Aa
struggling
Here recently I just feel like crying. I am so upset about all of this. The situation I am in with MS. I hate having to have help. I do not want help.I want to do this myself!
My laundry is not being done like I like it. My kitchen is a wreck. I can not find my stuff because different people come in to help and put things in different places. I just do not want to do this!
LA dx 2008
My laundry is not being done like I like it. My kitchen is a wreck. I can not find my stuff because different people come in to help and put things in different places. I just do not want to do this!
LA dx 2008
Good morning, LA. Just wanted to pop through your post and ask if it is feeling a little better over there? I love the advice JJ gave about writing your lists ... I hope you can find the time in your busy life to do that soon.
lot of hugs,
L
lot of hugs,
L
LA,
You have certainly earned the right to be angry and have a pity party. I can't believe you've lasted this long. I , too, have family "help" me put and I hate it because of the loss of control. Nobody let's me drive, they always say they'll run my errands or do my shopping meaning I'm stuck at home even more. I SO get the anger and the frustration.
I think JJ's idea was a good one, actually excellent. And hats off to you JJ for what you are accomplishing despite your issues.
You can always come here and find friends. I hope you can work at a system that works for you!! Take care!!
Hugs,
Ren
You have certainly earned the right to be angry and have a pity party. I can't believe you've lasted this long. I , too, have family "help" me put and I hate it because of the loss of control. Nobody let's me drive, they always say they'll run my errands or do my shopping meaning I'm stuck at home even more. I SO get the anger and the frustration.
I think JJ's idea was a good one, actually excellent. And hats off to you JJ for what you are accomplishing despite your issues.
You can always come here and find friends. I hope you can work at a system that works for you!! Take care!!
Hugs,
Ren
LA,
Wow you are super woman! I can barely manage my job, hubby and 2 grown healthy children this summer with my MS. I am sad and angry because I can't clean, cook etc. like I could before and I hate not living in a clean house. My family says that they don't care so don't worry - ha - I care so why don't you all get off your healthy butts and clean the darn house and make me dinner for a change?!!
The only one that helps is my 21 y/o son who is home for the summer. My daughter just stays with friends and than says I would cook etc. if I was ever there and hubby thinks that since he now has diabetes that and a job is enough burden for him so no help there!
I'm so sorry that you are going through this but want you to know as someone looking in from the outside I am impressed as heck with how well you have done! I am going to smack myself up for the pity party that I thought I deserved. I don't but if you need one - you go girl cause you have earned it.
Hugs,
Erin :)
Wow you are super woman! I can barely manage my job, hubby and 2 grown healthy children this summer with my MS. I am sad and angry because I can't clean, cook etc. like I could before and I hate not living in a clean house. My family says that they don't care so don't worry - ha - I care so why don't you all get off your healthy butts and clean the darn house and make me dinner for a change?!!
The only one that helps is my 21 y/o son who is home for the summer. My daughter just stays with friends and than says I would cook etc. if I was ever there and hubby thinks that since he now has diabetes that and a job is enough burden for him so no help there!
I'm so sorry that you are going through this but want you to know as someone looking in from the outside I am impressed as heck with how well you have done! I am going to smack myself up for the pity party that I thought I deserved. I don't but if you need one - you go girl cause you have earned it.
Hugs,
Erin :)
Thank you everyone for your help and support. I think some of the issues that have been causing me stress will be resolved soon.
We have 4 adopted children with Down syndrome. Actually we have a total of 7 children. Two bio and five adopted. One of our adopted is a healthy boy.
The kids get help from the state. Staff from our counties, not even sure what to call it......there are organizations that serve mentally handicapped children and adults and our children get services from our counties organization.
That means I have at least two people in my home 7 hours a day taking care of my children. That is a GOOD thing.....when it works.
We are the first family with children in our county to ever receive these services so we are their guinea pigs. After 5 months I think they are finally getting their act together.
I have had some real unpleasant people in here working with my kids. I had not problem showing them the door.
It is one thing to interview someone and think they are great but another to actually have them working in your home!
I am grateful for the help BUT it has its stress.
