Me Being Grumpy?????
 

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:.) :hug:

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 :hissyfit::yahoo:
I am sorry, I wont tolerate any defiance from some twit in my own home.

Hi Trkdvr!
You are soooo funny and made me laugg. Thanks. I needed that. :D
You are totally right in everything you said. That is exactly how I feel. This aid is about my sixth one since Jan this year and believe it or not she is the best one I had. Scary I know lol.

I have had some aids that are very quiet which I like but I have been in bad situations where I could barely move off the bed and one aid was ticked off because I called her boss as she took 1 1/2 hours for lunch and didn't want to work. I found out she was only to have 15 min break!! She started going off and I was a bit scared of her so I stayed in the other room and when she left about 20 mins later I locked the door and called her boss telling her never to send her back to me again. I have been through the ringer with aids. Most don't want to work. And I am here by myself a large majority of the time and I go out to take my dog right out front and I worry that some may try to harm me or take advantage of me somehow. I never thought at 40ish I would have to worry about someone harming me but I don't trust people at all.

You will be very proud of me today for what I did. She came in and kept telling me she had to get blood drawn for a blood test for TB or something (I wasn't even listening). She kept talking and talking so much that I was about to tell her to shut up (which I don't like to say). I was putting together a small Christmas tree and was absorbed in that and ignoring her. She would not stop. So I looked at her sitting about 4 feet from me and said "I'll bet you can't be quiet for 1 minute!" I think she was shocked and I said I need it quiet. She said well kathy I am sorry but I have to get blood drawn and I get nervous. I said you will be fine (Two days ago I got stuck six times for an iv and lived). She needs to stop whinning at me. She did shut up a bit then started again. I looked at her and said "The minute is not up yet." lol. She is quiet about two mins then starts with something stupid again. She said she wanted to leave early and I was like Yeah! I just don't get some people. She said she was an aid years ago but she just doesn't get rsd at all. I am going to do like you said and just look at her and tell her to be quiet I need it silent.

Good news is that I should have another aid hopefully within about a month. This person is a friend of a friend and is a bit quiet and does her work. I can't wait.

I even knocked on my new neighbors door above my condo and asked if they could keep the little girl from jumping loudly on my ceiling as I have a pain disease. So far so good as today there was no jumping. I was told the girl takes gymnastic classes. I said great but go to class and do it haha.
Thanks for everyone's help and suggestions. It is nice to know that I am not the only one going through this mess.
kathy d
:grouphug:

Hi All from your "grumpy" RSD friend. Just wanted to give ya'll the update...my aid walked out today and quit! Alleluia! My home aid quit today.She came in my home today late and in a bad mood. She left after getting a phone call and came back even madder. I asked
her if she had my grocery card and she said no. I told her I never got it on Monday. She started swearing on her mother's grave that she gave it to me. I said ok but I never got it. I always keep it with my other cards and I give her an envelope to put everything in so she doesn't loose it. She gave me the envelope but not the other card. I thought no biggie. I'll just get her to get me another one next time she goes. She got mad at me, cried, and stormed out of my bedroom yelling "I quit." I said ok and let her go about leaving. She came in my living room carrying on saying that I make her do to many things at once and she can't do it anymore. So I said "Well, I think it would be a good idea for you to just leave" (Since she was supposed to escort me to a doctor appt). She was like a wild banshee and kept flying back and forth across the room saying she didn't know what she was doing or saying and that she would lose her job over this. I told her to calm down and call her husband to make sure he could pick her up. She said she did. I told her it has not been easy for me. I thought she was going to have a nervous breakdown. She then proceeded to tell me that they had so many other people here and she was the last one. I asked her what she meant by that and she did not reply (I think she meant that there was something wrong with me lol). I thought it not even important for me to go into anything with her as she was not in a good frame of mind and I had to go to the doctor. I felt bad for her but at same time she is supposed to help me. I don't need all the drama and stress. She has progressively gotten worse each week. Crazy huh? I was happy she was gone and now can concentrate on a friend of a friend that is to work for me. This aid thing is so stressful. What we go through in one day is amazing. This will all be in my forthcoming book ;.) Thanks for listening to me vent.
kathyd

Kathy,
I agree with trkdvr.

