[Coerley]

I need some advice. I have RSD in both my hands but it is worse in the one. It is so bad that I cannot get my own food or beverages. Even though the pain is subsiding a bit, I still do not have the strength nor relief enough to prepare food or drinks for myself. How do I stop myself from feeling like a burden to my family? I hate having to ask for this and that every 10 minutes. I have to make sure I drink a lot of fluids due to the dry mouth from my meds, and it makes it that much harder. I don't know what to do. I need help not feeling like a burden. How do I get past that, what can I do to help myself. I am not depressed which I am greatful for, but I can't get past the "I am a burden on my family" stage. It is almost 8 years and I am still stuck in this stage.

[screwballpookie]

Sue,
I think you have a very good question because I feel like a burden to my family and I also feel like our financial situation is my fault. I keep dwelling on the If I never got hurt at work this never would have happened. I feel like I am the reason for almost all my family problems. I am not sure that I have advice right now. The only thing I can ask you is are you seeing a therapist or counselor? If not you should. I have had rsd for almost 7 years and am going through some more changes with my body right now meaning that I am trying to find out since I have started with rsd in my left hand why my right hand is giving me trouble as well as my knees, calves and feet. I am very scared to hear the answer. I was referred from my pain doc to see an orthopedic specialist which I did. The ortho thinks that there is a good chance that it is rsd but said he couldn't give me the final diagnosis because that is not in his field so he highly recommends that I see a neurosurgeon asap. He got his dictation over to my pain doc and now I am waiting for my pain doc to refer me over to a neurosurgeon to verify what is really going on. I just hope it doesn't take them as long to diagnose it as it did with my left hand. It took them 3 years to finally diagnose what I had. I don't mean to ramble on but my advice is to continue talking on here as well as seeing a therapist . I am seeing a therapist so I can talk because I have so much that I need to get out that it does me some good to talk.

Sincerely,
Tracy(Screwballpookie)

[Coerley]

I just wanted to say thanks for the advice. I really appreciate it and am glad I am not the only one out there with the same feelings.

[llrn7470]

I'm not sure that I can give advice as everyone's family situation and relationships are different, but you and I are in the same boat sister! When we had our second child, we decided that my husband would stay at home (he is a paramedic) and I would work like a fiend (I am an RN) since he makes about 1/3 of my salary. This was working, tight, but working. Know my elective knee surgery has blossomed into RSD. Now we live on my STD, Aflac, and his work. The problem is that I am like another child myself. I fall, can't walk without crutches, so I cannot carry anything that I want to someplace else, and cannot do stairs (laundry). It's hellish. We actually have to find a "babysitter" while he works the hours that he can because the meds I am on make me incredibly forgetful, sleepy, and unstable. My mother drives from an hour away (she's 75 and it snows here) or my mother-in-law does the weekends. It's a horrible rut to be in. Again, I promised no advice, but know that this happens to everyone that has some kind of incapcitating thing happen. I still cry when I look at my wedding pictures and tell my husband "This isn't what you signed up for, is it?" But he feels very differently. And I'll bet your family does too. Show them that your are trying with any therapy, PT, etc, and focus on anything you can do. The only way they will feel your are a burden is if your are trying to the best of your ability to get better. Even if it's been 8 years, don't give up! Get a big old insulated straw cup and do that PT. This may be more your feeling than theirs. Sending hugs
Lori Lee

[Coerley]

Originally Posted by llrn7470

I'm not sure that I can give advice as everyone's family situation and relationships are different, but you and I are in the same boat sister! When we had our second child, we decided that my husband would stay at home (he is a paramedic) and I would work like a fiend (I am an RN) since he makes about 1/3 of my salary. This was working, tight, but working. Know my elective knee surgery has blossomed into RSD. Now we live on my STD, Aflac, and his work. The problem is that I am like another child myself. I fall, can't walk without crutches, so I cannot carry anything that I want to someplace else, and cannot do stairs (laundry). It's hellish. We actually have to find a "babysitter" while he works the hours that he can because the meds I am on make me incredibly forgetful, sleepy, and unstable. My mother drives from an hour away (she's 75 and it snows here) or my mother-in-law does the weekends. It's a horrible rut to be in. Again, I promised no advice, but know that this happens to everyone that has some kind of incapcitating thing happen. I still cry when I look at my wedding pictures and tell my husband "This isn't what you signed up for, is it?" But he feels very differently. And I'll bet your family does too. Show them that your are trying with any therapy, PT, etc, and focus on anything you can do. The only way they will feel your are a burden is if your are trying to the best of your ability to get better. Even if it's been 8 years, don't give up! Get a big old insulated straw cup and do that PT. This may be more your feeling than theirs. Sending hugs
Lori Lee

