Today was a really bad day for me. I woke up in so much pain and hardly got out of bed the whole day. Of course this means I was over-thinking and stressing too much. It really hit me today, that this is what I have to face for the rest of my life. How do you guys manage this awful thought? I have not found anything that has worked or got rid of even some of the pain. I feel frustrated and tired of trying to fight this endless battle. Kids my age are just starting their "real" lives and I can't even manage to get out of bed. My mom really tries to understand, but I can tell at times even she thinks I am making up this pain. I am its easy to see why she would think this, how on earth can someone be in pain 24/7? I have always been the girl to put on a strong face and smile like nothing is wrong. But that is exhausting and I haven't been able to do it anymore. This has caused me to lose a really great guy and some friends. Its easier to hide from my parents since I live 100 miles away. I can fake being okay for a 10 min phone call once a day. I just hate what this disease is doing to my life. I feel like I have lost all control and I'm having a rough time understanding that I need to take it easy for my body. I feel like my body is failing me. Why me? This question keeps repeating in my mind. I know that this is the pain talking, but I had to share and hope someone out there understands.
I am sorry you are having a bad day. I had one of those just yesterday and I had a good cry which helped but it seems like the more upset and stressed I get I hurt more. I am also guilty of putting on a happy face when I am not feeling well too! The friends and family that stay around are the true ones who get what chronic pain and fatigue really are, I just let the rest go, I have no time or patience for people who refuse to believe in this condition! I hope you day is better tomorrow!
Sweetlittleb
I’m here. I hear you. I so understand. I wish I could help. Can I ask? What is your doctor doing to help. What meds are you taking?
I use deep heat and rub it everywhere. I take cymbalta and lyrica and Tylenol 3. I use the heating pad for extra painful areas. I take hot showers. I rest when I need too, and push as I can.
I hope that you can find a way to ease the pain tonight.
Hugs.
Joy
Sweetlittleb,
There is an old saying, 'one door closes and another one opens.' In other words, it means that you may lose some friends and gain some new ones who accept you for who you are. We only have control of who we are to a certain extent. Our body is the final judge on the matter. Your body isn't failing you but it is ill. Chronically ill. Fibro is as life-changing as is MS, as far as I can tell. We don't get all of the damage that auto-immune diseases send but we do get all of the pain, the fatigue, the despair. I am going to enclose a story for you about a woman who figured out a way to explain her illness to others. It also explains how we have to manage our illness both to other and ourselves. It is called the spoon theory: http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/ It also explains how to pace yourself. Pacing is everything in this illness. For instance, I'm going out with a friend tomorrow, which will kill me, but i didn't go out today. I'm saving my energy. Had I gone out today, I could not have managed tomorrow at all.
I strongly suggest that you print out the spoon theory and some of the conversations here and give them to your parents so they can get a feel for what you're going through. You could also show it to friends if they don't understand why you can't go out, etc. Some people will accept it, others won't. It's not really their fault as they are too young to understand true illness.
But it's up to you to take back your life and move on. By that I mean learning to be patient with yourself and how to pace yourself. Accept that you are ill but that you still are a living, breathing person who can still offer a lot, just in different ways than you did before. Learn to enjoy the small things in life, like sitting out in the sun on a warm day while the birds talk to you. Learn to indulge in hobbies that aren't physically taxing and that you can put down and then pick back up again. These are the things to build new meaning from. And, of course, from family and friends.
I do believe we understand all of what you're going through, so we're here for you. Fibro has changed us all in the same way but we're still here, soldiering on. Please come back and feel free to vent. Vent as softly or as loudly as you'd like. It helps a whole lot!
Gentle hugs,
Petunia
Checking in with you… How are you doing, I hope today is a better day. Today is my laundry day, and on Friday night I had extra energy so I already did it. I’m so glad. Today my hands arms and neck are still bothering me. I’m On the heating pad and the deep heat. A walk to the park is. On my list and a vacuum of the house. I will get things done as I push through the morning aches.
Hope your doing well.
Joy
Thank you for your kind words! :)
Thank you! I definitely needed your advice! And I have used the spoon theory a few times thanks to you and it seems to really help people understand! :)
Thank you!!! It was a tough weekend, but I am doing much better now :)
Thank you for checking in. I had a really rough weekend, but I am doing much better now! I hope your hands, arms and neck are doing better! I have major neck troubles and the heating pad has also been a huge saver for me. I have found that giving myself an hr in bed in the morning to slowly wake up and enjoy a cup of tea has really helped me.
I'll keep you in my thoughts :)
Bethany
....just checking on u my friend praying all is well w/u. Hopefully u r learning a lot from the group. I hate that u r dealing w/this @ such a young age. I can't imagine. My heart go out to u & hopefully one day soon ur parents will began to understand it all. (((((HUGS))))
I read your post and my heart aches for you. I understand completely how you’re feeling. My best advice to you is not to isolate. Call on family reach out to friends and keep coming here when family and friends can’t relate. You aren’t alone hon. We are here for you. It is all about support and doing what is best for you.
Hugs,
Laurie