thereseg79
04-22-2008, 09:34 PM
everyone in my family knows about my diagnosis. Today I'm having the "ms fatigue" as I like to call it. You know, that feeling like your moving through wet sand. Or like someone drugged you, like someone just placed an extra 20lbs on your body, or something like that. It's hard to describe unless you experienced it. Ok, back to what I was saying. They all know, right, well when they see me today and ask me what's wrong, I respond I'm tired. I mean really tired. They're like, oh. No one in my household acknowledges my MS. It's like it doesn't exist. Today it makes me want to scream. It would be nice if someone would say, Don't worry, I'll take care of the kids and everything, you just lay down and rest. Nope. It just doesn't exist.
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thereseg79
04-22-2008, 09:35 PM
Oh well, I'm going to bed now.
tarapags1107
04-22-2008, 10:00 PM
i know exactly how u feel hun.... im tired all the time too and when my fiance throws in the words of lazy we fight making me inevitably more tired and unable to go out...he gets irked when i can't answer him quickly enough....ya know when your brain jut doesn't want to process things as quickly as it used to .... you could try asking your hubby to help you out around the house more often and have him talk to your kids (if their old enought that is) to help with chores around the house and to give you a hand when you need it.. I know you feel like you shouldn't have to ask for help and people should just offer a hand once in a while since what we struggle with on a daily basis just to function is often overwhelming, but they can't see, feel, or possibly know what you go through. My fiance also never really asks me how I'm feeling, and I'm the one always bringing up my issues to him. It really makes it seem like no one cares at times. Did you just recently get diagnosed?? It couldn't hurt going to one of the local support groups with your husband at least so he can maybe get a better picture of what you deal with. I'm going to ask my doc myself if theres anything I can take for the chronic fatigue...... try to get enough rest when you can and listen to your body. If your not able to do something around the house or go out somewhere, don't feel obligated to. You need to put your health first. Stress is not good for anyone, especially with an autoimmune disorder. If you don't allready, start prioritizing. Write down a list of what you need to do and what you "want" to get done during each day....... Good luck and take care.... get some ZzzzzZzzs. Good nite..
Tara
Tara
MSJayhawk
04-22-2008, 10:50 PM
It is always an obstacle to overcome within many family groups. Some families readily take up where you can not. For me, it was a sit down and explain my limitations. When I was bed-ridden, the family knew that I needed help. After 3 months of bed, chores got done. Was everything satisfactory? No, but it was done. Encourage your kids or family members with some "thanks for helping me out". Children can often be the most resilient.
If your house is not as clean as you would like it to be, live with it. When you are felling better, then clean like you want to clean. Your family may take notice of the difference. Learn to accept limitations when you are limited. As to others' thoughts of your being lazy, you can not change minds. MS is that kind of disease. You must take care of yourself first or you can not help anyone else.
If your house is not as clean as you would like it to be, live with it. When you are felling better, then clean like you want to clean. Your family may take notice of the difference. Learn to accept limitations when you are limited. As to others' thoughts of your being lazy, you can not change minds. MS is that kind of disease. You must take care of yourself first or you can not help anyone else.
tuckersmom
04-22-2008, 10:57 PM
I'm with ya hun! I say I'm tired and they say.."well I'm tired too"! I just wanna slug them!
I have learned over these years to expect to have no support or understanding. Then I am just pleasantly surprised when I get some. I don't say anything anymore. I have decided that many just can not understand. To expect them to is unrealistic. No one can understand unless they walk (or stumble haha! ) in your shoes. I try to remember that if someone who has had to have chemo. and tried to explain to me how they feel, there is no way I could. I have been blessed to not have to go through that so I could not possibly understand.
Remember, you have to take care of yourself and rely on those who know what you are going through. That may be someone in your everyday life you meet through a support group or just here on this board. I have learned to set boundries on what I will say yes to and when I say no... there is no discussion... it is simply no. It has taken me 4 years to get to this point but it's a much more peaceful existence. During the past 4 years I have screamed, broken dishes (to make the point that I wasn't washing them!), refused to do laundry .... whatever it took to get their attention at the time.
You are not alone..we are here.