My 11 year old son with Downs was diagnosed with Autism this week. We knew but it was still difficult.
I am feeling like things are back on track as much as they can be.
I have a nasty infection that started in one of my injection sites and that has really worried me. I am on a mega dose antibiotic. It REALLY HURTS!!!
I am for sure going to take the advice given here. Thank you for being my friends. :-) My life has been very busy with my children and I have not had a lot of time to develop real friendships over the years but I know I have friends here.
LA
We have 4 adopted children with Down syndrome. Actually we have a total of 7 children. Two bio and five adopted. One of our adopted is a healthy boy.
The kids get help from the state. Staff from our counties, not even sure what to call it......there are organizations that serve mentally handicapped children and adults and our children get services from our counties organization.
That means I have at least two people in my home 7 hours a day taking care of my children. That is a GOOD thing.....when it works.
We are the first family with children in our county to ever receive these services so we are their guinea pigs. After 5 months I think they are finally getting their act together.
I have had some real unpleasant people in here working with my kids. I had not problem showing them the door.
It is one thing to interview someone and think they are great but another to actually have them working in your home!
I am grateful for the help BUT it has its stress.
My 11 year old son with Downs was diagnosed with Autism this week. We knew but it was still difficult.
I am feeling like things are back on track as much as they can be.
I have a nasty infection that started in one of my injection sites and that has really worried me. I am on a mega dose antibiotic. It REALLY HURTS!!!
I am for sure going to take the advice given here. Thank you for being my friends. :-) My life has been very busy with my children and I have not had a lot of time to develop real friendships over the years but I know I have friends here.
LA
Thats a bad place to be in...you have had some good advice and I won't confuse you woth more...actually not sure I could you any more advice.
But I can feel what you are going thru..I have had a meltdown this week also. Its just very frustrating but talking about it is the first step out of it.
hugs to you and you are not in this alone for sure...
meg
But I can feel what you are going thru..I have had a meltdown this week also. Its just very frustrating but talking about it is the first step out of it.
hugs to you and you are not in this alone for sure...
meg
Oh LA,
I'm sorry :-( Please know you are in my thoughts. Lots of ((hugs)) for you, too.
~Jess
I'm sorry :-( Please know you are in my thoughts. Lots of ((hugs)) for you, too.
~Jess
LA, I'm so sorry this you've suffered this loss of control. I think it is huge and wish I could be there to help you cry. I do think that you need to work with someone to label all of your cabinets and drawers so that things are close to where you need them. I understand how awful it is to HAVE to have someone clean/straighten your space and how disconcerting it is to have some else organise your things.
I had to deal with that when my sister came in. On one hand it was great that things were neater, but now I have to ask her where evrerything is. It makes me feel likes less than a capable human being.
Take care. Today really has been a stupid day in this stupid disease.
Know we love you.
Quix
I had to deal with that when my sister came in. On one hand it was great that things were neater, but now I have to ask her where evrerything is. It makes me feel likes less than a capable human being.
Take care. Today really has been a stupid day in this stupid disease.
Know we love you.
Quix
Everybody here has given you such good answers. All I can do is send you gentle hugs.
I try to maintain a sense of humor, but there are some days where everything just BITES! Let your tears flow. Maybe tomorrow will be a little better. With the unpredictability of this stupid disease, I try to tell myself it's just as unpredictable that tomorrow will be a better day. I'm hoping that it is for you.
Big soft, gentle hugs, dear one,
Guitar_grrl
I try to maintain a sense of humor, but there are some days where everything just BITES! Let your tears flow. Maybe tomorrow will be a little better. With the unpredictability of this stupid disease, I try to tell myself it's just as unpredictable that tomorrow will be a better day. I'm hoping that it is for you.
Big soft, gentle hugs, dear one,
Guitar_grrl
I am so sorry to hear that you are feeling this way. I had a "meltdown" myself the other day. I feel trapped in this body, scared to death. I completely understand how you are feeling. I hate needing help. I hate crying too. No one really knows what to say to me when I freak out about this.