You are tolerating too much, in your own home, from someone who is supposed to be helping you!
I hope you deal with it, without it 'dealing with you'!

Be well!

Pete
asb

Thanks Pete. I agree too. Problem is...what help is out there is really bad and this last aid was the best out of all of them (which doesn't say much about her) :.( When you are in the position that I am in I can't be too picky but it sure is stressful). I understand from being around people with ADHD that not everyone learns things at the same level so I was trying to take that into consideration. I am working on getting a friend of a friend to help me now. I hate to be dependent on anyone so rsd has been really hard for me to have to ask for help.

Update-----About 6:30 tonight my aid called me calm and quiet (for the first
time ever haha) and said she was sorry that she had a migraine earlier (I've
had migraines and never acted like that) and the music was too loud
(there was no music on at my house at all) and she had talked to her
boss about what happened today. She said she wanted to come back here
on Friday. I told her no. Then she said "Well do you want me to come back Wed and Fridays only?" I told her no that I would need to make a few phone calls and not to come back here and her boss would call her about it. She said well you didn't even call the boss. I said that I was not home all day (she knew I was at the doctors because she was supposed to go with me). Amazing how crazy some people are these days. I am hoping she has a drug problem as I cannot believe someone could be as crazy as this woman was. Thanks for all your help.
kathyd

Kathy,
I'm so, so sorry for what you are going through!
As you know, however, we must keep on being strong and push through these people who just don't get it.
It seems to me, that perhaps you are helping your 'aid', more than she's helping you?!!

Maybe she does some physical things (don't put up with them being done wrong), and you are helping her mentally? Does that sound right?

Either way, I know that You are a positive force in her life, and the Universe!
(not in a freaky way), haha.
But, good for you, for sticking' around!

Best Wishes!

Pete
asb

Hi Pete,
I agree with you saying I am helping her more than she is helping me! I don't know what it is (the universe or something) but I always get people attracted to me that need help. I can go into a ladies' room and have women come up to me and start conversations about things I don't want to know.

It may be heredity because we used to call my mother "The Mayor of Philadelphia" because it seemed she knew everyone lol. Maybe they feel safe or like you said maybe I help them in some strange way but it always happens to me. I have had other aids that tell me all their problems and stuff I don't want to know or hear about. It is like I am doing more to help them then they are helping me. I had one aid who said she had four kids and no food. I had to go online and get info on a food bank near my home for her. Sad. I try to shut them up (nicely) but it only gets worse. I told this last aid I don't need to be entertained, I don't need anymore friends, I don't need to hear about your mother in law's issues with her aid, and other people in your life should not have any affect on my life. I am up front with what I expect on their first day, how I want things done, etc. but from what I have been told the norm for these type of workers is at first they are usually good but then they go downhill fast. What I have found that happens (esp when it is a state-run program) is that the state may pay the aid company $20.00 per hour or so but they hire a worker for $8-9 an hour and company pockets the rest...and they make money. They know which workers are bad and they just keep sending them to different people all the time. They are not training them and I have had quite a few aids that this is their first job in the United States and English is not their primary language. So, there is a language and cultural barrier because in their home country certain things are not done our way. I think it is not fair to the person whose first job it is but esp not fair to me being the patient in pain.

I had used a different company about six years ago and had my first aid for two years and the second one for 1 1/2 so I know it is not me. Both of them were like part of my family and did their work. Lately, all I am finding are aids that don't want to work, steal, cheat, and do anything they can to rip people off. I get angry and report them because I don't want them going to others to do the same thing.

I contacted the aid co. today and told the supervisor what went on. She said and listened then said "Well she has two other clients and I have no complaints from them." I said "Well the one client is deaf and it doesn't matter to him if you send someone that talks excessively to them since he can't hear her but for me it is not working." It was almost like she didn't want to hear it or anuything about my needs. I told her not to send me anyone that I will keep searching for an aid on my own. At least I will have peace and quiet for a bit until a new person comes in and hopefully they will be alot calmer;.) Thanks for your input.
kathy d

Holy Hannah Kathy! I don't think I could have handled the whole situation as well as you did. Give yourself a pat on the back! I sure hope you find a kind and understanding aid soon, you deserve it sweetie. :Heart: Karen