I went to my son's 5th grade graduation and It hit me so hard to think back and realize all the school trips and school activities I have missed because of the pain with RSD, I just broke down and cried. Now he is growing up so fast and I can never go back to have the memories and nor will he having his mother by his side when other parents was always involved in everything with their child. I beat myself up about this and have tried to explain to my son why I wasn't there and I was so sorry and he replies it's ok mom , When I know it hurt him. I hope I will get a chance one day to try to make it up to him and hope he doesn't remember when he is older my mom never went any were with him. We have to miss out on so much in our lives living with RSD and it's even worse when others doesn't understand the pain with RSD and how it affects our lives. Shandi

Hi Shandi and welcome to this compassionate group that can understand what you just said. I've had RSD 13 years and my husband and daughter definetly have expressed their loss and sadness too. We, that have RSD, suffer in a lot of different way, but things change for our families and friends too.
Unless you are living it or living in it, it's difficult for others to truly comprehend the emotional pain and loss. I've seen a neurologist that is also a psychiatrist for the last 5 years and he has truly helped me in adjusting to this ''new life' and make the best of it.
This forum has been a huge part of getting thru this day by day. Hope you stay with us and receive the encouragement too. Tell us a little about yourself under 'introductions' We would love to get to know you. Your friend, loretta

Hi. I am so sorry. I don't have kids but my condition has basically taken such a toll on my moms life. I feel so bad and guilty but am trying to just stay in the moment and hope for better times because that is all she wants for me. I know it is hard since your child is young but hopefully soon you will have better times and your son will just be so happy you are feeling better. Maybe and I know hard but think of things you can do with him and try to focus on that. It is the little things that kids remember too. My mom growng up did not have rsd but other health condition. Anyhow I think part of my worry is that I was kept in the dark out of concern that I could not understand or worry but in reality I think explaining would have helped. I feel my mom is the best and I can remember everything she has done for me and trust me your son will too. Wishing better times ahead.

Hello Shandi,
Welcome to NT. This is a wonderful group. You are not alone with your concerns over your son. We have all probably been there. Relax and look around and read some threads.

My kids are grown 24 and 21. I have had RSD for 9 years. My daughter expressed herself more than my son on how if affected her. CRPS is hard on us and we have to change the way we do things and not do some things at all. We have to ask ourself how much do we want to pay in pain for what we do? Somethings are worth the pain and some are not.
Your son is young and I know it bothers you more than him about what you have missed. As mothers we are born to nuture. When we feel that we haven't it's hard on us. You can still show your love in other ways. If he has a favorite show or video game watch it with him or play the game with him every now and then. Don't hover just let him know you are interested in what he is interested in. When school starts next year stay in touch with what is going on ask him how his day went. I know from experience with my son he may act like I'm bothering him but I asked anyways. My son is a quiet kid who likes cars. He liked to draw and I would always stop what I was doing and go over his drawing with him when he asked.
You may not be able to do field trips or volunteer in the classroom like you want but you can show you care in other ways.
It's OK to tell him on some days you will feel great and be able to do things and other days you won't feel good and it will be hard to get out of bed. But, that doesn't mean you don't love him any less. Give him a hug every now and then to afirm your love for him. Bake his favorite cookie if you feel up to it. Even if his favortie movie or show isn't yours take the time to sit in the room with him while he watches it.
RSD/CRPS changes enough in our lives don't allow it to change what you can control. Don't allow it to define who you are as a person. PM me if you want to talk.
Take care,
Sherrie

Hi Shandy,

I'm so sorry to hear that you are having to deal with all of this right now!! I can't imagine how hard it must be to not be able to do all the things you want to with your child because of RSD and pain - it must be the hardest thing in the World!

Please try and not beat yourself up about it too much (easy for me to say, I know). Your son knows that you care and love him and want to do all of those things with him and i'm sure he is so happy to have you as his mom and proud that you went to his graduation event with everything else you have going off right now! You are there for him whenever he needs to talk and that is the most important thing!

I understand completely what you mean about RSD affecting the whole family. My doctor always said that RSD and any illness affects more than the sufferer and it is soo true!! I was 12 years old when I got RSD (now 14) and it is SO hard not being able to go out with my friends and do most normal things because of my RSD.

