When it pains it pours!!!
 

yep that is what i meant.. Sometimes I can go weeks in a level 8 pain, but days like today happen and it feels like I cant recover.
I try and try to keep what i feel hidden, so others can continue on with their lives as normal as possible(ie My family)
Last night my oldest son started to cry and when he was able to voice the reason behind it, it took alot of will power to not bust out myself
he shared that he is upset that he nolonger has a father to play sports with, just tossing a ball back and forth, and country walks where I would teach him about the wild life and nature surrounding us, (including stories). He made mention of a boy scout father son bowling game he had . where my wife had to take him.or the multiple trips they have gone on like disney and hershey park where I had to stay home. or parties I do not go to. or the many trips to the beach I can no longer attend. He misses sitting on the beach with me,where I would bring out shovels and start digging trenches, and pools and encourage other children on the beach to help. he remembered the last time I was on the beach I had about a quarter mile of children digging long trenches, when we left the beach we left multiple pools and castles and moats etc.
I had no answer for him, what do i tell him.then today My pain level raised to 10!!!all day, even now and I was completely useless . Still no answers for them. Im still looking for the answers for myself, Im supposed to be "DAD" THE GO TO MAN, the protector, the answer man. instead im just .... hmm I dont know what I am, I just hurt, And I have no answers to anything anymore.
I have noticed lately that the higher my pain the harder it is to stay in the game at all. I spent most of today in my rocker, just sitting there and trying to pull it together. ... Im pulling at hairs now looking for the strength to go on. though I know tomorrow will come despite me and RSD.

Bless your heart. I know that this is hard. just don't give up on finding your cure and remember that each one of us is so very different. What works for one may or may not work for another.
Your pain could possibly be elevated today because of the stress and being upset but it is good that your son is able to express himself. When my mom got cancer when I was 4, I didn't talk to her and shut everyone out when she returned from the hospital.

Is there anything you can do with him? :hug::hug: How old is he?

Oh...now you have ME crying.

I am so sorry for what you are going through. I agree with Alt that your increased pain today is because you are so upset and stressed when thinking about all the things you cannot do with your son and your family. We all know what stress and frustration can do to the RSD pain levels. Been there and done that.

All I can suggest (and I'm sure it's something you know and are trying to sort through on your own) is to really focus on what you CAN do. I know you feel useless and like you can't do anything but I am sure this is not the case. For example...can you get out of the house at all to maybe visit a park or something with your son (I don't know how old he is...if he would like to play at a park or if it would just be to maybe have a picnic or something)? Sometimes just BEING there even if you can't take part in the activities can mean a lot because you are sharing the experience. You mention the beach...is there a reason you can't go to the beach? Is it too far, too hard to get to, etc? Maybe you could find a place where it would be easier for you to be there even if you couldn't necessarily play with your son in the sand.

I know you can't toss the ball around with your son...but could you take him to some batting cages or enroll him in some sort of training program or sports program where you could watch him? That could be a fun thing for him and your being there to support him would be very meaningful for him...even if you can't physically participate in the activities yourself. You would still be a part of the experience.

If you can't leave the house...what about things like board games, puzzles, or even watching tv? When I was little I remember having these "movie marathons" where we would watch things like all the Star Wars movies or an entire miniseries. These days you could do this with certain tv shows. We would all gather together as a family, sit down with some popcorn or meat/cheese trays, or whatever and just make a day of it. It was just a way to visit with each other and spend time together without really going out and "doing" something. You could have a game night or set aside some times every night to work on a particularly BIG puzzle. I love doing puzzles with my family...and my physical therapist actually said puzzles were good therapy for my hands because they work on precision movement in my fingers and hands.

If travelling out of state isn't an option...what about seeing if there is a more local resort destination where you guys could get away from it all for a long weekend or something. If you can travel out of state I would definitely look into destinations that are very handicap friendly and they might be able to make accommodations that you wouldn't have thought about. Then even if you couldn't do all of the activities you might still be able to BE there and just be part of the experience.

I hate making any of these recommendations because I know we all have different limits and you may read something and think, "I can't do THAT." But try and think outside the box and not about what you CAN'T do but what you CAN do. That has helped me a lot to find joy in the things I can do and not focus on all the things that are beyond my reach. No...you might not be able to go hiking with your son, build castles with him on the beach, or play catch...but there are ways to spend time with him and be a part of his life.

One of my favorite quotes is, "Just because someone doesn't love you the way you want...doesn't mean they don't love you with everything they have." Your son may not really understand this now...but he will come to later in life as long as you do everything possible to give everything you have no matter how much or how little that is. Don't give up...just do what you can. Your son loves you and clearly you love him...these are the important things. Enjoy every moment you have together regardless of what you are doing...it's just important to BE together and to enjoy that time.

Take care and good luck.