Thanks Lori Lee, I needed to hear that. Sue

[Rita]

Sue, my sweety feels the same way, and speaking as someone on the other end, we do not feel that our RSD sweethearts are burdens. I tell Reed constantly that I want to do things for him.. if it were me, he would take care of me and help me too. No, it isn't what I thought it would be, but it's not for him either. That's life, and we take as it comes. I feel like the best thing I can do for him is to support him, love him, push him to not give up, and yes, kick his butt every now and then when he gets into a funk. Please don't feel as if you're a burden, you are still the same person , and your family loves you. I tell Reed that he's just a little "higher maintenance" than I expected. That always gets a little laugh from him. For what it's worth, he's still my Superman, and always will be..regardless of what he can or can't do physically.

[allentgamer]

This is one subject that I really struggled with. I feel like I have dragged my family down with me. It has been a long hard road to travel.

One day I was letting my wife in on my unspoken feelings, and she tells me that if anyone was gonna leave, they would have already left, and you would do the same for me I know you would.

She was totally right, I would. It took the weight off me some, and as what she said sunk in, it gave me a feeling of security I hadnt felt in a loooong time.

I still know that if I was healthy things would be different, but I dont torture myself with these thoughts anymore because I am secure in the knowledge that im not alone.

I have my family, and I have my NT family. How could I ever go wrong

[ali12]

I totally understand what you are saying as I have gone (and still are) through this myself also.

I was 12 years old when I developed RSD in my left leg and right arm and I really felt like I was a burden to my mum. At that point, I was practically wheelchair bound and my mum had to carry me everywhere. I knew my mum cared about me and would do anything for me but I still felt that somehow, I was holding her back and she wasn't able to do all of the things that she wanted to do like go to work, go out and have some fun etc. I have spoken to my mum about this several times and she says that non of this is my fault - it's not my fault i'm ill and that I can't do some of the things that normal teenagers would do. She reassured me that everything was going to be OK and that if she didn't care about me - she wouldn't be looking after me as a caregiver.

One thing that has really helped my mum was talking to the doctors and also to a Psychologist. The Psychologist really explained things well to her and made her understand how I am feeling etc - that may be something to look into if you haven't already done so.

I wish you the very best and hope that you get things sorted soon - please know though that if your family didn't care about you, they wouldn't be looking after you right now.

Alison.

[frogga]

Hi

I can fully relate, I am fully dependent for everything - I have to be fed, have drinks held for me, dressed, hoisted, taken to the toilet, you know the whole lot.... everything you can think of really... even scratching my face or turning the TV on. I constantly feel a burden and it's been really tough learning to deal with it...

I have a routine of everything that has to be done each day and I try and ask my mum/ boyfriend/ friends/ carers at each meal time if there is something I want them to do in the next couple of hours - like get me into bed and put my laptop on so I can do some work, or get me in my wheelchair so we can go to the shops etc. There are things called possum bags you can buy which carry a litre (or 2) of water which you wear on your back/ a chair which have a tube you can drink from - I used to have one on the back of my wheelchair when I could move my head and mouth. That might help.. have you had an occupational therapist assessment? that might help as well.

Another thing. It is NOT your fault you got this illness - and it's not fair.. but people love you and they might get irritated with having to help out but they love you and don't mind doing it - I know that I can get really upset when my sister gets cross because I need to go to the toilet or need something but I know deep down that she loves me and helps me because I need it .In return I try and do what I can - whether it's trying to remind people to put the rubbish out or just being emotional support to people when they are having a hard time - it just makes me feel like I'm giving something back.

I'm sorry you feel such a burden- but you aren't.. people love you and want to help you but I know what it feels like. My boyfriend says that though dating a girl whose a quad with RSD is exhausting it's more than made up for it by the good times...

Sorry, wish I could help more.. just wanted to say I understand..

all my love

Rosie xxxxxxxxxxx

[Coerley]

I would just like to state that I am so very happy that I came across this website. Since joining, I feel so different, thanks to all of you. I don't know anyone personally that has RSD, but I have heard of one case in my area. Now, through talking more to my co-workers, I found out that one of the ladies that I work with has a daughter that has RSD. She doctors with Dr. Schwartzman in Philly. I was referred to him a year ago, but it was then a two year wait. Plus, I was tired of hearing "there is nothing I can do for you" from my doctors. Anyway, since joining, I am not as quiet about my situation. You all helped me not to be ashamed of not being able to do things. Thank you all so very much and have a wonderful holiday. You all deserve it.