Aa
Do you feel guilty from faking when youre not?
Do any of you ever think that you are pretending to be unable to do things or imagining that there is a serious problem with your health? This happens to me more on days that I'm not thinking good. Before I was sick like this I wasn't the kind of person to fake weakness or even admit that I had any, so I don't know what it's about. I guess it could just be that I'd prefer to be a faker and able to just turn off my problems with my body and mind. I get washed over with guilt though and it's rough to go through those feelings when I'm around people who don't get it at all. I'm sure I'm coming off as a lyer to them when I talk about stuff sometimes. Does this happen to anyone else/>?
I am not sure that it is proper to push beyond. My therapist would tell me a big NO.
Both the PT and OT stressed energy conservation. What I find when I push beyond is I can not do the things that need to be done the following day or two or three.
A good example is I had a very busy week last week. It was not necessarily a physically active week but stressful and emotional.
I was only about to stay up about 10 hours on Friday. On Saturday I got up at 9am, went back to bed at 10 am and slept until 2:30. I was back out by 9pm again. Sunday I felt better.
But it is not just the physical activity that knocks me out but the emotional also.
I HATE steps! We live in a quad and it is awful. I can not carry anything up the steps or down. We have hand rails on both sides of the steps and it takes me hanging on to both rails to get up.
I hand onto both rails to get down so I do not fall. It stinks. Mind you not all that long ago I could hop up those steps two at a time. irritating!!
I still cannot get my mind around or accept that I am like this. I loved being physically active and could work like a horse. No more.
People look at me and see someone who LOOKS a lot younger than she really is but feels much older than she really is.
I feel like I have to explain myself but it does no good. :-( and I struggle with it. I don't want to go out much because I don't want to run into people who know I have MS and have help coming in.
I am afraid they will walk away wondering what is up. Although I use the ride on carts in the stores when I can. It is amazing how many people need to use them. Especially when you walk in and there are none left for you to use! Oh well.............of subject.sorry
LA
DX'd Feb 2008
LA
Both the PT and OT stressed energy conservation. What I find when I push beyond is I can not do the things that need to be done the following day or two or three.
A good example is I had a very busy week last week. It was not necessarily a physically active week but stressful and emotional.
I was only about to stay up about 10 hours on Friday. On Saturday I got up at 9am, went back to bed at 10 am and slept until 2:30. I was back out by 9pm again. Sunday I felt better.
But it is not just the physical activity that knocks me out but the emotional also.
I HATE steps! We live in a quad and it is awful. I can not carry anything up the steps or down. We have hand rails on both sides of the steps and it takes me hanging on to both rails to get up.
I hand onto both rails to get down so I do not fall. It stinks. Mind you not all that long ago I could hop up those steps two at a time. irritating!!
I still cannot get my mind around or accept that I am like this. I loved being physically active and could work like a horse. No more.
People look at me and see someone who LOOKS a lot younger than she really is but feels much older than she really is.
I feel like I have to explain myself but it does no good. :-( and I struggle with it. I don't want to go out much because I don't want to run into people who know I have MS and have help coming in.
I am afraid they will walk away wondering what is up. Although I use the ride on carts in the stores when I can. It is amazing how many people need to use them. Especially when you walk in and there are none left for you to use! Oh well.............of subject.sorry
LA
DX'd Feb 2008
LA
This is a very interesting conversation. I think that I have doubted myself because of the doctors I have had to deal with. On one hand I have one neuro saying that I am suffering from "side effects of MS" while on the other hand I have another neuro saying that my "disease is in remission" and that I shouldn't need to see a neurologist for a while. Then on the other hand I have my gp telling me that she knows nothing about MS and she believes strictly in what the neuro that said my disease is in remission and therefore any symptoms must be related to something else and then I have my new neuro that says the original neuro is wrong and that my
"Paratrigeminal Neuralgia is not Paratrigeminal Neuralgia, it is a migraine related to my MS"!
So, if I come across as frustrated and depressed it's probably because if my neurologists don't know what is going on and they can't agree on anything, how in the world am I supposed to believe that this is all real and not just a figment of my imagination.
I admire dyemin for having the guts to come out and actually speak about these doubts that we all have for many different reasons...this has been good for us all I think!
Lots of Hugs,
Rena
"Paratrigeminal Neuralgia is not Paratrigeminal Neuralgia, it is a migraine related to my MS"!
So, if I come across as frustrated and depressed it's probably because if my neurologists don't know what is going on and they can't agree on anything, how in the world am I supposed to believe that this is all real and not just a figment of my imagination.