Lisa
I have learned over these years to expect to have no support or understanding. Then I am just pleasantly surprised when I get some. I don't say anything anymore. I have decided that many just can not understand. To expect them to is unrealistic. No one can understand unless they walk (or stumble haha! ) in your shoes. I try to remember that if someone who has had to have chemo. and tried to explain to me how they feel, there is no way I could. I have been blessed to not have to go through that so I could not possibly understand.
Remember, you have to take care of yourself and rely on those who know what you are going through. That may be someone in your everyday life you meet through a support group or just here on this board. I have learned to set boundries on what I will say yes to and when I say no... there is no discussion... it is simply no. It has taken me 4 years to get to this point but it's a much more peaceful existence. During the past 4 years I have screamed, broken dishes (to make the point that I wasn't washing them!), refused to do laundry .... whatever it took to get their attention at the time.
You are not alone..we are here.
Lisa
Nenu
04-23-2008, 07:08 AM
I think it's an example of how extremely misunderstood MS is. Part of this being due to the fact that it's so individualized, and sometimes I think people don't believe you're 'sick' until you're showing visible signs (ie: in a chair). Until they walk a day in our shoes.. you know the expression ;).
I have a lot of 'online' friends, who I've had to literally educate about MS. My solution? Keep a journal of day to day progress that's accessible for them to read, and I pulled a pretty comprehensive list from an MS site of the various 'symptoms' that you can have from the disease, and I whip out MS Paint and highlight the ones I've experienced versus the ones I'm currently experiencing. Sent that to my family by email as well. Any little bit helps to educate. The responses I usually get are "Wow, I didn't know it could have all these symptoms". I always remind them as well, "This isn't like the flu, it's not going anywhere and I'm not going to wake up tomorrow and not have it anymore".
I'm in a situation where I live in a country/region that has a high incidence of MS. Most I encounter and tell respond with "Oh my Aunt has MS" or "My co-worker has MS". It's actually rare that I encounter someone around me who doesn't know someone with the disease.
With that said, there's always going to be the ones that just 'don't get it'. There's plenty of them out there. All you can do is educate and if they don't 'get it', hopefully one day they will. Luckily for us, we have this excellent community where we can come and share our emotions with others that DO understand and are compassionate to what we have to deal with. :)
I have a lot of 'online' friends, who I've had to literally educate about MS. My solution? Keep a journal of day to day progress that's accessible for them to read, and I pulled a pretty comprehensive list from an MS site of the various 'symptoms' that you can have from the disease, and I whip out MS Paint and highlight the ones I've experienced versus the ones I'm currently experiencing. Sent that to my family by email as well. Any little bit helps to educate. The responses I usually get are "Wow, I didn't know it could have all these symptoms". I always remind them as well, "This isn't like the flu, it's not going anywhere and I'm not going to wake up tomorrow and not have it anymore".
I'm in a situation where I live in a country/region that has a high incidence of MS. Most I encounter and tell respond with "Oh my Aunt has MS" or "My co-worker has MS". It's actually rare that I encounter someone around me who doesn't know someone with the disease.
With that said, there's always going to be the ones that just 'don't get it'. There's plenty of them out there. All you can do is educate and if they don't 'get it', hopefully one day they will. Luckily for us, we have this excellent community where we can come and share our emotions with others that DO understand and are compassionate to what we have to deal with. :)
thereseg79
04-23-2008, 01:55 PM
i know exactly how u feel hun.... im tired all the time too and when my fiance throws in the words of lazy we fight making me inevitably more tired and unable to go out...he gets irked when i can't answer him quickly enough....ya know when your brain jut doesn't want to process things as quickly as it used to .... you could try asking your hubby to help you out around the house more often and have him talk to your kids (if their old enought that is) to help with chores around the house and to give you a hand when you need it.. I know you feel like you shouldn't have to ask for help and people should just offer a hand once in a while since what we struggle with on a daily basis just to function is often overwhelming, but they can't see, feel, or possibly know what you go through. My fiance also never really asks me how I'm feeling, and I'm the one always bringing up my issues to him. It really makes it seem like no one cares at times. Did you just recently get diagnosed?? It couldn't hurt going to one of the local support groups with your husband at least so he can maybe get a better picture of what you deal with. I'm going to ask my doc myself if theres anything I can take for the chronic fatigue...... try to get enough rest when you can and listen to your body. If your not able to do something around the house or go out somewhere, don't feel obligated to. You need to put your health first. Stress is not good for anyone, especially with an autoimmune disorder. If you don't allready, start prioritizing. Write down a list of what you need to do and what you "want" to get done during each day....... Good luck and take care.... get some ZzzzzZzzs. Good nite..
