Hi My RSD Friends,
I had to tell ya'll this one to make everyone laugh. I have a home health aid that talks non-stop for four hours three times each week. I think she feels she must entertain me or something. Two weeks ago, she got down on the floor and started barking like a dog at my dog. Last week, she started jumping around like a kangaroo (with bouncy noises too). She comes in this morning (as each morning) and flings open the door and screams my name, then running down the hall does the same thing again until she winds up next to my bedside talking loudly. I looked at her and said "Please stop talking so loudly." She replied to me with a nasty look "Well I can talk louder." I said it is a bad pain day and I can't handle the noise. She got the papers she needed and left. Of course the flare started as soon as she came screaming in the door...I guess thinking she is entertaining me. She came back after about an hour and I asked her when she comes in to please not talk so loud and explained how I had to have my son in the past lower his voice. SHe got mad and started making funny faces at me and said she is a social butterfly and loves to come in and get people up and moving. She then proceeded to tell me I was just "grumpy" and that I should be around lively people each day." I said I am each day. Well, my pain shot up and I was sooo annoyed. She is supposed to be my caretaker and saying things like that is just so not compassionate. I said "Well, if you just walked a day in my shoes you would be the same way." She approached me and said "Ok I'll do it now." I said to her that sound and vibrations really make my pain higher and that I don't take any medicine now and I need her not to come in and be quiet. The other day I even made a comment about me liking silence. She said "Well, you can't work and not talk." I said "Yes, you can." She put sheets on my bed today. I left them exactly the order to put them in. All she had to do was take old ones off bed and put new ones on. She was wrestling with bed/sheets for about an hour and I went to see if she was ok. She got other sheets out I didn't leave for her. I went to lie down after she left and all the sheets were backwards or upside down. I had to re-do all the sheets so they are comfortable for me when my body is cold and then burning up later in the night. I had to go and cleanup my room after she left. She has already told me she has ADHD X3! I told her I thought so as my son has it and I knew the signs. SO, I am always careful to give her good directions...problem is she can't follow any directions and just can't listen.

I printed up "The Spoon Theory" to give her to help her understand how it all works and I printed some stuff about allodynia too that she can read.

After she left, I started to get real annoyed with her comment about me just being grumpy. I am probably the most upbeat person around and have been told that by medical professionals and people all the time. Heck, I could be grumpy lol if she wants to see what it is like. Only kidding. As much pain as we go through each day why are people continually insensitive to our needs? I try to educate people more about rsd when things happen like this aid. Does anyone have any suggestions for when people say and do stupid things that are so insensitive? Just like to get everyone's perspective on this one. I've had rsd for six years now and I seem this last year or so to get so annoyed with people when they say dumb things. I feel like I don't have the patience for people any more. Oh, and this aid is the best I've had yet. haha. The other ones either stole from me, didn't want to work, burned my food and almost burned my house down, or were just plain clueless. I thought everyone would get a laugh at how my day went today.
kathy d

P.S. Hey Jimbo...maybe I need a dancing turkey and dancing chilli pepper to make me feel special today:.)

I text mine that I need to nap and hide when I'm flaring...

I'd interview some replacements if I were you though...

Kathy,

I know she doesn't realize how her actions create our reactions, but I think she is in need of definite rsd training. Supposibly it is a requirement here in Delaware for health care workers, but none of the nurses I know knew nothing about it.
If I was you I would call her employer and ask if there is any way for them to have an "inservice" for their employees on RSD.
They will usually do it, and it is a good way for all their staff to be educated on RSD. Good luck and keep being grumpy. lol

Someone with ADD might just not be a good fit.

My cleaning person is bipolar. She's kind of exhausting for me to deal with because she's ALWAYS manic. But she does seem to do twice as much work in half the time (she's also twice as expensive) so while not a perfect fit, I'm grateful.

She treats the time in my home like I'm a therapist--but then I seem to attract that type of attention from some... Some weeks I'm just not up to the noise of cleaning or even her energy level, and my hiding away seems to work because she's capable of managing everything without me.

It is a weird situation--to feel dependent on someone for things we use to take for granted...

Even with friends and family it is uncomfortable when someone else's normal behavior causes me pain. It is very tempting to become housebound and isolated. I am able to reduce my extreme hypersensitivity to noise, sound and vibrations with a combo of medication, diet and coping strategies. When loud voices make me wince--it's a signal for me to break out the breakthrough!

Does anyone know how common it is for RSD patients to have their pain exacerbated by hypersensitivity to stimuli?

Thanks all for your suggestions. Lit Love said "Does anyone know how common it is for RSD patients to have their pain exacerbated by hypersensitivity to stimuli?" I think you hit the nail on the head so to speak. I have extreme sensitivity to water, air, noise, you name it. I think that is most of the problem now. I was on Mexiletine which is a heart medication that works like Lidocaine and never had the burning I have now nor the worsening skin sensitivity. I was given Mexiletine after my lidocaine infusion but haven't taken it in over a year now.

Thanks Litlove for letting me know I am not the only one that goes through this with their aids. By the time she leaves I am a basket of mush and she is clueless how her behavior causes me so much pain.

I had to laugh tonight because my son (as well as his friend) met her for the first time yesterday and he told me tonight that she is definately on something...whether pills or something else. I had to laugh because I thought so but I try to give people the benefit of the doubt and thought maybe she was insecure and I know she has ADHD too. He told me him and his friend talked about it when they left. It was funny because I noticed after they came in she got real quiet and kept to herself when they were around. It was real strange for her to act that way as she usually continues talking to herself or just out loud and even answers herself and laughs at what she says as if someone else is in the room with her. He told me not to talk to her and for me to tell him things to do this week when he is here and he will tell her to do them. He wants to see how she reacts. He is funny.

