Let Me Tell You How I Really Feel!!!
Disclaimer: These are my opinions and it's okay if yours don't agree! As I lay here feeling as tho I can feel every....single.... part of my body and it all hurts. I decided to look for some inspiration. Something to get me through this trial. I decided why not? None of my other tricks are working. Not even my Gold Standard Go-To's. Like sitting in a hot bath, I think I've used all the hot water in the house! Probably good that no one will need any for several hours yet. I can't sleep because even my hair hurts. I started looking for other ways to deal with the pain. Tried guided meditation which has helped some in the past. NOTHING! I started reading other blogs, reading inspirations pages, and I found some that fit. Then I decided maybe my pain could help someone else so I'll Blog. And it'll be a good way to pass a few minutes where I can focus on something other than the pain. And I'll
Place the inspirational things I found helpful throughout the post!
Chronic pain is all psychosomatic (all in your head) people have been told! First, I would like to know how many (if any) o have been told that?!?! Secondly , I would like to know what gives those "Doctors" the right to tell you the pain you are feeling isn't real? And lastly, I would like to know if they have ever spent a week, a day or even a few hours totally overcome by PHYSICAL pain. No, I'm not talking about spraining an ankle, or hitting your funny bone. While yes, those things hurt, that pain isn't going to last. You can see an end in sight! With chronic pain you look for that light at the end of the tunnel and see nothing. Nothing but BLACK. There is no light. Chronic pain is just that, pain that's chronic. Pain that you will live with at some level EVERYDAY FOR THE REST OF YOUR LIFE!!
If I had a nickel for the amount of times I've heard "Well, I just don't know how you do it! how you put up with all that pain!" I'd be a rich lady. My answer is always and forever will be, "It's my only option. I don't have another. I can't just say you know today I'm not gonna deal and wish the pain away." There are days I wish I could, like right now. In this moment I wish I could just say "I'm done with you for now pain and it would go away!" But I can't. And neither can all the other hundreds of thousands who deal with similar things. So for all of you who also deal day in and day out with chronic pain I applaud you! You are some of the most courageous people I know! And it's because of you that I know I can keep pushing through.
"Courage is not having the strength to go on; it is going on when you don’t have the strength.” – Theodore Roosevelt (1858-1919), 26th President
The sad part to me is that most chronic pain sufferers & Lupus Patients suffers in silence.
They feel that it is a better option to suffer alone than to open up to a close friend or family member about what is going on. It's sad that we have to feel that way. But I know why it happens. Let me give you an example that maybe you can relate to. Have you ever been home from work on a sick day? Not welling enough to work but well enough that you can text or play on Social
Media? If you have been in this situation, did you receive any backhanded, dirty text, or comments about how much better you MUST be since you are up and on Social Media?!? Probably not. But the second you have a Chronic Illness or Chronic Pain and stay home and someone notices you on the Internet the rumors start rumbling about how you must not be THAT sick if you can be on Facebook. When it's quite the opposite. You still feel like a giant pile of horse manure, but Facebook is giving you a much needed distraction from what you are dealing with. And if you really wanna know, It's my business how I spend my time!! Not yours!!
Living with a Chronic Illness or Chronic pain sucks. That's just all there is to it. You usually end up losing out on opportunities in every aspect of your life, simply bc the pain is too much. No one should ever have to deal with pain to the point that they can barely physically move bc their entire body hurts. In this day in age there should be more medicines available to treat these horrible life altering disorders more directly. Those of you non-spoonies may be thinking, so go to the pain Doctor and get on some meds and move the heck on. Well, sadly it's not that easy. I am in the third largest city in my state and no pain dr will touch me bc I have Lupus and Fibromyalgia. They won't even see me in their office. So I, like many others across this fine country, are stuck without or get medication from a family doctor who is not trained in treating chronic pain.
In many cases we have those who are abusing the system and pain medications who have ruined the system the rest of us. Those of us who truly need treatment and medications should NOT be punished based on the poor decisions of another person. Okay I'll get off that soapbox.
But seriously if you've never lived a period in your life where pain took over don't be so quick to judge those who have. We who suffer would gladly give it all away to have a normal life again. We didn't ask for this, want this, and the largest majority of Lupus Patients did nothing to cause the situation that they are in. So please before you judge do a little investigating on your own. Don't assume that just because I look like a normal 32 yo female that you can yell or give me dirty looks for using a handicap tag. I have it for reasons that you may never know.
All we can do is keep fighting the good fight!! Keep doing all we can to advocate that we get good care and the meds we deserve. We deserve the chance to live a normal (or as close to it as possible) life just like everyone else does!
It does not matter how slowly you go so long as you do not stop.”
– Confucius (551-479 BC),