My illness has caused so much grief in my family and not many people understand what I go through on a daily basis. I'm really lucky to have my mum support me but not many other people in my family understand what RSD is, despite how much we tell them.

Have you ever thought about having like a 'movie night' or something with your soon once a week where you do something fun that you can do? It might be an idea to organise a day a week where you do something fun together that you are able to do. Even if it is just watching a movie whilst eating a takeaway, you get to spend some quality time with your son! I know it's not the same as going out and doing activities but it's an idea.

I really hope you are feeling better today and i'm so sorry you are having to deal with all of this!! Like I said though, your son KNOWS you care about him and that is the most important thing!!

Take care of yourself and know you are in my thoughts and prayers! If you ever need someone to talk to, I am here for you!

Alison.

Welcome here, Shandi.

You will love your children, no matter what;meaning, you don't need to feel guilty because you aren't able to do field trips..you will attend the most important ones, like school plays and graduation!

Your children will understand;further, what you are teaching your children from RSD in the family is: patience, compassion, being a good person, strength, independence. I could go on and on,however, I am sure you get my drift.

I have a 21 yr old son; RSD entered the family about 2 yrs and 3 months ago. I did all the field trips that you feel guilty that you can't attend. I was the homeroom mom through 6th grade. Believe me, your children will go through developmental stages where you won't even know WHO this child is..so don't fret.

My son turned out to be a good person.He does bring up to me that I did everything for him, and now he has to learn to do things on his own. He has lived on his own for 1 1/2 yrs. See, can't win,LOL!

Hello Shandie,
I really hope things are going better for you. I know exactly what you are going through. I have a 13 yr old daughter. There are so many things that I can no longer do with her and on top of things she is 13 and teenagers will be teenagers. One thing you have to remember you are still able to go to some of his school functions and that really means a lot to a child as they get older. Trust me I know. My mom was not there for us at all when I was younger nor was my father. To this day my parents aren't there for me. I have a hubby and a daughter that don't care what i am going through they don't even want to learn the basics. I would love to be inside there heads just to know how they REALLY feel. Sometimes my daughter don't even want me around. She is embarrassed cuz of me. I don't think my hubby really likes what is going on either. It is really tough, but we are strong no matter what and we can make it through this monster. We can't let this monster win no matter how tough it gets. Its a bad thing to deal with but this is the way God wanted things even if we don't understand. We can only take one day at a time and deal with things as they come not what lies ahead. I am still trying to learn that and I am getting better at it, but remember you need to keep your stress down as well because that makes me feel worse. Maybe that is not what happens to you but try to take care and take one day at a time. One last thing enjoy your son as much as you can and don't let anything take away your happiness. You deserve to be happy and take everyday as it comes and every minute of your day to think happy thoughts when possible while spending the time you can with your son. You deserve the best like we all do.

Sincerely,
Tracy Tracy(screwballpookie)

P.S. Forgot to let you know that i have had rsd for 7 years. So i know what it is like. Take care and be happy!

hi sandi
its very hard on our famillys,,,bewteen being short witheveryone because of the stress,,,the meds work on me as well,exsp the cortisteroids,,hand in there,,Bobber

Welcome Shandi,
You have come to the right place for support and understanding. We have all experienced the loss of participating with our families, co-workers and friends. Remember, you may be unable to physically participate but you are the same person inside (heart and soul) that you were before this awful disease set in. Don't forget who you are!

Educate your family and friends so they can understand what you are going through. Even the younger ones will understand to some degree and want to help. It will not only help you get stronger but it will help them be stronger and have more understanding. Find creative ways to participate in activities and keep a postive outlook.

My children are grown but they have researched this disease and have really tried to get a handle on what it is and does to me. I can't just jump in the car for a weekend visit anymore, can't shop and walk the dogs with them anymore but I can call them often and share their lives with them. They now email me more and send lots of pictures to make sure I am not left out.

My heart goes out to you and others that are struggling with this terrible monster. I know it is easy to throw out suggestions and words of encouragement when you are the one dealing with your particular situation, but know that your children love you unconditionally and will adapt to what you create around them. Create a positive circle of love and you will be blessed. Feel free to PM me anytime if you just need to talk.

Your new friend