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Two sides of a coin.

Jan 17, 2016 10:27 AM

Hey guys.. So hopefully your day is going well. I'm actually experienceing a lower pain day. The usual spots are achinf but not stabbing. So I'm counting that as a win. On the other hand I still feel cloudy a d sluggish and kind of blah.. No real Interest I. Doing much of anything. It's very sunny outside but also very cold. It's actually really deceptive. To look out the window you'll say oh its so warm and nice out side but u stpe out there in short sleeves trust you'll run back in for all your clothes.lol
So..as far as my body and how I feel. Is this the best its gonna get? I'm thankful for lower pain today I truely am. But I still don't feel like I use to few years ago. Happy and energetic and ready to just get out and do stuff.
Any advice or encouragement? Please be truthful.. I'm a big girl..ha..

Jan 17, 2016 10:38 AM

Take the sun because it brightens the day. Stay in unless you have to go out. Let's enjoy what we have. Years ago, had to make the adjustment between what I used to be able to do and what I could do currently. Huge difference!!

Learn to appreciate what little we can do today and enjoy it to the max, pain and all!!!

My next door neighbor who has dementia teaches me new lessons everyday. She appreciates the birds, trees, cloud formations, etc. She hasn't given up on life and is truly a vibrant person! I'm so thankful for what little I have left.

Jan 17, 2016 10:43 AM

That is awesome donamel.. And ur right.. We shoudl enjoy what we have. Yesterday was a nice too and I went for a ride with me sister since she redis my hair. Having her do mg hair is nice I figured If I have to feel bad at least I can look good while doing it..lol...
I am working on getting use to this new normal and learning to live with it. It truely is an adjustment.

Jan 17, 2016 10:51 AM

Adjusting is a process and everyone does it at their own pace. When it gets difficult, ask yourself how you want to live the rest of your life. I decided that I want to live it to the best.

Jan 17, 2016 10:56 AM

Where I get stuck is, when I ask myself that question. I still measure "my best" on the best of three years ago... Lol thsgs when I get in trouble.. So today maybe I'm finally getting it.. That I may never feel as free and excited as I once did. But I can still get excited.. Just a little lower. Actually I'm finding joy in the fact that I felt like cleaning and organizing my bedroom this morning and instead of staying in my room to watch TV in the front room. So its a win for today. Lol..

Jan 17, 2016 11:16 AM

That's a great start. I don't want to sound preachy here, but we need to do an in-depth analysis of where we are. 20 years ago, I was bed bound, then came house bound, then able to enjoy outside. Take whatever you have and embrace it and life. It's okay to remember what you used to be able to do fondly, and be glad you have those memories.

Jan 17, 2016 12:15 PM

Newfibrogirl I know you're a big girl and you can take it so I'm going to say this... I don't think the pain will ever go away completely.. It will get worse then better then flare then better. I think at this point that you're getting used to that and you've adjusted accordingly. As you said that you're grateful for the low pain day.. That's a good thing. See, there is happiness in there with the blah's.. As far as your mood. I get that way myself. I was diagnosed with depression long before the pain started and it's actually harder to deal with sometines. It's hard to pull on the positives because it doesn't feel like there are any.. But there ARE. Hang in there, it's very dark, grey and gloomy and frigid here in NY. It hurts to the core of me. But I just closed my blinds so I don't have to look at it and am watching The Golden Girls!! Cracks me up no matter how many times I see them. Going to color to distract myself more. I hope you feel better. Sending you lots of love, gentle {{{Hugs}}} and prayers to bring sunshine into your heart and soul. πŸ’•πŸ™πŸ»πŸŒ»

Jan 17, 2016 1:21 PM

Lol.. Thanks always.. I'm actually watching golden girls too.lol.. I got to catch up on some sghows I had dvr'd this morning. And I watched the wind blowing which is another way I know it was cold as a cole miners toe nails..lol your right also both u and donamel im getting use to this new low scale life. And if hurts to know that I won't never be the jump out of bed get dressed go .. Type of girl again. I really miss her.. And I'm terrified of the day when or if the pain gets worse. I pray its a long way away. I know I have at least one more major surgery ahead of me. But I've also learned my lesson by trimg to think like a doctor. They always surprise me in a bad way. But for now I'm gonna enjoy the low pain day. Not screaming every time I get up off the couch or move my leg.

Jan 17, 2016 1:24 PM

Never say never!!! Just cause we suffer painful days doesn't mean there won't be days where we will be that jump out of bed and ready to go girl!! I still have those days and it's 23 years. Just never, ever give up and always remember that there are folks here who care about you.. {{{|Hugs}}}} πŸ’•πŸ™πŸ»πŸŒ»

Jan 17, 2016 1:33 PM

May advice Is to take advantage of a good day to do something enjoyable that you normally wouldn't do while you are in pain. I don't mean to do something that causes pain. But we might not go to a movie when we are in a lot of pain, or for a pleasure drive. So make good use of your day to add a smile to your face.

Jan 17, 2016 2:02 PM

Exactly, Profiler!!! By the way, thanks for the e-card. I appreciate it so much. You are a dear friend😊

Jan 17, 2016 7:32 PM

Newfibrogirl, I'm glad today is a lower pain day for you. My pain is actually worse today, and I'm betting on the cold. While my trigger points are much more tender and deeper feeling, my whole body is stiff. When I get up from resting it takes several minutes to be able to stand straight. Although summer heat & humidity is though, cold weather is awful for me, and its been this way for over 10 years.

Like Donamel, I take whatever comes my way and try to find the little bit of happiness I find, even in the rain. Donamel's advice is right on key for me. I accepted last year that when I'm having a good day (of less pain) then that is the best it will ever be; that my life nor body will ever feel as good as it did before 2009 when I was really getting sick with all this, and some of that is just shear body aging; that I will never feel like I did, mentality, physically, or emotionally, because this is my new normal life. As depressing and shocking as it was too finally admit it to myself and accept it, there are days I still yearn for the old me. But then I give myself a kick and remind myself that daydreaming only wastes time. I wish I could give you an uplifting message, but this has been my experience. I choose to do like Donamel's neighbor, and focus the sunshine, birds, clouds, etc. when I'm feeling gold or bad. My dad once told me, "When you make a decision to do something, go forward and never look back with regret. Otherwise you will just be wasting time and energy." Of course he was speaking in business and personal relationships, but in my life it applies to the medical changes as well.

Thanks Donamel, for the positive reflections of your neighbor! Hugs to all! πŸ™‚πŸ™πŸŒΌπŸ’•

Jan 17, 2016 7:49 PM

This is a wonderful community. I get strength from reading each one's messages, whether they are of despair or hope. The topic of two sides of a coin is so on time. I'll be undergoing a total knee replacement on the 2nd, that should have been done ten years ago. The pain breaks through even though I'm on a small dose of dilaudid. On top of it is increasing pain from a recent shoulder reconstruction surgery, pain from autonomic small fiber neuropathy (that nerve pain is intensifying), etc., etc., etc.

Monday before last, I encountered severe symptoms from mold exposure. That's one side of the coin. The flip side is that I'm still on this side of the ground even though my sarcoidosis and other medical issues tried to take me away from here. Some have not been so fortunate. So, I'm thankful for the pain (lets you know you're still here) and hope the knee will heal quickly enough to begin a garden this year. Life can be so painful and yet so wonderful at the same time.

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