Dear Peppermint; sorry you had such a rough morning and yes you will find that this illness will take you as low as you can go on a continual basis. I hit rock bottom a few times a week, but...as they say, when you are on the bottom there is only one place to go and that is up. I think that is part of the torture of dealing with this illness is the crashing scale is so frequent and its highs can be high and its lows are low. But as time goes on, you learn techniques to somewhat keep a balance to where your highs are not so high and your lows are not so low. I have learned meditation, exercise, positive affirmations, God, prayer, laughter, living in the moment, listening and respecting your body, and I stopped fighting the inevitable. That does not mean I concede to the illness, I am just not going to use my energy trying to fight the messages that my body is giving me. Energy is everything, I just keep reinforcing myself that this will pass and sometimes I just laugh my way out of it. It is a ridiculous illness to manage, so I will put my energy into positive things and use other techniques to bring me out of the negative. Your ok, your fears are real feelings, just try to find a way to cope through the negative, don't deny yourself or your feelings or pain just find a positive way to manage it and in time and perseverance you will gain some balance and control. God Bless, and be good to yourself, don't beat yourself up over something you can't change, just change what you can.

Jeanie

Peppermint , I too am trying to learn these coping skills as sometimes it is hard to see the light at the end of the tunnel . I have only been a member here a short time but have gotten invaluable advice and support . I tend to shut down and just want to be alone , and then I will realize how much worse it could be . I say a lot of prayers and try to think of the positives no matter how small they may be . I will remember the good times of the past and be happy in the memory of them.....The one thing that I have noticed out of having RSD is I truly appreciate the little things more and take very little for granted . Good luck , hope you find what works for you and take care !

this is exactly what my heart needed tonight.


hannah

Everybodys rock bottom is different and for different reasons.

When I was diagnosed with RSd years ago, I was not married and was only looking out for myself.

A few years after my diagnosis I did meet someone and got married.

Then a few years later we had out first child. A girl. But, a month before her birth, I was hurt at work. Started out as something minor, but has led to 3 surgeries, loss of job, stress, depression and know no income.

What really hurts me, even as I write this, is when my daughter was learning to crawl and walk, I couldn't walk or crawl. 3 surgeries meant I was non weight bearing and stuck in bed for weeks. I cannot ever get that time back to help her walk or times when she goes to the fair or to the store with my wife and I can't because of the pain. I lost absolutely the first 2 years of her life. Even today, I have to limit what I do. And still loose out on her at times.

The feeling of not being able to play with her and her being attached to her mother so much, that it is hard for her to just play with me. I am breaking that barrier down slowly.

It is painful everyday to see her and to now what I lost out on. But I will do anything for her and yes I do have my days where my pain takes me away even when I am right their.

My RSD, tarsal tunnel syndrome and back pain are nothing compared to the pain of not being able to play with your child or do things actively with your child.

I vowed never to let anyone treat me the way my company commander or first sergeant did when I was in the Army and diagnosed with RSD, but the laws that allow WC to get away with what they do to injured workers is a disgrace. I will fight for every dang thing I am entitled to. I will never back down till I feel I have gotten my just medical care.

I may never get those 2 years back that I lost with my little girl, but I will never let anyone take that away from me again.

Sorry for the rant as I really needed that.

Bugguy , Children are truly a gift from god imo , I could not imagine how tough those two years had to be .... I was diagnosed in 99 and now have a almost two yr old granddaughter who I have missed out on a lot of activities as well , however I am able to be with her on good days . She has attached herself much more to my wife as I cannot do a whole lot with her and that does hurt , so in a way I do understand where you are coming from. I have learned to hold on very tightly to the good memories we create and do the best I can with it . I think children have a 6th sense of things as when I am really hurting she will curl up next to me on the couch and just lay with me .... which is unusual for her as she is normally 90 mph .... Sorry for the time you have lost as I know it cannot be replaced but just make sure to remember the goodness a child brings into our lives ! Take care ...