Tara
Thanks. I was dx in Sept. 2007. Going to a support group is a good idea. So is prioritizing and organizing. I always mean to do that but never get around to it. When I was first dx I had a talk with my kids. Since I don't look sick I guess it's like "out of sight, out of mind" The kids are 11, 8, and 6. My oldest son is special needs and really can't help much. I'm going to see if I can get my husband to go to a support group with me. Again, Thanks.
Tara
Thanks. I was dx in Sept. 2007. Going to a support group is a good idea. So is prioritizing and organizing. I always mean to do that but never get around to it. When I was first dx I had a talk with my kids. Since I don't look sick I guess it's like "out of sight, out of mind" The kids are 11, 8, and 6. My oldest son is special needs and really can't help much. I'm going to see if I can get my husband to go to a support group with me. Again, Thanks.
thereseg79
04-23-2008, 02:16 PM
Thank you, MSJayhawk, tuckersmom, and Nenu for your responses. At least ya'll understand.
taosdaphne
04-23-2008, 11:07 PM
I'm gonna vent here for a minute--haven't in awhile and need to today.
My father hasn't spoken to me in 2.5 years. He hung up on me when I called in a frantic frame of mind and said my partner had had a heart attack, was paddled back to life 6 times before they could chopper her to ABQ and the Heart Hospital, and THIS is why I wanted to retire early--commuting 2500 miles in a life and death situation is not something I want to repeat. "Well I'm not taking care of both of you." "Who's asking? We have plenty of money, insurance, long term care." He slammed the phone down and haven't heard from him since.
Got the MS diagnosis last spring, sent him a letter and a bunch of educational material. No response. Wrote to his wife, whom I like a lot. No response. Sent a couple of neutral cards. No response.
I know he's a psychologically sick man. He's wealthy and is paranoid everyone wants his money. But he's never met his 2 wonderful granddaughtrs (students at Columbia and Princeton), declined to go to my brother's wedding, doesn't have a friend in the world except his wife, who is literally being held hostage by his demands to control her life. Mother is deceased, one brother is on the verge of being committed, and the other, thank god, is supportive and wonderful, tho I haven't seen him since the dx. First thing he said was "That totally s***" and then he went online to find out everything he could. He and I are the only 2 sane members of the family.
But there are days like today when I lose all compassion for my father and just want to punch his eyes out. If it weren't for my partner and my numerous supportive friends, I would have NO ONE to care what happens to me. I'm 55 and my partner is 70 (with vasculitis and chronic fatigue) and we both know she'll probably die first. And I will be way more isolated than I am now--she does all the driving, including the RV. I HATE the dependency of this disease and hate that my family could take the gold medal in Dysfunction at the Olympics. Partner is on retreat, so I've given myself permission to rail at the world--I try not to do it with her, because she experiences much of the same troubles as I do, but if ONE MORE PERSON says "You look fantastic!"I'm going to knock their heads off. I hurt all the time, I'm always in danger of falling, and my acupuncturist has me brewing and drinking unknown twigs and bark. He gets it anyway, and his weird tonic is working.
Sorry to go on. I think I'll go ride my horse tomorrow, if anyone is around to help me get on him. Or find a ride to the pool. I'm doing as much as I can while I can, because we all know how unpredictable this disease is. But I'm just PO'd at my father. None of us (except the paranoid and commitable one) has EVER done anything but excel academically, not become drug addicts or thieves or married someome despicable, and he apparently has disowned us all. Families....grrrr. Give me a tribe any day.
Yours in crankiness, Daphne
My father hasn't spoken to me in 2.5 years. He hung up on me when I called in a frantic frame of mind and said my partner had had a heart attack, was paddled back to life 6 times before they could chopper her to ABQ and the Heart Hospital, and THIS is why I wanted to retire early--commuting 2500 miles in a life and death situation is not something I want to repeat. "Well I'm not taking care of both of you." "Who's asking? We have plenty of money, insurance, long term care." He slammed the phone down and haven't heard from him since.