Try not to compare your disease with your youth pastor's. I am terrified of the possiblity of that happening to me too. I do feel a bit better taking the DMD. Stay strong. Its understandable to have "bad days". We are all here with you..with the same stupid disease.
Anger--That's an emotion I can relate to.
I hope you don't punch the wall tho. You'll break your hand..
Take Care!!
Kristi
Try not to compare your disease with your youth pastor's. I am terrified of the possiblity of that happening to me too. I do feel a bit better taking the DMD. Stay strong. Its understandable to have "bad days". We are all here with you..with the same stupid disease.
Anger--That's an emotion I can relate to.
I hope you don't punch the wall tho. You'll break your hand..
Take Care!!
Kristi
COMMUNITY LEADER
Hey LA,
I too hear you!!!
Sweet Pea, I'm going to tell you something I learnt when i was told my son had Asperger's, making him the 5th family member who would always need something more than the norm, it was overwhelming news. "Pick your battles and dont sweat the little things" at the time I thought it was a grossly over simplified but it helped me let go of the unimportant and have the strength to go into battle when ever I needed too.
Take a moment to work out what you WANT and what you NEED and make it happen! Ask your helper(s) to do it YOUR way because you can't find anything and this upsets and frustrates you unnecessarily. Start with what upsets you the most, creating a list of importance, until your done but dont leave anything out. When your finished look at your list again, find all the things that you have no control over and set them aside, tackle them when your stronger or sit down with someone important to you and get them off your shoulders.
You now should have a list of things that you can do something about, either by asking or by letting go, YOU are taking back some control! An example of something you can let go would be say the way a helper irons your clothes, the point being at least they are ironed, so it should be in the category of sweating a little thing. Its a bigger deal if your helper is putting your ironed clothes into the wrong closet, helpful becomes unhelpful so you need to keep that on your list of things you can control.
What ends up happening is by writing down whats bothering you, you can reorganise in your minds eye, whats really bothering you and find the little things that you can let go, you should feel more in control than you did before. Sometimes all the little things start to add and add until one more little things is just too much and everything big or little gets thrown together, the emotional dam bursts because it is too overwhelming.
Just so you know, I can not stand the way my mother washes my dishes when she pops over, its really got nothing to do with me needing them done and more to do with her needing to do something to help because she loves me. I have a choice, ask her to do them differently to keep me happy or let her do them her way to keep her happy, me being me end up rewashing the dishes after she's gone home, may sound childish but this secret rewashing actually makes me happy.
I did totally loose the plot when my Aspie brother decided to help by organising my pantry (food cupboard) as a surprise, oh boy was I surprised lol Yes it looked neat and organised but i couldn't find anything I wanted, took me weeks to get it back to the organised chaos that i'm more comfortable with. In truth it really had nothing to do with the cupboard and more to do with me feeling like I was loosing my independance, needing help even when i didn't want it, I still feel that way but I like to think I handle things a little differently.
Hope you feel more like your self soon, be kind to your self and be brave and ask for what you want and need, you never know it might happen :-)
Cheers......JJ
[[[[[[[[[[[[[[[[[[[[[[[HUGS]]]]]]]]]]]]]]]]]]]]
I too hear you!!!
Sweet Pea, I'm going to tell you something I learnt when i was told my son had Asperger's, making him the 5th family member who would always need something more than the norm, it was overwhelming news. "Pick your battles and dont sweat the little things" at the time I thought it was a grossly over simplified but it helped me let go of the unimportant and have the strength to go into battle when ever I needed too.
Take a moment to work out what you WANT and what you NEED and make it happen! Ask your helper(s) to do it YOUR way because you can't find anything and this upsets and frustrates you unnecessarily. Start with what upsets you the most, creating a list of importance, until your done but dont leave anything out. When your finished look at your list again, find all the things that you have no control over and set them aside, tackle them when your stronger or sit down with someone important to you and get them off your shoulders.
You now should have a list of things that you can do something about, either by asking or by letting go, YOU are taking back some control! An example of something you can let go would be say the way a helper irons your clothes, the point being at least they are ironed, so it should be in the category of sweating a little thing. Its a bigger deal if your helper is putting your ironed clothes into the wrong closet, helpful becomes unhelpful so you need to keep that on your list of things you can control.