Thank you for your responses,
I do go to his games and practices and try to coach and support him, we also go to parks(zoos) and aquariums, and I have taught him chess and as a family we do games during dinner, as well as all of that we watch TV together, we share the same likes as far as cartoons go and some of my shows,I have even read books in which he started to read so we had something to talk about just he and I. but he knows that I took my daughter and him to work with me landscaping and taught them what I could before RSD, long traveling is out, by the time I get there I am of no use to any-one. movies are as money allows , we share our likes with music but that is shared through out the house, he is one of four. I understands what he is looking for , and the fact that I am getting worse is weighing in on this as well. I try to do all the things he needs when Im having an ok day(pain levels around 7/8. )but being on my feet is getting harder and harder as well. I am teaching them all to cook and creating recipes with each of them individually but it seems insufficient for him. He is going to be 12 soon and the time will come quickly where spending time with me is out of the question(no dad I wanna hang with my girl ) . As far as the beach goes, I can not cross the sand, or rocks and gravel as it is here. I have tried with bad results , it spoiled every-ones day . He is just very specific now. all I can do is see what time does and do what I can when I can. Thank you for your responses , they are well received

It seems you are doing more for your son than you give yourself credit for. I know of men that don't do a fraction of what you do with/for your children. My husband's father for example didn't come home from work until 11pm. He did stop in for dinner with the family. His father kept promising that when my husband was older, he would take him to places... My husband's father died when my husband was in his early teens and my husband really never had any real quality time with his father. The fact that your son could share his feelings with you is great testimony to the father that you have been for him. I'm sure your son is worried about you- as most of our families worry for us. He loves you and doesn't want to see you suffer. And, how you handle your illness- with courage and open discussion is setting a great example to your children as to how to handle adversity. You are right- your son will soon want to spend time away from the house, with friends and girls. But this is a normal growth process. Give yourself a pat on the back for the son you have helped grow into the caring person he is today.

I agree...you are doing a lot for your son. At his age now...it may not be everything he WANTS (or everything YOU want) but as he gets older he will know you did everything you could. That's really what is important. Just keep on doing what you are doing and fighting for every moment of quality time you can have with your family.

My son will be graduating from college next year and my being ill has had a profound effect on him. In hindsight, it was less about what he missed and more about how difficult it was to live with someone that was profoundly miserable and living with prolonged, severe pain for a number of years. But at the time, I was very concerned about these same issues.

Your relationship with him must change and adapt because you are a different person. Accepting that your body has certain limitations (until/unless you achieve remission) is key. Dealing with your own mental health has to be a priority, for your children's sake! The guilt and depression are likely going to be bigger issues long term than missing out on certain activities. I've learned it isn't "selfish" to make my health a priority, because when I don't those around me also experience the aftermath of me failing to do so! Even when I try my best to hide it, my closest family members can still tell.

The first few years after developing RSD/CRPS were in some ways easier for both me and my family. It was at the point that I started accepting that my health might not improve that things got tougher, as well as the sheer exhaustion of not sleeping well for so long, and just a general depletion of mental and physical reserves. Everyone reacts differently, you might be going through your rough patch now, or it might get worse somewhere down the line. Please tell your docs and ask for additional help for you and your family's sake. I think those that are most stoic actually have the hardest time when these issues come up.

I'm a better parent when my pain is controlled by both curbing my activities and by taking pain medication. My son's best friend's mother recently passed away. She was wheelchair bound and had limited use of her hands for much of his life and yet was one of the best mother's and wives I've ever met, and was a constant inspiration to me. (She and I suspected the boys gravitated towards one another because they had so much in common--including having a disabled parent.)

Children often can't articulate or even confuse their feelings. I think it's really important for them to have someone to talk to other than family. This can be a counselor, or a priest or minister, etc. I really regret I didn't take my son to a therapist when he was a teenager. He kept denying my health issues had any effect on him, now he admits that of course things were traumatic for him, but he did turn to a priest for some informal help at the time without letting me know.

Enjoy them while they're with you, they leave the nest much too soon.

Please please read my thread 'scared, I may have RSD' and let me know what you think. I appreciate you help. I'm not getting help from my dr and don't know what to do. Please explain how the pain is with RSD. My arm usually only hurts when I lift it, but it burns most of the time. Scared!!!

It's hard to give up our old lives. Most of us though don't have to give it up in its entirety and staying involved and building a new life are the best medicines for my condition.

I miss the athletic stuff but at least there are memories and I've still got the soul of an athlete. I can still try to teach muscles to do something well even if it doesn't involve as many muscles or as much exertion.

My crps started in my foot. It was very cold, turned a lovely shade of blue when it was dependent and exposed to air, followed an injury, and hurt for longer than it should have and at a higher intensity than it should have. (I stubbed my toe.) With that said, my symptoms fluctuate- sometimes my foot turns blue, sometimes it burns, sometimes it's swollen. I never know what to expect.

When I first saw my PM, he had me raise my arms above my head- no problem. However, now I have great difficulty raising my arm, reaching out for something, lifting things I would have easily been able to lift prior to my crps. So, yes, my arm only hurts when I lift it. I believe I am developing dystonia because my upper arms react like this, my upper back hurts, my thighs ache, and at times all of the above spasm.

Additionally, my temperature control is completely out of whack. My upper body will be hot and sweaty to the point of embarrassment while my foot is freezing. I'm constantly opening my car windows and turning the car's heater off and on. There is no happy medium.

Hope this helps. Remember everyone is different with this disorder.