I put an ‘Out of Order’ sticker on my head today and called it a day…..

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I don’t talk much about chronic pain. Not to you anyway. As I walk with Jesus, I am called on not to complain and to be thankful in all circumstances. I do talk to my family about how I feel. Mostly because they ask. Not every day though. Most days when asked, my standard answer is “I’m ok.” Because in reality I am. I could have it so much worse. I could be unable to walk. I could be in the hospital. I could have terminal cancer. I could be dying today. Thank you God that I am not.

However, I am in pain a lot in my life. And then there is the occasional insanity you had no idea your body could even produce. I am pretty sure something Stephen King like is controlling the strings of my puppet. I can’t help but be a bit amused at this. It helps me to get through the day when I picture ‘ol Steve up there thinking of ways to aggravate and scare me. It’s all in your perception, folks.

I have been tired lately. I get fatigued every day from the simplest of things but the past couple of weeks I have been on a different level in the drained-garage. A lot of it has to do with my activities, but then, a lot of it isn’t. My activities, for any person with out an autoimmune disease, wouldn’t even be noticed. For me, they are an out of tune trombone. Loud and tiresome. When I am exhausted, crazy crap starts happening. Last week, I could see lightening every time I moved my eyes from side to side. No, I am not making that up. Ever seen stars if you’ve been hit too hard in the head? It’s sort of like that. I can feel it. It feels like chewing on aluminum foil. My eyeballs also sort of quiver. Like if you’re having cold chills and you shiver, my eyeballs do that. Makes seeing so much fun! BUT!! At least I can see!!

My pain.

My legs have ached for several years now. This swings between a dull toothache to excruciating Charlie horses. The weather, the level of fatigue I am experiencing, my stress level, if I’ve had enough cake this week, what’s on TV…Anything and nothing at all affects it. I have gotten every home remedy, exercise advice and ‘as seen on TV’ gimmicks that you can imagine. The rotten truth is, nothing helps. When you have MS, your nerves are like frayed wires. It is explained quite often as an electrical cord that is stripped to the wire. Sometimes you get a connection, sometimes not. That’s what our nerves do. So sometimes I get pain signals that aren’t real. Well, they aren’t real in any causation. They are real to me. Lately, it has started to affect my arms. Especially my right arm. From my shoulder to my fingertips. Some days, I just hold my arm against my body, my hand curled into a ball, so that I don’t move it and nothing bumps me. The pain I feel is rooted deep. It makes me nauseated. And there is no answer.

I have taken pain pills for several years now. I started taking them when I was diagnosed with CAS. The chest pain I feel is sometimes more than I can handle, so I have always kept a prescription of Norco. That’s a pretty name for Hydrocodone. When people hear you take that, they look at you different. I have taken this medicine for seven years. I have never once asked for an increase in the dosage. I have never asked for an increase in the amount of pills I am allowed per day. I take them sparingly. I do this for two practical reasons. Firstly, I don’t want to become dependent on them. Secondly, I have a disease that will only worsen with time. As I will build up a tolerance for this medication, I don’t want to reach a level of tolerance that will require me to be on stronger and stronger medication in a short amount of time. I don’t want to spend my sixties and seventies walking around stoned. Speaking of stoned, I have tried marijuana. It makes my heart race and flutter and scares the crap out of me. It doesn’t agree with my coronary spasms. I wish I could be a pot head and feel great. I know this works for a lot of people. I am fully supportive of that. Sadly, I am not one of them. So I deal. I deal with a fraction of the benefit of pain medicine because I refuse to subject myself to the side affects and the dependance on it. This doesn’t stop the judgement, however. It embarrasses me to call and ask for my refill. I am treated differently at the pharmacy when I have this medication filled. I actually stopped going to the Walmart that is near me. The staff in the pharmacy treated me as if I was refilling heroin. I know there is an issue with prescription medication, but not with everyone. You don’t know my path. I go to a small, family owned pharmacy now. They treat me with respect. But only because they know of my issues. When I first did my business there, I was treated with the same disdain. I finally told one hateful little angel that I had Multiple Sclerosis and Coronary Artery Spasms and that filling my prescription with a smile would go a long way with making my day more enjoyable. Then I felt bad for being ugly to her and I took her a Vanilla coke from Sonic the next time I went in. She probably threw it in the trash. Never take drinks from strangers….

I’m on a pain rant this day because it’s bad. I am speaking this blog today as my hands hurt so bad it is hard to type. My eyes are blurry this morning so my monitor is actually on the corner of my desk, as close as I can get it without it falling off. I am waiting on the delivery of an electric blanket from Amazon because sometimes the heat is soothing. Sometimes it makes me tired and will add to the issue because of my sensitivity to heat. It’s a merry go round and Pennywise is chasing me.

Sometimes pain is embarrassing for other reasons. Ken and I went to St Louis last year to see an MS specialist. While there, he took me to the zoo. It was warm out and the zoo is big, so he rented a little scoot-about for me to ride on. The looks I got were so humiliating. The exasperated sighs when I was in the way and they had to wait a minute to get their view. The rolling eyes when I had to say excuse me because I needed to back the scoot up a bit to turn around. One woman even told her child to move, I might run over her. I felt like telling the little girl that her mother was much more disabled than I would ever be. But I smiled and waited on them to pass. I won’t do that again. (rent the scooter, not refrain from maiming a human)  What people saw was a lazy, somewhat overweight woman who was too young to be riding a scooter. Remember this story when you look at someone and think you see the truth.

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All of this being said, I am thankful for my life. I am thankful for the struggle. God allows trials to bring you out on the other side whole. I do want you to stop and think. If you have someone in your life that has challenges, ask yourself what you can do to help them. Mow their yard, make them a meal, send a card. You have no idea how these things lift the spirit. It’s a struggle to maintain peace and joy sometimes when your body is in such turmoil. I have things to do today. My husband deserves a warm supper, my daughter deserves to have her favorite jeans clean and on her bed when she gets home. My sink was clogged then leaked all over the kitchen floor and I am out of trash bags. I can’t drive to the store to buy more…. BUT!! I have a new book to read and Kadey and Anna Claire bought pumpkin spice creamer for our coffee. So all is good today. The kitchen floor has been semi-mopped and I found a box for the trash. Always a silver lining. Well, most days. I am humbled by the Grace God grants me to make it through days like these. I am praying for comfort and motivation today. It would be awesome if you’d pray with me.

Thank you, as always, perpetual reader. Be kind to someone today. #loveloud

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2 thoughts on “I put an ‘Out of Order’ sticker on my head today and called it a day…..”

  1. I just wish I lived close enough to help you. You help me with every one of your posts. I still would come to see you if you ever wanted me to and if I knew where you lived. I am old and have a lot of problems too. I also try to not complain. But mine is nothing as debilitating as yours. You are in my prayers. And I love talking with you and love, love, love your posts. You are so witty and an expert writer. You can call me any time you just want to chat. 870-897-2975.

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  2. Everyone who lives with chronic pain relates to you. People who don’t, won’t. They simply can’t. Please keep on keeping on…and continue to recognize and share those moments of beauty and wonder that bless your senses daily, in spite of the struggles. You are a light for so many. Prayers.j

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