Every day I want to wake up feeling stronger. I do. I really do. I’m eating well. Walking some. Trying to get regular rest. And then, I still wake up with days like yesterday and today and realize that it’s real.

I can’t fool myself into believing that the chronic pain and stress and depression I’ve experienced for years now hasn’t affected my physical self at all. And I can’t deny that the chronic pain and fatigue that my doctor and psychologist says is real, a realness I’ve been so far unwilling to accept, is actually, well, real.

Acceptance is hard when there’s all sorts of symptoms but the diagnosis seems arbitrary. There’s no blood test, or scan, anything to say “this is not normal”. To me, fibromyalgia, or myalgic encephalomyelitis, seems arbitrary. It seems to me the diagnosis you get when you have this cluster of symptoms and the docs can’t diagnose anything else. It’s like colic in babies. A catch all when there’s no other reason. And that’s hard to accept, that there isn’t something that can be done to make me feel like my old self from 11 years ago. I’ve had chronic pain since my early teenage years, but it never, ever affected my ability to live life how I’d like to.  Until now.

Acceptance is also hard when you don’t look sick.  Joints and skin can be on fire so much that a hug hurts. The fatigue and fog can cover me like a weights in a cloud, yet I can walk into a room and no one knows. I can often do what I have to do, what I’m “supposed to do”, unless I decide I’m sick enough that I just have to rest. No one says “you look like you should be resting” and as someone who struggles with caring about what others think, well, you do the math. Since I don’t look it, I have to be the one to say “I don’t feel well” and that’s hard too. Wow, I have to actually be authentic and transparent about what’s going on inside me.  I don’t like that very much sometimes, especially when I’m supposed to be the one whose there to listen and care when others are hurting.  And I don’t want to be a complainer. I want to be the go getter, get it all done self I know I can be, solve the problem, do it, move on. This roller coaster of livingwithit does NOT jive with my personality or lifestyle.

But I’m learning that I’m going to have to eventually accept this and make permanent life changes instead of always pushing through to doing more than I should and then paying the price. But I really don’t want to. But I have to figure out how to make the roller coaster less.  Somehow.

It’s hard, but why? Because if I accept this as my fate I’ll have to accept the fact I’m living with this and I can’t have it all. I’ll have to authentic about it and risk not being the person I have always hoped I could be, would be.  Strong… I don’t want to be weak.  Ready for whatever… I don’t want to have to say no to things. Coool.  Always in control.

But I’m not those things and today’s one of those days I’m none of those things. I’m in pain for who knows why, wearywhelmed as I like to call it because sleep doesn’t solve it and I have lots I want to do, I need to do to be the mom, wife, pastor, friend I want to be. But I hurt so I have to admit that it probably won’t get done today. There will be people I won’t talk to today. There will be chores that won’t get marked off the list today. Or maybe it will, after my nap.

This feels like a raw, whiny post but I’m posting it anyway. I promised myself that on this trip to wellness I will be brutally honest about living with it.

My goal in writing this is to tell it like it is in ways I can’t when I have to be the mom because my kids need their mom, when I have to be the wife, because I want to be a good wife, when I get to be a pastor for people who I’ve been called to be in community with.

And that hope stuff from yesterday?  Don’t worry.  It’s still there.  But this is real. I’m living with it. Someday maybe I’ll fully accept it, understand why.  But for today, hey, I’m living with it.

I have made you and I will carry you.  I will sustain you and I will rescue you. Isaiah 46:4

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3 thoughts on “Living With It: Reader Beware, This One’s Real Whiny

  1. I totally understand where you are coming from. I too live with chronic pain and illness. When I was a late teen, I too was diagnosed with fibromyalgia accept I always had a high sedrate which is a non specific bloodtest for inflammation. I was diagnosed differently just a few years ago now with psoriatic arthritis, ankylosing spondolosis , spinal stenosis and a thoracic spinal cyst. I have always been a people pleaser and have pushed myself to do more then I should and paid for it for days later with not being able to get out of bed due to the extreme fatigue and physical pain. Being a wife and mom with no outside support I cannot afford to have these payback days. So I have learned I must not skip my morning nap after getting up at 6:30 am to get my kids up and ready for school by 8:15am. If I skip my nap to accomadate a request by someone else I will not function very well when my kids get home from school. They still need a mom, which means putting my rest/sleep schedule first to ensure I can function for them. So I have learned to put friends off of any morning get togethers. Plus, I have found Noone wants to see or acknowledge anothers pain especially right in front of them. When someone see’s you they say ” hi, how are you?” Most times they donot want the truth. With these situations I have found myself with very few friends left and no social life to speak off.I am getting to the point where I don’t really care if I have friends or a social life.I sort of stay in touch via facebook. My only social life and a very onesided social life so to speak.My life consists of naps and trying to get meals made and as many household chores done as I can physically handle. If I make it to church and bible study, the two places I desire to go most of all, I am having a great week. Thank you for sharing your post. Priorities are hard to lay down when you live with chronic illness and pain. .I am hoping and praying your post will help others to understand the sacrifices we make to help others in our lives.

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    • Thank you for sharing your story. I too really have to think “can I do this and still be there for my family?” That is definitely a priority. Very thankful you have a church and Bible study to be a part of. And it is true, ppl don’t want to acknowledge it. Understanding that has to be part of acceptance and for me, being willing to take care of me in spite of being acknowledged. I really have to get over that! Thanks again.

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