthritis was because I had muscular pain as well. I fought muscles cramps at the same time as pain. I didn’t care what it was, I just wanted it to stop. I am in my fifties now and no one up to this day has ever given me any answers. So I still spend nights scissoring my legs back and forth trying to alleviate the pain that I still have no relief of. Now though I have the added diagnosis of neuropathy to add to the discomfort in my legs. How you can be numb and still be in pain simply amazes me. Don’t let anyone say it can’t happen because I am living proof that it does.
It has been almost six years since I received my neuropathy diagnosis and we are still searching for the cause. When people hear neuropathy in the feet their minds instantly go to Diabetes. I am not diabetic nor have I ever been diabetic. Because of my family history, I am tested quite often. My neuropathy is idiopathic, meaning there is no cause. At least the doctors can’t seem to find a cause, which means they can only treat my symptoms not what is causing them. The medicines they want me to take are ones that I am allergic to or have had bad reactions to. Where does that leave me? Living with the pain and discomfort. If you ever wonder why I am in a sour mood look no further than to the fact that I hurt and there isn’t anything to be done about it.
Living in constant pain has made me go from a contributing member of society to a reclusive, non-contributing member. I used to love to go out and do stuff, to be around people, to have a life. Now I spend my days living in a single room looking out the window at a world that I no longer feel like I belong in. My excursions from the house are to go to the doctor and to go to the grocery store occasionally. I have no life, no friends, nothing. All these aids in my depression taking a grasp on me and leading me down dark pathways. I fight to reach the sun, only to be dragged back time and time again into the depths of helplessness.
In the next few days, I have appointments with both my neurologist and a pulmonologist to continue my journey of seeking answers to the question of why I have neuropathy. I am beginning to feel as if we may never know the answer and I will be forced to continue treating symptoms instead of the cause. I am slowly coming to the realization that there may be no reason other than my drawing the short straw in the health category.
I just went to the first of my appointments and as usual, my blood work shows nothing suspect. The only thing it ever shows is one, I am not a diabetic. Two, I am low on some vitamin or mineral, and three, that I still have kidney disease. Those are my holy trinity. This time the only other thing shown was that on the day of the draw, I was fighting some kind of inflammation, which could have been as innocent as a bruise or hangnail. Once more I left with a prescription for a new medicine to treat the symptoms but not the culprit. I hope that the appointment tomorrow will give me more answers than questions.
Well since the last time I worked on this post, I have discovered the I have Obstructive Sleep Apnea. This was found after I did not just one but two sleep studies. The first one was inconclusive because they gave me the wrong CPAP mask to wear. Hello, I told them that I only snore when on my back. So they gave me a mask that just covered the nostrils. I rolled on my back and mouth came open thereby flunking the test. For anyone who has had the test before you understand why I just loved going back to be glued and wired all over again. When you have fine, long hair it is even a bigger joy having half of it ripped out the next morning when they remove all the fun little electrodes.
The second test was a good one and now I get to strap myself in like an astronaut going into space every night before placing my head on my pillow. I do have to admit I have been sleeping better with it, except for those times when I roll over on my back and snore and get dry mouth and to take a drink I have to unstrap just to wet my whistle. They need to make a higher setting for the humidifier. I guess it is good that I am single, I figure it might kill the mood in the romance department. Fella rolls over in the mood to get frisky, “Hey baby, want to fool around?” All he hears in return is a mumbled answer and by the time you get the mask off, he has rolled back over and gone to sleep. Or so I imagine that is how it would go.
I hope this helps with my neuropathy some because I would like to try to go back to work part-time, but as it is now I’m not sure what I could do when I stumble around on numb feet and half the time my hands are numb and I have a nasty habit of dropping stuff. As I mentioned I have a habit of stumbling, so far I have been lucky and not fallen but the neurologist told me at my last appointment that it was time for this girl to start using a cane.
I have been thinking about it for the last year but I have been talking myself out of getting one because I felt like I am too young for a cane. Well, the doctor vetoed that thought and wrote me a prescription for one. I also need to get a handicapped placard for those times when my legs are in spasm mode, but just to sign their name on a slip of paper these days, doctors charge you in the area of $30- and up. Who has that kind of extra moola lying around? If I had it, I would use it to buy food or some other necessity.
I guess in my mind the longer I fought trying to uphold the appearance that there is nothing wrong with me, then I can feel like my illness is just temporary instead of chronic. Sure the symptoms can be lessened by my eating right, getting exercise and taking medication but it will never be gone. All I have to look forward to is it becoming more debilitating over time. I have known most of my life that I will eventually be in a wheelchair and I am fighting that day off like a prizefighter.
I think I have rambled on long enough about the new happenings in my life living with one of the invisible illnesses. I really hate that name. If someone really takes the time to look at someone battling one of the invisible illness’ they would see someone who moves just tad bit slower because they are in pain. If they take the time to speak to you, they would find that you have to fight sometimes for words or try to remember something that has slipped from your grasp. If they would just take the time to consider how much some of us have to pep ourselves up just to go out into the world when we worry about falling or having our body betray us in some way. But that isn’t the world we live in any longer. The world we live in is full of hate, self-importance, prejudice, insensitivity, and just careless regard for all humanity. The days of doing unto others have passed us by to be replaced with do unto oneself and nobody else.
I challenge you today to take a moment and study those we share this precious planet with. Even those of us battling our own illness’ can turn a blind eye. For just a few seconds of your time, put yourself in another’s shoes. When you do I hope you find some small bit of understanding for one another. I also hope that you love fully and laugh often.