I admire dyemin for having the guts to come out and actually speak about these doubts that we all have for many different reasons...this has been good for us all I think!
Lots of Hugs,
Rena
Poker, that's workplace harassment. You might want to consider talking to HR or someone else who must remain confidential. They shouldn't be able to do that with impunity...ADA says so.
Bio
Bio
One of my other problems with guilt, is from my co-workers. Every time I leave early or arrive late due from my follow up appointments with my urologist, primary care, or neurologist comments are made about my time off.
This truly frustrates me because we are given 18 days vacation, 5 days personal time, and 14 sick days per calender year. I have NEVER used all my time and most of it rolls over year to year. Since my diagnosis in March 2009 I haven't missed a full day of work! Considering I work 8:30am-5:00pm M-F (same hours as most Dr. offices) I make a conscious effort to schedule my appt.'s either very early or very late. The most time I miss for my appt.'s are 2 hours at a time. I feel their comments are nasty and totally unwarranted! However it does add to my personal guilt
For the most part I have done very well. I still work 40-45 hours a week at my fulltime job and approximately 5 hours a week at my side job. I am NEVER late and NEVER call in sick! I had numerous side effects to Rebif and felt like ****, yet I managed to make it to work every day and still be productive.
This truly frustrates me because we are given 18 days vacation, 5 days personal time, and 14 sick days per calender year. I have NEVER used all my time and most of it rolls over year to year. Since my diagnosis in March 2009 I haven't missed a full day of work! Considering I work 8:30am-5:00pm M-F (same hours as most Dr. offices) I make a conscious effort to schedule my appt.'s either very early or very late. The most time I miss for my appt.'s are 2 hours at a time. I feel their comments are nasty and totally unwarranted! However it does add to my personal guilt
For the most part I have done very well. I still work 40-45 hours a week at my fulltime job and approximately 5 hours a week at my side job. I am NEVER late and NEVER call in sick! I had numerous side effects to Rebif and felt like ****, yet I managed to make it to work every day and still be productive.
I agree this is a good thread about an ongoing problem.
I posted about a recent experience with pushing my limits at http://www.medhelp.org/posts/Multiple-Sclerosis/Pyrrhic-victory/show/1044558. It does seem that there is no way to know what the limits are without testing them sometimes. However, there's not always immediate feedback that you've gone too far, which makes it especially tricky to judge. Was my "long" walk worth the next two days of half napping? Probably not, but I did get some incontrovertible information about my real limitations and a certain perverse satisfaction that I didn't collapse and have to call someone to pick me up.
I'm not sure I think it's heroic to make myself extra miserable all the time and too much pushing could possibly be dangerous. It seems to me that Quix's method of experimentation with the stairs and using situational judgment is about the best we can do. Trial and error.
One of the neuros I saw told me I should channel my frustration into fighting (I am not normally a ball of frustration, but something about neuro appointments just brings that out in me). I got the impression he meant things like exercise and staying as active as you can. In his opinion, the people with MS who don't give up tend to do better (although how he can judge that, I'm not sure).
It's so hard to know if you're giving up too soon, though.
sho
I posted about a recent experience with pushing my limits at http://www.medhelp.org/posts/Multiple-Sclerosis/Pyrrhic-victory/show/1044558. It does seem that there is no way to know what the limits are without testing them sometimes. However, there's not always immediate feedback that you've gone too far, which makes it especially tricky to judge. Was my "long" walk worth the next two days of half napping? Probably not, but I did get some incontrovertible information about my real limitations and a certain perverse satisfaction that I didn't collapse and have to call someone to pick me up.
I'm not sure I think it's heroic to make myself extra miserable all the time and too much pushing could possibly be dangerous. It seems to me that Quix's method of experimentation with the stairs and using situational judgment is about the best we can do. Trial and error.
One of the neuros I saw told me I should channel my frustration into fighting (I am not normally a ball of frustration, but something about neuro appointments just brings that out in me). I got the impression he meant things like exercise and staying as active as you can. In his opinion, the people with MS who don't give up tend to do better (although how he can judge that, I'm not sure).
It's so hard to know if you're giving up too soon, though.
sho
I can relate to so many of the answers given here!!! Bio, that was a better explanation than I could ever find the words to express. And Quixxy, I can really relate to all the things you said about whether it is worth pushing to only suffer later.
I'm packing to move and have to push myself everyday. I'm in the deep South and even indoors it's hard to keep from getting too warm. I'd pushed myself week before last and gotten over heated numerous times during the days. That, plus picking up heavy boxes and such was a big NO NO!!
