Aa
guilt:(
I feel so gulity. I have MS. I have a wonderful husband, 5 adopted children still at home (4 of them have Down syndrome)
We had two older adult biological daughters, two son in laws, and 3 sweet grand daughters.
I feel guilty because I have to have help with my children at home. We are lucky because my 4 children with Downs have Medicaid waivers.
That means Medicaid pays for staff to come in and meet the needs of the children. They did not get the Medicaid waiver because of my MS they got it because of their disibility.
So other ladies come in and do the job I was once doing all by myself. I am so grateful for the staff but so guilty sometimes.
There are days all I can do is sleep. Then there are days like today where i can go with my family and participate in what they are doing. I actually rode a small 4 wheeler today! It was a lot of fun until I got a nasty burn on my leg from the exhaust that required a trip to the ER.
I do what I can around my house. A few dishes. Some laundry. Basically taking care of my self.
I look healthy. I sure wish the ladies who come in could walk around in my body for a day or two.
I was told there were other staff who has worked in my house gossiping about me. Saying I sleep too much and think they are here to help me.
It has been a heavy burden on me. The staff who told me about the gossip is in trouble. I certainly did not need to hear it.
I feel guilty enough on my own.
LA
We had two older adult biological daughters, two son in laws, and 3 sweet grand daughters.
I feel guilty because I have to have help with my children at home. We are lucky because my 4 children with Downs have Medicaid waivers.
That means Medicaid pays for staff to come in and meet the needs of the children. They did not get the Medicaid waiver because of my MS they got it because of their disibility.
So other ladies come in and do the job I was once doing all by myself. I am so grateful for the staff but so guilty sometimes.
There are days all I can do is sleep. Then there are days like today where i can go with my family and participate in what they are doing. I actually rode a small 4 wheeler today! It was a lot of fun until I got a nasty burn on my leg from the exhaust that required a trip to the ER.
I do what I can around my house. A few dishes. Some laundry. Basically taking care of my self.
I look healthy. I sure wish the ladies who come in could walk around in my body for a day or two.
I was told there were other staff who has worked in my house gossiping about me. Saying I sleep too much and think they are here to help me.
It has been a heavy burden on me. The staff who told me about the gossip is in trouble. I certainly did not need to hear it.
I feel guilty enough on my own.
LA
Hi LA
I have just typed out a long reply and accidentally deleted it just before I was sending it so will try and remember what I wrote!
I think you have had some great responses and I am not sure I can add anything else but maybe there are a few thoughts I can share. I think it is really healthy to express, process and share your feelings. The guilt thing has been addressed by others and I agree with other people's comments and think that on reflection you have found that it is indeed loss and grief rather than guilt that is at the heart of your frustration.
Losing independence and control of things in our life is an enormous challenge. You are one of life's givers and not being able to do the things that you are obviously passionate about must be such a loss.However just remember that you are still there in person and those special children will love you for who you are and what you have already done for them in their lives.
As for other people's comments and judgments, just try and not let them hurt you. Think of wearing a coat of armour or feeling like you are in a bubble protected by an invisible cover. When you hear something that is hurtful think of the comment just bouncing off you and going back to the person who said it. It is their problem if they do not understand MS or are looking for a reaction. So never give them the satisfaction. Instead find your voice, retain your dignity and follow through the correct procedures as already suggested.
I just wanted to add that I share an understanding with JJ (Supermum) as I have a 19 year old son with Aspergers. I have thought about Ms and realised how hard it is having Aspergers where you look normal, but have such enormous problems with social interaction and communication. They are both hidden disabilities that are not understood by many people as they cannot be seen. I find it helpful to try and put myself in the other person's shoes and imagine how hard it must be for them to understand a condition that they cannot see. The only way anyone will understand is to be educated and I take every opportunity to talk about Ms and how it affects me as this helps others learn how they can help me. I really find it helps to talk.
