The Way RSD affects our family
 

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!!:hug: 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!!:hug: 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.

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 Shandi
 

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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!

sandi
 

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

Hi

I am in the same situation as everyone here. It takes a lot out of a family, but at the same time I'm trying really hard to see how blessed I am that my family is here, they help with everything I can no longer do.

I no longer can get in the vehicle and drive, going shopping, go for my daily 2 mile walks, etc...

For some reason we are all being tested by this "monster" called RSD/CRPS.

I'm not on here much because I have trouble sitting any length of time and my focus....well it's not there like it use to be...:(

This is a great place to share your feelings, many people here have helped me and still do even though I'm not on as much as I once was.

Hang in there, it has helped me to know I am not alone and please know you are not alone.

Smile....:)

First I want to say I'm so sorry for being away so long, I haven't been feeling well at all and Thank you all for the support you all give and It great to have a place to come that understands how I feel. I'm here for you all if you ever need me. Shandi

RSD effecting family life
 

Hi,

This is Kate's husband Steve to tell you how RSD has effected our family life.

Hello, everyone...

What I feel the most is just unending frustration. We never know from one day to the next how Kate will be feeling and it makes it very difficult to make any kind of long-range, or even short-term plans. The things that we do take much longer than they used to simply because Kate's energy level is much lower than it used to be. It is an emotionally draining feeling because there is no end in sight, and it often seems that the whole problem itself is very hard to define.

I often feel that with RSD the doctors are chasing after something that they can't really find, and it drives me crazy. I want them to FIX IT and they don't offer a lot of hope.

Kate can be quite sensitive to touch, sometimes even a light touch can cause pain. This can really limit our closeness, depending on how she is feeling on any particular day. We had to buy a lot of new clothes for her, things that are looser, more comfortable, like sleeveless shirts.

I try to be supportive as much as possible because she often feels sad and frustrated. Sometimes she just wants a hug or needs to have a good cry. I try to be there at those times. I'd like to be around the house more, but I have to work.

I worry about my own health...I'm working to keep up the medical insurance, and I feel the burden all comes down to me; I fear what will happen if I suffer from some health problems.

I guess if I had to summarize everything, it is just not knowing the future and where this is all going that I feel is most troublesome. I am determined to hang in there. I've faced worse, and I'm still here.

Steve, You are a very loving and devoted Husband and My Husband worries about the samething, If He suffered from a health problem also or loses healthcare covarage with the way things are going with our economy. I wish my husband would open up and let some of the stress out like you because I'm worried he will start to become so overwelmed on what to do and what the future holds .Only if He would join the forum and chat with the other spouses that are going through the same. I think about what affect it has on our spouses all the time, Having to adjust their schedule to see how we are feeling before we can plan a day with our family and how long can we stay. That is alot on a person to take in and Thankgoodness for the fine loving people you are to take care and help us or we would have no were to turn. Now Days with all the stress some men give up on and can't take it. Most Husband always know they can fix things when it is broken and that's why my husband ask the same, Why can't it be fixed.

The Way RSD affects our family
 

Shandi: You are very lucky that you are not facing this alone. I have had RSD for over eight years now and I am now a single mom of three grown boys. However they were younger when I first had this ugly dx thrown upon me. I know that someown else said on this post that (I think it was there,children or family) Did not even want to understand what RSD is all about? Well that is what my three boys have done. It just rips my heart out! I thought after they got older this would all change and maybe they would have some different thoughts about what I was going thru. Even my oldest who has my only grandson is the worst one. He will not even call me,I have to see my grandson thru his wife. Shandi-just never let a day go by that you do not hold,love,encouraged and share your dreams with your children! All of us have a secret self that needs to be encouraged and shared with those we love. You will do fine just smile and be your self! Love To Your Family... Breezy55 :circlelove:

Breezy that just rips my heart! I am so lucky my wife is completely understanding. I can't imagine having your oldest child not being there for you. God bless you.

