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04/28/2009 11:23 PM

Great Expectations

Posts: 48

[b]I thought I would start this thread because I think it's something we can all relate to and i'm hoping i'm not alone.

Since I became disabled in July 2008 my family and friends are concerned and want to know how I am doing, have I started any new treatments, want to know when I go to the doctor, etc.... I know they are asking because they genuinely care and want me to feel better but I feel a tremendous overwhelming amount of pressure especially from my parents because they don't want to see their daughter suffer and theres nothing they can really do to help and they want it to go away and it won't. I am doing everything I can and should be doing and they too know that. I guess my question is can anyone relate? This has been on my mind for weeks!



04/29/2009 06:58 AM
okieladybug09Posts: 969
Senior Member

Hi Ducky! I can totally relate! I live in Ok and my family is in KS. So I will call my parents the day before my dr appts and remind them who I am seeing and when then I always call them and fill them in. My Dad has taken a real hands on approach with me since I opted in for the SCS. My Mom does her homework online about RSD and doesnt think twice about calling me or emailing me with something she found. My brothers and sister on the other hand, they ask how I am doing and I learned to say "hanging in there" cause if I was to tell them the truth it would blow them away. I get irritated alot when I go out in the community or to church and people look at me and have that "pity" look, and they ask how I am doing. I usually tell them I am doing fantastic and leave it at that and go on my merry way, cussing inside my head telling them what I really think! lol


04/29/2009 09:37 AM

I can relate a bit, I originally moved back in with my mom after my divorce to help her out, she's 83 and needs some help and then I got this disease and not able to do most things that I was. I know my mom really cares but she is having a hard time seeing daughter go through a disease where this no cure and she doesn't know where to help, and I don't either. To make it worse she doesn't really understand things the same anymore and it's hard on both of us. I know she wants to help but how can she when even I don't know where to begin. At the same time I don't always want to a burden to her, I should be helping her out with her age not the other way around. I'm only 46 I just came to terms with being beat all the time in my marriage and was just starting to date again, trusting men is something I'll probably never do again but I was starting to trust the boy friend when this began and he left me because of it. One of the hardest parts of this is when someone asks how you are you don't always want to say oh I'm in so much pain and have then run away

Post edited by: melisA, at: 04/29/2009 09:39 AM

04/29/2009 10:10 AM

I'm sorry you guys for a moment find it pressure in anyway. I can't help but to remind you of the time when no one will be there to care.

I'm glad your not dealing with that pressure. RSD came into my life and the crap hit the fan. Before I even got the diagnosis, I lost my only sister. And on the day of nerve block #2 I lost my mom. And not a year later, My dad. I do have a big brother roamin' around out there somewhere. I have a husband that has survived with me so far and a friend of 20 yrs.

That's all! I have a son off living his life and I'm proud as punch, he has two sons. I hope that I never see the day he has to take care of me. So as bad as it is to have to keep loved ones aprized of things, imagine them all gone.

04/29/2009 10:42 AM

Sort of funny with RSD in how it seems we all have similarities but how no one seems to be affected in exactly the same way. I can see how they changed the name is Complex

04/29/2009 11:11 AM

I'm not sure what you meant by that?

04/29/2009 11:59 AM

It seems that no two people have this disease with the same symptoms how it may appear the same but someone could be worse than someone else some one may have effects that someone else doesn't

Post edited by: melisA, at: 04/29/2009 12:01 PM

04/29/2009 03:08 PM
Posts: 2771
Senior Member

Jen, I can understand what you are saying. You are lucky to have people who care about you. My story: When I was going through PT, people kept asking "well, can you lose the crutches yet?" Then, it was "can you walk normal yet". etc... Makes you kind of feel like they are pushing you when they really aren't.

04/29/2009 03:18 PM

Lazy1 - A person with this is lucky if they still have people wanting to stick around. Most of my friends have left me because of this. My other friends I have when I lived in England still want me to come back but not just England but Europe in general is more friendly towards the disabled.

04/29/2009 03:34 PM
Posts: 2023
VIP Member
I'm an Advocate

Evening everyone

The only expectations my husband has of me anymore is to be well and sleep well. We don't have family locally. My family is in Georgia. His parents are deceased, as well is my natural father.

Our daughters were 11 and 12 when I was first injured and our son was 3. While our daughters spent their teen age years full of hope and the return to normalcy, with high expectations, within a few years that was gone. Our son has known no other life. He's had expectations of some sort, wishes and hopes more so, but even their lives have been a long hard road.

I did lose my best friend of over 20 years as a result of this illness. I came to terms with accepting it because I couldn't run around anymore, shop, etc... that friendship faded. My friend always believed I could do more than I could and put me down for sleeping too much. She always told me that she knew people with disabilities that could work and that hurt because I wanted to work. If we ever became back into each others lives, it would never be the same.

I lost my 30's, she lost a great friend, but I know that if she called me and truly needed me, I would be there. I just wish she was there for me. Outside my immediate family, she's all I had offline.

Well... that caused a teary moment.

All better now. smiles

Wishing you all pain eased days and nights,


Post edited by: rsdcrpsfire, at: 04/29/2009 03:36 PM

Post edited by: rsdcrpsfire, at: 04/29/2009 03:37 PM


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