I dont know about you but I have long since struggled with the "acceptance" part of my condition. I mistakenly thought accepting it would somehow cement the fact that I was weak, less capable, less important or just "not normal". That if I accepted it all of a sudden a right light would be shining on me and everyone would know I am no longer the person I used to be, or I can no longer do all the things i used to do. Well as you may also have also seen in an earlier post (one of my favorites) I came to terms with that aspect. As I hope everyone does at some point.
But, and this is a very big but, part of me has still been off. I talk to myself, I question myself and its taken me a while to figure out. But I have waiting for permission to be sick. I have been waiting to hear from a mystical unicorn that its ok to be sick, tired and angry. That its okay to sleep, cry or go slow. I needed some ONE to listen to my ramblings without judgment, and since I don't/didn't think it's truly possible NOT to be judged I have always been holding back my thoughts feelings and pain...just a little, while I wait. Wait for something I don't even think can happen, so I have been left perpetually feeling vexed.
I have exhausted every avenue, done everything I was told, researched until my eyes bleed, exercise, eat right, try everything under the sun to manage and even accepted, fight or give into my body, and still feel something is not right..it required further investigation.
My investigation has lead me to my epiphany, that I am looking for permission. Permission to say and feel everything I have been holding back. I talked to myself in the car for a very long time and said all the things I would NEVER dare to say out loud (for various reasons) and it felt great. The world did not end. No one fired me. No one judged me. I was not asked for a divorce. No one died.
I thought OH HELL if I heard this from any normal person I would gently suggest they seek immediate counseling. But pain changes people. A chronic pain patient can say these things and I would never suggest they were crazy. I would break down and sob because I knew exactly they feel. If we want to get through it, over it or around it we have to VOICE the good, the bad AND the ugly.
If you have ever thought anything similar and were to afraid to say it outloud you might want to try it. Even if no one ever hears it you have every right to think and feel it. No matter how crazy. You know it may be temporary, not true of your everyday nature and you may feel guilty about it but know YOU CANNOT be the only one. And if there is one (me) there is more. And if there is more, its NORMAL!!
It doesn't make you a bad person!!! It makes you human.
So although I love life, my family and friends of course there will times when I dont! Of course! Are you kidding me?! Chronic pain changes EVERYTHING!
That old saying "Pain is Temporary" was not meant for those of us who's pain NEVER, EVER goes away.
But, and this is a very big but, part of me has still been off. I talk to myself, I question myself and its taken me a while to figure out. But I have waiting for permission to be sick. I have been waiting to hear from a mystical unicorn that its ok to be sick, tired and angry. That its okay to sleep, cry or go slow. I needed some ONE to listen to my ramblings without judgment, and since I don't/didn't think it's truly possible NOT to be judged I have always been holding back my thoughts feelings and pain...just a little, while I wait. Wait for something I don't even think can happen, so I have been left perpetually feeling vexed.
I have exhausted every avenue, done everything I was told, researched until my eyes bleed, exercise, eat right, try everything under the sun to manage and even accepted, fight or give into my body, and still feel something is not right..it required further investigation.
My investigation has lead me to my epiphany, that I am looking for permission. Permission to say and feel everything I have been holding back. I talked to myself in the car for a very long time and said all the things I would NEVER dare to say out loud (for various reasons) and it felt great. The world did not end. No one fired me. No one judged me. I was not asked for a divorce. No one died.
I thought OH HELL if I heard this from any normal person I would gently suggest they seek immediate counseling. But pain changes people. A chronic pain patient can say these things and I would never suggest they were crazy. I would break down and sob because I knew exactly they feel. If we want to get through it, over it or around it we have to VOICE the good, the bad AND the ugly.
If you have ever thought anything similar and were to afraid to say it outloud you might want to try it. Even if no one ever hears it you have every right to think and feel it. No matter how crazy. You know it may be temporary, not true of your everyday nature and you may feel guilty about it but know YOU CANNOT be the only one. And if there is one (me) there is more. And if there is more, its NORMAL!!
It doesn't make you a bad person!!! It makes you human.
So although I love life, my family and friends of course there will times when I dont! Of course! Are you kidding me?! Chronic pain changes EVERYTHING!
That old saying "Pain is Temporary" was not meant for those of us who's pain NEVER, EVER goes away.
It is not temporary when your insides feel like they have swallowed all the pain, from all the souls in, all the world.
No one can tell you what an appropriate response is to that kind of life.
I don't need permission!This is how I can feel on any given day and I HAVE THAT RIGHT!
Judge me or relate.
On my bad days....