Dear RUReady,

I am sorry that you are struggling with all of the details that this disease brings you too, the choices that we make under distress, the worry, the weakness that one feels when living in this pain and the losses that we all suffer. It is so overwhelming, and just plain wrong. I am sorry you have gotten invaluable advice and support from anywhere but especially here. Never feel that you are not being heard the fact is that you are writing and people are reading your posts. I do not know you, you don't know me, but I pray for you everynight. Sometimes, I just read the posts but feel so horrible myself I just shut it down and pray. I can share with you some of my coping skills and I do, I have learned to meditate, I have learned to manage my time around my pain, I have learned many exercise techniques, I love to cook, so I get creative with that, I keep my house up pretty nice, I am tackling the destressing issues now, but I mean seriously, I am starting to get lethargic. The truth is, I would rather be doing anything besides dealing with this disease. Focus on the little things, they mean so much, next time your grandbaby is in your arms really take a deep breath and focus on the moment, feel her in your arms, you will be amazed. Check out the sky after a horrible storm as the sunsets so beautifully, listen to the birds, go fishing, if you like to fish, take a walk and as you are walking look around and listen. You will learn your own way my friend, its not easy and I am not going to try to convince you any different. I have days where I can't do any of the above things, and it is so boring to say the least. But I do get up the next day and attempt them again. I know deep down in my heart whether it be a good day or bad day that I have done the very best that I could do. Maybe not what I use to be able to do, but that was then and this is now. I miss working too and plan to go back to at least part time, not what I was able to do, but I am keeping the door open for something that will work for me. I have great passion for animals so I am considering donating some time to a shelter. Just ask yourself every morning what can I do today to make somebody elses day brighter. There is no magic bottle, in time, you will find a way to manage and regain some quality of life. I am not there yet and may never get there, and don't care... but today I hugged my daughter and sent my son off to the lake with some cookies and banana bread, for this I am grateful. Just take it a day at a time, don't overwhelm yourself with too many thoughts and if you have to (like me my brain just keeps going) then try to fill them with good thoughts. You are a great guy with compassion and very knowledgeable, be patient with yourself, this is not a test, we are not in a hurry to get nowhere! LOL. God Bless you my friend, may peace be with you.

Jeanie

Jeanie , Thank you so much for the kind words ! By invaluable I meant - Extremely useful; indispensable , so for that I am very thankful .... I have been taking the small things in a lot more as you mentioned and with the help of this site and family am making the best of this stuff ! And thank you so much for the prayers , that means more than you will ever know ! Looking back I should have joined this site a lot earlier as I used to just drop in and read the post , but it is certainly and outlet when you need to just put your thoughts out their instead of keeping em bottled up ! Yours and others advice have truly been blessings and have taught me a lot of things about myself that I did not know....bless you and thank you "friend" ! take care ...

I so much appreciate all of the time you have each taken to share your stories with me. My one year anniversary is rapidly approaching and I think that's part of what bothers me so much, the fact that I was originally told I should be just about back to normal in a year, and here I am still in a wheelchair with no relief from the pain. If anything, it has gotten worse.

I'd love to walk again, but I think I could somehow accept being in a chair for the rest of my life. It's the debilitating pain and the opportunities that it takes away from me that I fear most.

Thank you again, each of you, for your encouragement. I don't post as often as I should, but I read faithfully. This is a tough disease; as much as I hate that each of you have it, it's at least comforting to know we're all in this thing together.

The dreams could come from the meds. I notice I have them more when I am on meds then off. Now I am back on the Methadone until I get this surgery pain calmed down and I have been having dreams again.

Pete is right, you will learn coping skills. There will always be times you can't answer the phone or keep appts. I go through that often. I get up and get dressed but can't even go out the door. I hate answering the phone. I have several people I know I have to answer too but others I don't answer. There's times too, I don't even return their calls.

I use to have that same nightmare about Bill even though I couldn't have run him off. Now I have a dream where he leaves and I try to get him to come home and he doesn't. I know that one is because he's deceased.

Don't give up on that walking thing. I do know a lady that the Anesteolgist I go to got her out of her wheelchair. She walks with a limp but she use to take walks with me when I lived in my house where Bill and I lived. She came a long way and I know that it is possible. A lot of the ones on here can tell you how far they have came and it''s took a long time to get there. It took us about 10 years to get me to where I can do things I couldn't do at first. We finally got my pain level down to where I didn't want to kill myself from it. It can be done. It will happen for you. The most important thing to me is your Drs. If you don't think they are doing enough for you then move on and keep looking until you find the ones that will help you.

Feel better soon.

Ada

when you are with us!! This disease can be such a gloom and doom..It presents us with a lonely world...one that we have trouble understanding and seeing what tomorrow brings..But I so appreciate all the wonderful advice others have offered..I can not top any of it..Just try to take each day as it comes ..and try to not be too hard yourslef..We do all we can and at the time the best to our knowledge...if we look back so much has changed in our lives due to our RSD but try to look between the layers and you will find some positive..it is within the simple small stuff..A look..a smile or even a hug..the chirp of the birds or a sunny day.. we can fill in the spaces creating a happy feeling in our heart by doing something nice for someone else...

Bless you ....this can and is a lonely road but know that we are here for you..we are here for eachother and I know that just warms my heart everyday!!

Hugz, Kathy...Keep smiling!!!