Got the MS diagnosis last spring, sent him a letter and a bunch of educational material. No response. Wrote to his wife, whom I like a lot. No response. Sent a couple of neutral cards. No response.
I know he's a psychologically sick man. He's wealthy and is paranoid everyone wants his money. But he's never met his 2 wonderful granddaughtrs (students at Columbia and Princeton), declined to go to my brother's wedding, doesn't have a friend in the world except his wife, who is literally being held hostage by his demands to control her life. Mother is deceased, one brother is on the verge of being committed, and the other, thank god, is supportive and wonderful, tho I haven't seen him since the dx. First thing he said was "That totally s***" and then he went online to find out everything he could. He and I are the only 2 sane members of the family.
But there are days like today when I lose all compassion for my father and just want to punch his eyes out. If it weren't for my partner and my numerous supportive friends, I would have NO ONE to care what happens to me. I'm 55 and my partner is 70 (with vasculitis and chronic fatigue) and we both know she'll probably die first. And I will be way more isolated than I am now--she does all the driving, including the RV. I HATE the dependency of this disease and hate that my family could take the gold medal in Dysfunction at the Olympics. Partner is on retreat, so I've given myself permission to rail at the world--I try not to do it with her, because she experiences much of the same troubles as I do, but if ONE MORE PERSON says "You look fantastic!"I'm going to knock their heads off. I hurt all the time, I'm always in danger of falling, and my acupuncturist has me brewing and drinking unknown twigs and bark. He gets it anyway, and his weird tonic is working.
Sorry to go on. I think I'll go ride my horse tomorrow, if anyone is around to help me get on him. Or find a ride to the pool. I'm doing as much as I can while I can, because we all know how unpredictable this disease is. But I'm just PO'd at my father. None of us (except the paranoid and commitable one) has EVER done anything but excel academically, not become drug addicts or thieves or married someome despicable, and he apparently has disowned us all. Families....grrrr. Give me a tribe any day.
Yours in crankiness, Daphne
mary63
04-27-2008, 05:05 AM
[QUOTE=taosdaphne;3543346]I'm gonna vent here for a minute--haven't in awhile and need to today.
Hi Daphne-what a cranky old beep beep he sounds..why do people have to be like that?? they're the ones that miss out but they prob don't even realize . Who's to know what he really feels underneath- was he always that way?
I haven't told anyone except my husband that i might have MS- but he got drunk recently and blurted to people that i might be in a wheelchair soon- Grrrreat- thanks buddy....!!!!! :(
sometimes i just think oh whatever...its too tiring to all take in-almost tempted to start smoking again....
Hi Daphne-what a cranky old beep beep he sounds..why do people have to be like that?? they're the ones that miss out but they prob don't even realize . Who's to know what he really feels underneath- was he always that way?
I haven't told anyone except my husband that i might have MS- but he got drunk recently and blurted to people that i might be in a wheelchair soon- Grrrreat- thanks buddy....!!!!! :(
sometimes i just think oh whatever...its too tiring to all take in-almost tempted to start smoking again....
Nenu
04-27-2008, 07:57 AM
Mary, don't begin smoking again! I need to quit smoking myself, and I am finding it so difficult. Stay off the ugly sticks! ;)
Can't believe your husband would even suggest a wheelchair. Sounds like he needs some education that not all MSers even end up in a wheelchair.
Can't believe your husband would even suggest a wheelchair. Sounds like he needs some education that not all MSers even end up in a wheelchair.
mary63
04-29-2008, 07:31 AM
Hi! i guess that it just shows what people usually associate with the condition. Obviously there are heaps of people with MS just getting on with their lives with symptoms that can be not too visible- maybe there should be more awareness of that. but who wants people knowing i guess.. that damn pity thing again- arrrggggg!!!
Nenu
04-29-2008, 09:58 AM
I agree, literature etc for MS does need to include more pictures of those of us that aren't in a wheelchair. Let's see some working folks who blend right in the crowd, families with their children out in the park playing ball... sure, it's important to occasionally look at the 'worst case scenario', but let's not focus on MS being a 'wheelchair disease' anymore. My 2 cents. ;)