I wish I had no kids. I wish I never had to take care of anyone at all ever! I resent getting up everyday to pack a lunch. I wish they could put themselves on and off the bus. I wish I had a nanny to do everything for me .
I just want be left alone. Left to eat or sleep or cry at my whim. Never work, never workout. I pray God will give me a new body. Then I pray someone would die and miraculously switch places with me so I can live out the next 50 years in a "real" body.
I wish my husband would just go to work and never come home. I don't want the guilt of not being a good enough wife. It wouldn't matter if I cleaned or cooked. I wouldn't have to go places I don't want to go, or even be intimate when I am never in the mood anyway. He'd be better off. I wish my friends would go away because they are useless anyway. They aren't there when I need it and they can never understand what I'm going through.
I wish I was dead. I wish I could disappear. No one cares about my constant complaining anyway.
Sometimes I dont take a shower for days, even weeks, because I'm too depressed to take care of myself. Sometimes I only do the birdbath because it hurts too much to climb over the tub wall.
I only get dressed up for things so no one things of me as "SICK" when they see me.
or I dont really care to be dressed up all. What the for? Maybe if I look like crap someone will know by the outside how bad I feel on the inside and I'll get some freekin sympathy!
Rain hurts, clothes hurt, stress hurts, noise hurts, working, smells and washing my hair hurts. Even resting hurts!
And I dont know how anyone can have pain and despair for the future and still be living.
So again, even when I am generally a positive person, trying to encourage others, and being my own cheerleader OF course there are days when I want to say "F%*@K YOU" to life! F you to health insurance, F you to the doctors office, F you to pain, the dog, the mailman, the tv and anyone else a very BIG F YOU to everyone who asks if I've gotten any better! Just yell it out, let go and move on And if you need to do the same, go right ahead! I would not judge you!! EVER!! Because you DON'T NEED PERMISSION!! You earned it by getting up every morning and putting that foot on the floor!
You got that right! As much as I try to be positive and uplifting to others by making them laugh, I have those days, too - more often than I'd like to admit. Fibromyalgia sucks.
ReplyDeleteI think we would be super human if we didn't have those days. I am glad having a good old rant made you feel better. It makes such a difference saying things out loud, doesn't it? It doesn't matter if there is no one around to hear, it just feels so good to get things off your chest. I too try and be as positive as possible but there are still days where everything gets on top of me and I just need a good cry and shout!
ReplyDeleteI agree. I generally felt weak to ever say I am less than perfect out loud, but Im not. You are not. No one is. In fact I have come to see its a sign of strength to acknowledge you we not perfect. As long as we dont get sucked down and get stuck forever in self pity and cease to function, we are allowed :)
ReplyDeleteWhile I agree with the sentiment of your post, I want to say that we can't always see whether other people have a chronic pain condition. Also, I was a little ticked off by your comment about counseling, as if mental health problems are the same as a bad attitude. I understand that pain changes one's outlook on life and makes it harder to stay positive, but it's not like friends or others can always know who has a pain condition and who doesn't, so they can't always cut the pain sufferer some slack.
ReplyDeleteI never implied other people have to look at us and know where our pain is stemming from, nor did I say to judge someone else. I am simply giving a point of view from the perspective of the patient. And although mental health issues are different, bad days are universal. Some you can shrug off and some you can't. But I know being in constant pain can worsen mental health issues for those who already had them or developed them, so I always think a little venting is order from time to time. Thats all :)
ReplyDeleteHi Dawn, I'd like to talk about your blog and this post a little further. Please email me when you can at mtrucillo(at)recallcenter(dot)com. Appreciate it!
ReplyDeleteThank you for writing this. I was diagnosed only a dew months ago and I've been struggling with the acceptance aspect. All the things you've mentioned, I have definitely felt like that. I tried talking out loud because of this post, to my cat of all things, and it just felt like a huge weight had been lifted. So thank you so much for sharing, my day has got a little brighter because of this and given me that little spark that says this isn't the end of everything, just because you're in pain doesn't mean you have to give up.
ReplyDeleteI am glad, I did think twice before hitting publish but if I cant be honest about how I feel I would be feeding the fibro and making myself worse...Dont give up!!
DeleteDawn thank you for writing this post. You have just made me feel a whole lot better for reading it. I honestly could have written it myself, the way I have been feeling this weekend! I kept going to write my own blog post to this effect and felt like I couldn't do it. I might just go ahead and write it now and hopefully it'll be a cathartic experience.
ReplyDeleteHappy to hear it!! <3 Glad you found the post!
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ReplyDeleteThank you for this because I could swear it was me who wrote it.
ReplyDeleteGlad to know I am not alone on this!!
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