I’ve been waiting to write this and I don’t know why. This year has been a blur of all the darkest colors on the spectrum. The pain, lack of sleep, isolation, and lack of understanding of what I’m up against has sort of forced me to write this. As well as realizing some people were meant to exit my life so I could try to submit and battle this awful syndrome all at the same time.
Having one of the worst chronic pain conditions truly taught me about myself and others. It’s shown me I would have to be one strong person to face this. I’ve crawled on really bad days, cried silently, and then smiled in the face of this devilish syndrome with no relinquishment of pain. It’s all the same: burning, coldness, discoloration, numbness, and stabbing. Sometimes I stumble over words as if my brain cannot process what is going on like a computer network being ddosed with too much information. I tremor now trying to fight the signals as my nervous system decides to overload them throughout my body.
And there is nothing that can prepare someone for this kind of h*ll on earth. There is nothing that can prepare someone for the judgments, ignorance, and misguided advice you will receieve either. You have to prepare yourself. You have to read the best sources, fight for the best care, live at appointments, and shut out those who just want to criticize. You have to find the people who will help you. They are out there but hiding away from a world where a lack of empathy is ruling most of the mainstream thought processes. You can’t change some people either, but never give up hope in finding those who will understand. They are out there waiting to be found just like you. Be patient with yourself, kind to yourself and it will be okay. Sometimes we must fight battles we never expected, but just know you’re not alone. ❤
Hey there. I hope you’re dealing well with your pain. Chronic pain is really something that’s hard to go through, as it never abates, and never gives you a chance to rest. Wishing you all the best for whatever you have to face in life!
It is one of the most difficult challenges I’ve had to face in my life. Thank you for your thoughtful comment. Happy holidays!
Hang in there! The burning, coldness, stinging… I can relate to all if it, including the feelings you expressed here. I went through the first couple of years feeling very isolated and misunderstood – it’s taken a long time for people to understand the tiniest bit of what’s going on. Hope you’ve found some people to lean on!