I have tried to hide in my bedroom and close the door and tell her I have phone calls to make and she winds up knocking and coming in to bug me. Nothing stops her. Believe me I absolutely HATE being dependent on people. I used to be extremely independent and did everything on my own and now...it is terrible.

It is funny you mention being homebound and isolated because lately that is exactly how I feel! Is it "normal" for me to be feeling like this or will it go away. Seems like the older I get and the longer I have rsd I am getting more sensitive to sounds and just don't want additional pain (I have enough to deal with). I am also tired of defending myself to everyone. I just do not feel like interacting with anyone as I just don't have the energy to do so. I do have a wonderful best friend that lives about 4 hours away and she has kept me sane all these years and I hope someday to move closer to her and her family and adopt them;.)

I wish I could come up with a one-liner when people say dumb things to me that could be polite but would shut them up and let them know they made a stupid comments...any ideas???
Thanks my friends,
kathy d

I know exactly how you feel about the sensitivty to sounds and such, but I really don't have any advice except report her to the agency that you use. You don't have to be mean, just let them know that she doesn't know how to handle your disorder. I can honestly say that you've handled it way better than I could!

I know in CA, you're allowed to hire an aid through your own search and then the state pays them, so you're not just limited to those already employed by an agency. In this economy, people that would not normally be open to this type of work, might be thrilled for the opportunity. Your state rules might not allow for this, though...

I think your son acting as a buffer is a great final test. The fact that she's the lesser of evils that you've dealt with, is more than a little scary.

Oh--one last hint--headphones and an audio book or calming music, or even ear plugs and a locked door, with a note "Too ill to see you today, please do not disturb." If she won't respect your wishes in your own home...

Hi Lit Love and All,
Thanks for your suggestions to my problem. I appreciate it. LitloveI am in the process for months actually of trying to find someone I know to help me and the state will pay for it but I don't really know anyone so it has been taking some time to do so.

My son was here today when she was here and she got very quiet again (I was happy and told him to stay around if he could when she was here haha). I think she is leary of anyone else around as if it is only me she can act crazy because who would believe she is doing the things she is doing. But with him here she knows she has to walk the line. Who knows. He said today again that she is crazy lol.

I like the headphones idea but I know she would still try to talk to me...nothing stops her. I have even locked myself in my bedroom and told her I needed to make phone calls and she only interupted me four times!! I did talk to her as I mentioned above. I told her I was offended by what she said on Friday and her reply was that she didn't mean it like that. Come on when you call someone grumpy that sums it up. I said I thought she knew about rsd from what I told her but that I was going to educate her. I told her what you may perceive maybe as grumpy is actually someone in extreme pain. I told her she can be a social butterfly all she wants and that is great for her but she has to take into account each clients needs and not hers. I gave her the spoon theory to read as well as some ideas on how we feel (such as being doused with gasoline and letting it burn 24/7). The greatest thing was when she came in the landscapers were cleaning up the leaves in the area and they were using those blowers and had big lawnmowers and she came in complaining how loud they were and she could not stand it. Perfect I thought. When I talked to her I used that as an example of how I feel ALL THE TIME with the sound and vibrations. It worked perfectly. I think she got the idea but we shall see haha. Just wanted to update you all on the day.
Take care,
kathy d

Kathy, I thought about you the other day and I've been meaning to post what happened at my doc appointment Wed.

My doc noticed that I looked much better than when he normally sees me. And it took me a minute to figure out the difference... He saw me within 5 or ten minutes of when I walked in the door, when it's much more common for it to take between 45-60 minutes. He responded that he was surprised that just my sitting escalated my pain. So, I explained about how the environment and the people in the waiting room, were the cause and went into detail. His waiting room is not loud or crowded, either. I know I've described that I have these issues to him in the past, but for him to see the cause and effect (or I guess lack there of on this occasion) was eye opening.

We then discussed his behaviors around me that effect my pain levels-and he said it was a good reminder to him that he needs to try to be more gentle. (He already wasn't bad.) But, I haven't ever attempted to "train" him either.

There are some people that are very "quiet" in their movements and speak softly--these are the type of people that are the easiest for me to be around physically. There are all kinds of little habits most people have that escalate my pain. If I'm going to be around someone on a regular basis, I inevitably have to try and get them to stop doing some perfectly "normal" habits. This is an incredibly awkward thing, and there have been times, I felt like I sounded like I was scolding a fidgety child...

I wouldn't have ANY problem letting her know whats what.
YOU are not being paid to care one whit how she feels,what she likes,how she wants things to be
SHE IS being paid to care how you feel,what you want, and what you like.
It is YOUR house and you can be just as cranky,demanding,bitty as you like thats your right and YOU are the customer!
She is not doing you a favor. She is being paid. She is also a dime a dozen. If she doesn't want to do as you say, then she can hit the road! I don't care if your writing the check or if it's paid on your behafe. You are the boss, if she doesn't defer to you, she needs to go.I can understand telling her once. but only once.
I say demand your right to customer service! Demand your wishes be met! Proclaim it is your home and your rules and what you say goes!
If the company doesnt want to cater to your needs there is always another one willing to.
I guess I am the grumpy one
I am sorry, I wont tolerate any defiance from some twit in my own home.