So keep sharing what you are feeling, be proud of all that you have achieved, try and be strong and listen to your own gut feeling and inner instinct. If your body is tired and craving sleep and rest, it is because it needs it so do not worry what others think, you are your best own advocate.
I am going to sign off now before I lose this post again..I think there are gremlins in my machine!! Keep posting and believe in yourself, you are one of life's givers and although you may not physically be able to do what you used to, you still have many gifts that will be appreciated by those whose lives you have touched.
With love and hugs
Sarah xxx :)
I have just typed out a long reply and accidentally deleted it just before I was sending it so will try and remember what I wrote!
I think you have had some great responses and I am not sure I can add anything else but maybe there are a few thoughts I can share. I think it is really healthy to express, process and share your feelings. The guilt thing has been addressed by others and I agree with other people's comments and think that on reflection you have found that it is indeed loss and grief rather than guilt that is at the heart of your frustration.
Losing independence and control of things in our life is an enormous challenge. You are one of life's givers and not being able to do the things that you are obviously passionate about must be such a loss.However just remember that you are still there in person and those special children will love you for who you are and what you have already done for them in their lives.
As for other people's comments and judgments, just try and not let them hurt you. Think of wearing a coat of armour or feeling like you are in a bubble protected by an invisible cover. When you hear something that is hurtful think of the comment just bouncing off you and going back to the person who said it. It is their problem if they do not understand MS or are looking for a reaction. So never give them the satisfaction. Instead find your voice, retain your dignity and follow through the correct procedures as already suggested.
I just wanted to add that I share an understanding with JJ (Supermum) as I have a 19 year old son with Aspergers. I have thought about Ms and realised how hard it is having Aspergers where you look normal, but have such enormous problems with social interaction and communication. They are both hidden disabilities that are not understood by many people as they cannot be seen. I find it helpful to try and put myself in the other person's shoes and imagine how hard it must be for them to understand a condition that they cannot see. The only way anyone will understand is to be educated and I take every opportunity to talk about Ms and how it affects me as this helps others learn how they can help me. I really find it helps to talk.
So keep sharing what you are feeling, be proud of all that you have achieved, try and be strong and listen to your own gut feeling and inner instinct. If your body is tired and craving sleep and rest, it is because it needs it so do not worry what others think, you are your best own advocate.
I am going to sign off now before I lose this post again..I think there are gremlins in my machine!! Keep posting and believe in yourself, you are one of life's givers and although you may not physically be able to do what you used to, you still have many gifts that will be appreciated by those whose lives you have touched.
With love and hugs
Sarah xxx :)
Thank you everyone!
Kristi- I have asked the supervisor to educate the people they send here about M.S. but he wont HIPPA is an issue. So I have to do it when they show one. One lady had never heard of MS!!
JJ- I can relate to your situation with your son. I have to go through 4 IEP's every year. We are fighting for a one on one aid for our 8 year old daughter this year.
It is Is the cup half full or half empty. I am very grateful to have my quiver full but sometimes it is way too full.
I see that guilt was the wrong way to describe what I feel. It is really about the sadness and loss of what I once had in me. It makes me angry having to have these people come in and do my job.
Carol- I know for sure they are thinking that way about me! I look fine. I even go with my husband to go shopping or out to eat. I ride a cart to shop. It is not difficult to go out and eat!!
I have weeks when I have to stay home and sleep all day. I need so much sleep sometimes.
Thank you Julie and Bob. Guilt is not a good thing for someone with MS. It wipes us out!
I know we ALL have simular issues and feelings about our diagnosis and how others see us. If we are not visually disabled it is difficult for others to really get it.
My great aunt had MS and she looked fine but her vision was terrible and she could not walk. My vision was the first thing I really noticed-ON- and then my right leg.
I remember my grandma saying she thought my great aunt could do more than she let on. Hmmm.........
LA
Kristi- I have asked the supervisor to educate the people they send here about M.S. but he wont HIPPA is an issue. So I have to do it when they show one. One lady had never heard of MS!!
