OK, lets get started.
I have a very rare, genetic muscle disorder. Which basically means that for no apparent reason and without warning my muscles go into involuntary spasms. These spasms are so excruciating that I’m literally paralysed with pain. Locked in whatever position I’m in at the time, totally unable to move. They can last from anything up to a few hours, days, weeks and even months.
There is no cure.
And as it’s so rare a condition no one willing to carry out any research into possible cause or solution.
The condition first appeared when I was a child, in my fingers and toes. At the time it wasn’t taken too seriously, mostly written off as growing pains, as is quite common in children. Or maybe I hurt myself whilst out playing and forgot, was one suggestion. But over time the condition slowly progressed to my knees, wrist and elbows which was a bit harder to explain away. Then it began to spread to my neck and eventually back as a teenager/young adult.
On one occasion, I remember I was out shopping in the supermarket, reached down to grab a loaf of bread from a shelf and bam! My neck muscles suddenly went into spasm. Imagine how utterly distressing this would be. You’re stuck in the aisle of a busy supermarket, paralysed by horrendous pain, unable to move, not knowing what to do.
Even writing this down years later causes me a considerable amount of anguish. And am sad to say was not an isolated case.
The only treatments offered are muscle relaxants and super strong painkillers. Believe me when I tell you I’ve pretty much had every prescribable painkillers known to man and then some.
In fact, one time when the muscles went into spasm in my back the doctor had to give me so much morphine (which had zero affect) that she told my husband, “Sorry, I can’t give her anymore because it will kill her. This is how serious it is.
To be totally honest with you if it hadn’t been for my husband and two young daughters I would’ve begged her to give it to me. That is no lie.
After years of enduring these constant muscle spasms I was left suffering from chronic pain. It was like having unrelenting, multiple pulled muscles on a daily bases. If you have ever experienced a pulled muscle you’ll know just how painful this can be. Imagine if it never got better and never went away.
Eventually, I was taking so many drugs I couldn’t think properly. I couldn’t function properly. I was lethargic all of the time. I found it increasingly harder to motivate myself and to this day I still have severe memory problems.
It was all I could do to take care of the girls and do a few bits around the house. More often than not they were taking care of me. I felt like a zombie. I felt I was slowly slipping away. And I hated it! I hated what it was doing to me and even more I hated what it was doing to my family. I didn’t know myself anymore. I had NO life.
Then, one day just over two years ago now I decided I wasn’t going to take it anymore. I wasn’t going to let this soul destroying condition rob me of my life. And I was definitely not going to allow it to destroy my family. No, I was going to fight back. I was going to stop taking the meds. They weren’t really helping anyway, just delaying the inevitable for a couple of seconds longer. And I was going to take back my life.
OK, before I go on, let me make myself clear. I am NOT recommending anyone stops taking their medication. Not by any means! Everyone is unique and their circumstances individual to them. I am sharing with you my own personal experience and knowledge I gained. Please understand this.
I did not make the decision lightly. It took a lot of soul searching and a great deal of contemplation. I was about to jump into the abyss and I was shit scared.
I think perhaps I will finish this post here for now. It has taken a large amount of my energy to write as it is so emotional for me.
In my next post I will explain to you what happened after I stopped taking my meds and how I dealt with the pain from then on.
I hope you’ll be able to come back and join me again. If you would like to leave a comment please feel free.
I love you all.
Welcome to my new blog Virgin Veggie.
Come in! Come in! Don’t be shy now. Everyone is very welcome here.
Let me start by introducing myself. My name is Nikki and the reason why I created this blog is simply because people kept asking me. And I figured, if I could help just one other human being by sharing my experience then the world would be a much better place.
So let’s get started.
Thousands of candles can be lighted from a single candle, and the life of the candle will not be shortened. Happiness never decreases by being shared.