What ends up happening is by writing down whats bothering you, you can reorganise in your minds eye, whats really bothering you and find the little things that you can let go, you should feel more in control than you did before. Sometimes all the little things start to add and add until one more little things is just too much and everything big or little gets thrown together, the emotional dam bursts because it is too overwhelming.
Just so you know, I can not stand the way my mother washes my dishes when she pops over, its really got nothing to do with me needing them done and more to do with her needing to do something to help because she loves me. I have a choice, ask her to do them differently to keep me happy or let her do them her way to keep her happy, me being me end up rewashing the dishes after she's gone home, may sound childish but this secret rewashing actually makes me happy.
I did totally loose the plot when my Aspie brother decided to help by organising my pantry (food cupboard) as a surprise, oh boy was I surprised lol Yes it looked neat and organised but i couldn't find anything I wanted, took me weeks to get it back to the organised chaos that i'm more comfortable with. In truth it really had nothing to do with the cupboard and more to do with me feeling like I was loosing my independance, needing help even when i didn't want it, I still feel that way but I like to think I handle things a little differently.
Hope you feel more like your self soon, be kind to your self and be brave and ask for what you want and need, you never know it might happen :-)
Cheers......JJ
[[[[[[[[[[[[[[[[[[[[[[[HUGS]]]]]]]]]]]]]]]]]]]]
Your MS is not the same MS that your youth pastor has. If you get a chance, though, you might want to take a quick punch at a wall for him.
You have every right to be angry. Very angry. And you also need to turn that anger into something useful when you are done kicking and screaming.
- L
You have every right to be angry. Very angry. And you also need to turn that anger into something useful when you are done kicking and screaming.
- L
LA I'm so sorry for what you are going through. It is truly demoralizing just as Lulu said. The special way that you have taken care of your home and have kept your food organized is such a personal thing. It's such a part of you and it's important.
This disease just keeps taking and taking.
I think labeling everything and having your organization method written out would be the first step. There are professional organizers. I wonder if there is one that might donate her services for you. They do a great job.
I hope you don't end up like your pastor too!!
((((Hugs))))
Red
This disease just keeps taking and taking.
I think labeling everything and having your organization method written out would be the first step. There are professional organizers. I wonder if there is one that might donate her services for you. They do a great job.
I hope you don't end up like your pastor too!!
((((Hugs))))
Red
Thank you Lulu. I do need help trying to figure this out. Labels or something for the kitchen.
It IS demoralizing. An it makes me so angry. I am not one to be angry but this is sure making me want to punch a hole in the wall.
My youth pastor I had when i was in high school has MS. The very aggressive kind. He is now total care with a feeding tube. He used to punch holes in the wall. Now I get why he did.
Praying that I never end up like he has.
LA
It IS demoralizing. An it makes me so angry. I am not one to be angry but this is sure making me want to punch a hole in the wall.
My youth pastor I had when i was in high school has MS. The very aggressive kind. He is now total care with a feeding tube. He used to punch holes in the wall. Now I get why he did.
Praying that I never end up like he has.
LA
I hear you, girlfriend. How demoralizing this da mn disease can be when it is playing havoc with our bodies.
There are lots of things in life that we want, but don't necessarily get. It frustrates the heck out of me, too, that everything isn't just as i want it.
Having various people helping must add to the confusion. When you are ready, how about we try to brainstorm some ways we can organize the helpers so you are back in control of directing this operation and your home?
In the meantime, crying is really good. It beats the alternative of kicking the dog or yelling at your partner.
sending gentle hugs to you,
Lulu
There are lots of things in life that we want, but don't necessarily get. It frustrates the heck out of me, too, that everything isn't just as i want it.
Having various people helping must add to the confusion. When you are ready, how about we try to brainstorm some ways we can organize the helpers so you are back in control of directing this operation and your home?
In the meantime, crying is really good. It beats the alternative of kicking the dog or yelling at your partner.
sending gentle hugs to you,
Lulu
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