JJ- I can relate to your situation with your son. I have to go through 4 IEP's every year. We are fighting for a one on one aid for our 8 year old daughter this year.
It is Is the cup half full or half empty. I am very grateful to have my quiver full but sometimes it is way too full.
I see that guilt was the wrong way to describe what I feel. It is really about the sadness and loss of what I once had in me. It makes me angry having to have these people come in and do my job.
Carol- I know for sure they are thinking that way about me! I look fine. I even go with my husband to go shopping or out to eat. I ride a cart to shop. It is not difficult to go out and eat!!
I have weeks when I have to stay home and sleep all day. I need so much sleep sometimes.
Thank you Julie and Bob. Guilt is not a good thing for someone with MS. It wipes us out!
I know we ALL have simular issues and feelings about our diagnosis and how others see us. If we are not visually disabled it is difficult for others to really get it.
My great aunt had MS and she looked fine but her vision was terrible and she could not walk. My vision was the first thing I really noticed-ON- and then my right leg.
I remember my grandma saying she thought my great aunt could do more than she let on. Hmmm.........
LA
I can understand how you are feeling. I hate having MS. I feel useless many times. People don't educate themselves about this disease and I feel like I have to tell them about it. You are a giving person to have adopted children w special needs.
I know its easier said than done to ignore the hurtful things people are saying. I can't imagine how they can be in that profession and be so cruel and ignorant.
Try to keep your chin up. I'm glad that their bosses know what's been going on. You definitely don't need this negativity in your life or your kids lives.
Hugs to you!
Kristi
I know its easier said than done to ignore the hurtful things people are saying. I can't imagine how they can be in that profession and be so cruel and ignorant.
Try to keep your chin up. I'm glad that their bosses know what's been going on. You definitely don't need this negativity in your life or your kids lives.
Hugs to you!
Kristi
Guilt is only useful if it motivates us to do something we should do (or not do) that we wouldn't otherwise without it. In your case, there is absolutly nothing you can do so it's a useless emotion.
I know it's easier said than done. This is something I struggle w from time to time. I have found that the guilt I often feel is really grief. So, I grieve for a while then I move on. Let it go girlfriend.
Julie
I know it's easier said than done. This is something I struggle w from time to time. I have found that the guilt I often feel is really grief. So, I grieve for a while then I move on. Let it go girlfriend.
Julie
I told someone else here on a PM that guilt is "self imposed" and internal. other people will always talk. Why should you feel guilty. I'm kind of lucky. I work from home and get paid to think about other peoples problems. My partner and boss tell me to nap if I need to.
If you need to sleep, there is no reason to feel guilty.
Bob
If you need to sleep, there is no reason to feel guilty.
Bob
COMMUNITY LEADER
Ignorant gossip about someone with a disability has seen placid me go 'pit bull' on them, i dont know whats worse hearing it first hand or being told about it by someone else, hurts big time and I can't help seeing red!
I was happily drinking coffee at a friends house, when she told me about the things she heard this group of woman saying about my son, a few ugly things about me too but what made it worse was that these women were disability workers and the main instagator was going to be my son's aide at school for the next few years. I was upset with my friend for telling me, I know now she didn't tell me to hurt me, she told me because it disturbed her enough that she felt she had to speak up, though at the time I was too mortified, angry and embarrased, I was also very hurt by the amount of ignorant gossip being directed at my family because of my son's disability, though I was too upset to see it that way at the time.
I made an official complaint and in the end he got an incredible aide, the school took action by instigating more indepth training for all the schools aides and teachers but I was still uncomfortable when ever this group of disability workers were in my or my son's orbit. To be honest, i'll still be pissed off for ever more, HOW DARE THEY, SHAME!!
I'm really sorry for your pain, I do understand it first hand and it should never happen, do what ever you think needs doing to put this right for you!