Breezy,
I have two grown children a well, and I know that there is often awkwardness as sometimes they are not sure how to respond or comment, or even talk about the RSD. They are loving and sensitive and I have always been a strong influence in their lives.
I think it's just hard for them to absorb that I have RSD and will not be able to do the things we used to share, (outdoor stuff, hike, etc)

Some friends no longer call because they just don't know what to say..It's almost as though I am a different person to them now...and in some ways I am..
I can't share many of the things we used to do together, along with the spontaneity.

I bring this up as it might be that your sons simply don't know how to put into words how they feel, and therefore don't communicate at all...
Would it help if you wrote them a letter explaining how you feel.....
Take good care,
Hope4thebest xo

Hope4thebest: I did write a letter to my oldest son about all of my feelings. Also why was he not welcoming me into his life? His wife then told me that my letter never did come? I know that my son read the letter than thru it away. He than told his wife that my letter never did come to there house! Also I sent an e-mail to his wife that had everything on it that was on my letter to my son. I sent it to her because my son never opens my e-mail to him! The big ? is I do not know what it is that I ever did wrong to make him so upset with me? I do not think it has anything to do with me having RSD.However how does one know anything when the other will not talk? One of his big time promblems is he has been handed down so much money from my first husband and his grandmother,that he is so into himself. I could go on and on about that side of the family! However it will not change things right now. I am very blessed with many friends! Maybe in time things will changes. Love to all.. Breezy55 :hug:

My family just witnessed a huge meltdown from me today. I haven't been this bad in a long time. It all started when I went with my elderly parents to their doctor appt. It was soooooo cold in the office that instantly both of my legs and my right arm started acting up. I cannot take the cold at all! Then we went shopping I should have gotten a scooter, but I didn't. I pushed myself too hard after the cold waiting room and now tonight I just could not take any kind of stress and just had a major crying meltdown because I hurt so bad.

My mother bought me the greatest blanket today and I am using it as security blanket. My dear hubby went and got it for me out of the car, because he didn't know what to do. It's just so hard to explain to anyone what this evil disorder can feel like. I call it "having 10 different conversations in my body at the same time." That's the only way I can describe it. I'm better now because I have my blankie and my 2 lab dogs are giving me kisses as I type. They seem to understand how I feel and always make me feel better. My family just feels helpless at times like these.Maybe one day they can under stand.

Shandi, I know exactly how you feel. I know it affects my entire family, but I think it’s especially hard on the younger ones. My youngest son, he’s 7, he calls me his ‘best friend’. For being only 7, he’s very aware of my leg/foot being in pain all the time. When he draws pictures in school he draws me either laying down or with a cane in my hands, I guess this bothers me more than it does him. One day he asked me how come I can’t be like other dads?... able to play ball or go to a function at his school (innocently pulling my heart strings...). A few weeks ago he was upset, we have a picture frame hanging on the wall with pictures from Disney World from about 15 years ago, he told me that he won’t be able to go because I can’t go because of my leg(ugh…….). And to top it off, he pointed to one of the Disney pictures & said ‘I want you the be the same’ I lost it…. The ‘mental pain’, a lot of times, is harder to deal with than the physical pain. Enough about me, hope everyone else is having a better day than me. Pain free days to ALL.

Yes helpless that is how my mom feels but she is my hope and I tell her that everyday. I feel so guilty for how my rsd has taken over my moms life. There was a long time and even now where she won't even do with others cause she is so depressed. We both cry often times from my pain. As for the family members here of rsd suffers I know for me my mom has done everything in her power to be there 24/7 and get me relief. She listens and really is my greatest comfort. She is the medicine that works the best. So just being there for the person helps more then anything. You are doing so much really for them just even by being here researching
Cindi I can relate a lot I am in a horrid flare up for awhile again and small comforts really help me feel better but in an odd way safer. I often feel so scared and lost.
Well sending thoughts to everyone