Skip to main content

Understanding and being there

Chronic pain is real. It is like that booboo you had but forever. Get it_.png
People in general also get pain. What do they know about it?

  1. It is sucky: Yes, it is indeed unpleasant.
  2. I want it to end and know that it will: Yes, the pain is unpleasant but it will not last long. This is not quite our experience of pain. Pain can malfunction.
  3. Makes you have to rest and unable to work: yes, for acute temporary pain you have to take it easy. Indeed. Must be nice. When it is chronic sort of not our deal.
  4. The pain killers make me sleepy: What the actual hell? You get pain killers for That. Well, that just grinds my gears.
  5. Sometimes it still hurts when it rains: I will throat punch you.

That got aggressive fast. So... I envy temporary pain. No one wants chronic pain. I think we can all agree on that.



 

But what do they know about pain that persists?
  1. I think it is normal as we get older to have chronic pain of some sort: Chronic pain comes at any age. I had it fairly young. Used to have people tell me I was 'too young for it.' And a doctor said, in fact, I was 'too young for medication.' What the actual what? Also, I sure as hell hope chronic pain isn't normal as we get older or I am screwed.
  2. I have a friend with chronic pain, but then came shopping with me and she was fine. She is just really lazy I think: What the actual hell? You know when you get an injury and one day it really hurts, but the next day it hurts a little less... pain is Variable. And she likely felt that you know. There were consequences for spending time with you. We do have to pace ourselves but on good days we also want to do things. Feel normal for a bit. Pacing, by the way, is fundamental to coping. Pacing isn't the same as lazy.
  3. My friend said she was in pain but she was like laughing and smiling, so I doubt That: You can smile and laugh and be in pain because you can be in pain like always. So always is called all your life, so you still have emotions and live your life. To be miserable, screaming and crying all of your entire life would be contrary to things like survival. We try to cope with pain.
  4. I think it is an excuse to get out of work: I think it is an excuse not to empathize with another human being who knows more about suffering than a paper cut you got while filing. Sorry, that was uncalled for. Fact is, we want to work, some of us do all that we can to maintain any level of work that we can. When it becomes impossible it is like losing a part of ourselves and a shot to our self-worth. But by all means, judge us for it and make us feel guilty. We already punish ourselves for it.

Not everyone has assumptions about pain that persists. I think logically people understand it would be very unpleasant. I don't think they understand how unpleasant. Or that it comes with concentration problems, focus issues and fatigue. Or that it is emotionally taxing. Or all the the things we must do to cope with it. So of course, they do not get the depth to the experience. But I think they grasp it isn't a fun ordeal. Stigma, on the otherhand, is something we come across. A predominant one is that if we did something one day, why not This day?

The other side of the coin is this; people do not understand what you are going through unless you try to explain it. They do not know what to say. They do not know how to say it. Sometimes they say the wrong thing. They will make recommendations you have heard... a thousand times before... because they care about you, are thinking about you or just want to help. Most people are not inconsiderate or malicious intentionally. They want to be there for you in some way or another. You will lose friends, most of us do, but the ones that matter will stick around. Sometimes people will not get it, at all, and you do not have to validate your pain to them. But most people try. And that is what matters. Do we need them to 'get' the true depths of the experience? No, because those that do... get it because they have it. But they will be there.
 
together
Post a Comment

Popular posts from this blog

Signs the pain is getting the best of you

100 Symptoms of Fibromyalgia

There was a site that had this and I had linked to it on Tumblr but it is gone. So I had to hunt down someone who found my post and posted the whole thing in a forum. Anyway it is around but I'm posting it here so I will not have to hunt it down to reference it. Now we all know the major symptoms are the wide-spread pain, but our pain isn't just muscle pain... it can be nerve types of pain as well, and the fatigue and the insomnia. And even among symptoms there are some far more frequent than others, but it should be said we have categories... like the cognitive dysfunction, which is a broad one that has more than one symptom and we often just say fibrofog. The insomnia... more than one sleeping disorder. So the list is interesting.




GENERAL
__ Fatigue, made worse by physical exertion or stress
__ Activity level decreased to less than 50% of pre-illness activity level
__ Recurrent flu-like illness
__ Sore throat
__ Hoarseness
__ Tender or swollen lymph nodes (glands), especiall…

Getting through the high intensity pain flares #Blogboost

The crowded me out of the brain. Making no room for anything else. Distraction was impossible. You feel almost frantic with the pain but must be still.

What do you do? To get through it when you have no distraction?

I ask me this as I am really in the depths of a 9 level frantic level of pain right now. Hoping maybe some writing will be a distraction, but it isn't. As I said, the pain crowds the brain. I have to focus real hard to write and my head isn't clear. Too much pain to focus well. Things become quite difficult to do. 

I will say this: We cannot function. We have to just cope with the pain.

But we are Immersed in the pain, we what do we do?
We can and should rest and get through it the best we can. Here are some of the things I do to get through it.

Relaxation breathing: I can't meditate when in high levels of pain. It just makes me think about how much pain I am in. Just not a good idea. But I do do relaxation breathing. I close my eyes. I focus on my breathing. I even…