HUGS.............JJ
I was happily drinking coffee at a friends house, when she told me about the things she heard this group of woman saying about my son, a few ugly things about me too but what made it worse was that these women were disability workers and the main instagator was going to be my son's aide at school for the next few years. I was upset with my friend for telling me, I know now she didn't tell me to hurt me, she told me because it disturbed her enough that she felt she had to speak up, though at the time I was too mortified, angry and embarrased, I was also very hurt by the amount of ignorant gossip being directed at my family because of my son's disability, though I was too upset to see it that way at the time.
I made an official complaint and in the end he got an incredible aide, the school took action by instigating more indepth training for all the schools aides and teachers but I was still uncomfortable when ever this group of disability workers were in my or my son's orbit. To be honest, i'll still be pissed off for ever more, HOW DARE THEY, SHAME!!
I'm really sorry for your pain, I do understand it first hand and it should never happen, do what ever you think needs doing to put this right for you!
HUGS.............JJ
I'm on the Medicare Advantage and I have someone that comes in every day for 2 hours to do what ever I need them to... It's mainly house work or maybe running an errand for me... It's also nice to have someone to talk to if I'm feeling like it... It was so hard for me to except this help in the beginning... I felt very guilty... This was things that I had done my whole life...
I also wondered if they would look at me and think to themselves that I was just using the system... Kind of like here's a 46 yr old woman who looks fine on the out side... Even though I'm in a chair I would feel like they was saying under their breath, "she could do a lot of this stuff herself"...
After about 2 years of this I have finally realized that so what? I am evaluated every 6 mo. by my case worker and the head nurse... If they felt like I didn't need these services they would be the first to speak up... That's their jobs, to weed out who and who doesn't need the services... My biggest problems is that I'm never satisfied with how they do things... lol... I would never say anything to them (Unless it was very sloppy work) about it but if ya'll are anything like me there is nobody that can clean your house better than you...lol
Any way I think we all have those guilt feelings... Maybe it's because we look so normal... I do agree with Lulu about talking to the agency though... You would think they would know better than to ever tell you something like that... Do these people not realize what stress does to people with MS? That's just it, probably not... Why? Because once again we look so normal...lol...
Hang in there hon and as hard as it is just ignore them and speak to the agency...
I'll be praying,
Carol
I also wondered if they would look at me and think to themselves that I was just using the system... Kind of like here's a 46 yr old woman who looks fine on the out side... Even though I'm in a chair I would feel like they was saying under their breath, "she could do a lot of this stuff herself"...
After about 2 years of this I have finally realized that so what? I am evaluated every 6 mo. by my case worker and the head nurse... If they felt like I didn't need these services they would be the first to speak up... That's their jobs, to weed out who and who doesn't need the services... My biggest problems is that I'm never satisfied with how they do things... lol... I would never say anything to them (Unless it was very sloppy work) about it but if ya'll are anything like me there is nobody that can clean your house better than you...lol
Any way I think we all have those guilt feelings... Maybe it's because we look so normal... I do agree with Lulu about talking to the agency though... You would think they would know better than to ever tell you something like that... Do these people not realize what stress does to people with MS? That's just it, probably not... Why? Because once again we look so normal...lol...
Hang in there hon and as hard as it is just ignore them and speak to the agency...
I'll be praying,
Carol
Hi Lulu,
It is being handled by the supervisor. it is just a painful situation to be in.
LA
It is being handled by the supervisor. it is just a painful situation to be in.
LA
It's hard to have a tough skin in your situation. If you were one of the kids and they were having problems with other people talking about them, what advice would you give to them?
In addition to toughening up your own reaction, have you considered discussing your needs with the agency that places these workers? There should be a clear understanding why they are in your home and that should exclude all the idle talk. I would definitely let that be known to the agency.
good luck, dear. You have had quite a haul of it and don't need this extra worry.
hugs, L
In addition to toughening up your own reaction, have you considered discussing your needs with the agency that places these workers? There should be a clear understanding why they are in your home and that should exclude all the idle talk. I would definitely let that be known to the agency.
good luck, dear. You have had quite a haul of it and don't need this extra worry.
hugs, L
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