Central Pain Syndrome, Chronic Illness, chronic pain conditions, Complex Regional Pain Syndrome, invisible illness

The urge to write – Is it the pain talking or is it the fear of getting lost due to pain?

Where should I start from? I have so many questions lined up. Probably, I am going nuts.
I mentioned PAIN. Its in block letters because it’s excruciating and suffocating. Have you ever experienced a feeling when you just cant breath when your lungs are functioning normally. But, it is just that feeling when you want to grab some more oxygen for a little while. That extra gush of air would work as a miracle, may be.
The hard truth, It doesn’t. Our body is not as we believe it is. It is way messed up than we are emotionally, when we go through a break up. I guess you must be wondering why am I writing all this.
Well, lets just come back to pain.

PAIN /pein/ – “Pain is an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage.”

It is that annoying feeling you get when you bump your leg, fall down and hurt your elbow, when your stomach hurts, when you get your legs waxed. Lol! I can give you more examples but I am sure you understood what I am talking about. It’s a common feeling everybody gets. What is so big about it! It’s a common usual daily thing everybody goes through.
But, my question is what if that annoying feeling which we call PAIN, stays forever. It plans not to leave you. You are constantly in pain. Something like, pain is a part of you like your heart pumping, inhalation and exhalation of air. The constant throbbing or may be a dull ache. It’s there you know it, you can feel it but you can’t just make it stop.
What will you do in that situation? Run to a doctor? Tell him how you feel. Ask him to fix it. Or probably let the medicines take its course.
Another question, what if those medicines, frequent visit to the doctor, surgical procedures nothing can take your pain away. Pain wins! Pain is the real ruler. Pain is like John Snow. It comes back from death also and will stick till the end. Your life long companion. Your partner/ lover might just leave you but pain won’t.
Too much Pain talk. Isn’t it?

This is how i feel everyday. I have a chronic pain disorder.
There are many chronic pain disorders, some most common ones are arthritis, fibromyalgia, multiple sclerosis, migraine. You can name many more. You would have come across some of them yourself. Some family member or friend or acquaintance suffering from them. Out of all these disorders I have a very rare one, it’s called the Complex Regional Pain Syndrome (CRPS). Heard of it? I am sure you haven’t and if you have then either you are suffering from it or you have someone known suffering from.
If I have to explain CRPS in lay man terms I would call it a devil in disguise. You are in constant pain, makes your body weak, keeps you tired always and slowly and slowly drains all the happiness out of you.
“What nonsense is this. You sound mad. Don’t act like a baby. You are exaggerating things up. It’s there in your head, you are making your mind play such games on you.”
The constant response you get from people (so-called friends).

I am still wondering why am I writing all this because people who know me (acquaintances, so-called friends) will say that she wants attention.

Bloody, attention seeker!

 

My friends will say, “we can’t feel you but we know you are going through worse. We are there for you and if writing about it makes you happy then just do that.” But the real reason why I want to write about it is? Because the pain is real. It’s not in my mind. I am not faking it. Anybody suffering from it will get that. But, the general population won’t. Some might understand, but not everyone around you.
It is a condition as painful as cancer. It sucks your life. Cancer kills in the end ,so, the suffering ends. CRPS is your companion, it doesn’t kill you but makes your life miserable.

 

7 thoughts on “The urge to write – Is it the pain talking or is it the fear of getting lost due to pain?”

  1. Pain is a horrible thing to have to deal with all the time. I get so frustrated with pain, I can’t even begin to put it into words. For me personally, I know acceptance can be the most difficult part of being diagnosed with something that is lifelong! Denial is so much easier. I was diagnosed with Multiple Sclerosis 16 years ago and denied it for as long as possible. I decided a little more than 2 months ago to start this blog and it was the best decision ever! I have been able to communicate with people all around the world with chronic illness that understand how hard it is! I actually set myself a goal that may seem crazy to a lot of people, but I want to do one post every day for a while! It is so amazing to be able to express my feelings and help others deal with issues!! I wish you lots of luck with you blog and if I can do anything for you, do not hesitate to contact me! I look forward to reading more of your posts! Take care!

    Liked by 1 person

    1. Thank you Alyssa. I can totally understand your feeling. Specially acceptance. I am still fighting with it. My motive to write the blog was acceptance and to motivate people around me to be motivated too.
      I would love to stay in touch with you and try writing more blogs and reading more and more blog posts.
      I am glad to connect with you. 😊

      Like

      1. It is amazing how much blogging actually helps!! It is normal to fight with acceptance, I understand! I am glad we have made connection as well! Please let me know if I can help you with anything at all!!!

        Liked by 1 person

  2. I am sad that you have so much pain, but thank you so much for the wonderfully written post. I have struggled to explain what is this kind of pain like to even the closest people, but I find myself struggling for words. I always compare the pain to a dementor from Harry Potter or a sorcerer-demon that has imprisoned me. And I know exactly the kind of pain you are talking about when you cannot breathe, when time has stopped, you are alive but in a suspended state of animation, when the mind stops working and is filled with the deluge of pain. And it does not stop. All your body parts are functioning perfectly, and yet you are bedridden for months because you are in a “pain coma”. You find it incredibly hard to talk, and pretty much impossible to do anything else. And since CPRS pain s the highest on the scale, so I imagine your pain must be even worse than the worst I have known. I appreciate your spirit and wish you the best.

    Liked by 1 person

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