Well, long story short............spent 7 days with horrible pain and spasms and regret for my actions. Tell myself I WILL NOT do this again, but know full well that I will, because I just cannot let this disease win out and stop me from living.
So, Quixxy, I guess, to me, it is worth pushing and going through the after effects, just to know that I still hold some control over my life. Even though I pay for my overindulgence, I do win for a very short time and accept the fact that I will have to pay the consequences. Sounds crazy, huh?
I do wonder sometimes if I could do more, if I weren't afraid of the consequences and find a little guilt there, but not much.
As far as the people around me thinking I'm faking? Well, the answer is yes 90% of the time, because of the person I used to be. I never backed down to any challenge and worked like a crazy person, so now it's hard for my family to accept that I'm not doing this anymore. Think I spoiled them all....haha
The only time I feel that my family doesn't doubt me is when I have a bad week like I've had this week. There's no faking the misery of a full blown flare, and it cannot be denied.
Usually after I've been this bad, I see understanding, but it eventually goes away until I have my next really visible crisis. I guess it's just human nature and something we have to except, though it is difficult.
This was a really good thread!!!
Hugs to all,
doni
I'm packing to move and have to push myself everyday. I'm in the deep South and even indoors it's hard to keep from getting too warm. I'd pushed myself week before last and gotten over heated numerous times during the days. That, plus picking up heavy boxes and such was a big NO NO!!
Well, long story short............spent 7 days with horrible pain and spasms and regret for my actions. Tell myself I WILL NOT do this again, but know full well that I will, because I just cannot let this disease win out and stop me from living.
So, Quixxy, I guess, to me, it is worth pushing and going through the after effects, just to know that I still hold some control over my life. Even though I pay for my overindulgence, I do win for a very short time and accept the fact that I will have to pay the consequences. Sounds crazy, huh?
I do wonder sometimes if I could do more, if I weren't afraid of the consequences and find a little guilt there, but not much.
As far as the people around me thinking I'm faking? Well, the answer is yes 90% of the time, because of the person I used to be. I never backed down to any challenge and worked like a crazy person, so now it's hard for my family to accept that I'm not doing this anymore. Think I spoiled them all....haha
The only time I feel that my family doesn't doubt me is when I have a bad week like I've had this week. There's no faking the misery of a full blown flare, and it cannot be denied.
Usually after I've been this bad, I see understanding, but it eventually goes away until I have my next really visible crisis. I guess it's just human nature and something we have to except, though it is difficult.
This was a really good thread!!!
Hugs to all,
doni
I just wanted to say great Post...very interesting and I agree with it..
take care everyone
wobbly
dx
take care everyone
wobbly
dx
This sure is an interesting discussion. I think the large majority of us are very accustomed to being introspective and asking ourselves the tough questions. Certainly those who've spent any time in limbloland being told that it's all in our heads have had to wonder about that very issue. We easily can get to the point of doubting ourselves and not believing the evidence of our own bodies.
So getting from that mental state, as time passes, to the practical part of just what we can do and not do is hardly a big leap. We're used to questioning ourselves and considering issues that may never pop into the heads of the typical person. A very old and close friend told me a few years back that I live in my head. That's quite an observation which is probably true, at least for the most part. I don't think it was meant as a compliment, but it wasn't a dig either.
So-- How do I react to my physical limitations? I'm fortunate to be at a time of life when I can just cave, without messing up others' activities, for the most part. I don't feel the pressure that so many here do. For various situations, though, I have to explain that although it's very likely I will be able to do such and such, there's the possibility I just plain won't, as well.
I do get the 'but you look so well' comment quite a lot, because I have no obvious health issues. I realize it's meant as a compliment, and usually just gloss over it. It's not a big deal and I can't help what others think. Sometimes though, I explain a bit about urinary retention, paresthesias, etc. Not a lot, just enough to convey the idea that MS can be very invisible.
Throughout '09 I've had rough patches, some MS-related, some not. In the spring I had to cancel a week's trip to the beach because not only could I not face going, I was so tired I couldn't even face packing. Fortunately this did not much discommode the friend who was also going.
Soon I'll have another looming issue. We are having a big family gathering over a long weekend, and it will take place in the Hudson Valley area of NY State, which is especially beautiful in the fall. The setup calls for a good bit of hiking in a hilly and gorgeous wilderness area I've been to before. My spirit will be willing but my flesh is likely to be weak. Maybe I can try just a shorter jaunt and make do that way. I want to go so much. My vertigo makes standing and walking on slopes kinda scary sometimes. But this is something I'll just have to work through and decide about. If I couldn't keep up with my sister and 2 nieces last year on an ocean boardwalk, what makes me think I can do this?
In general I have found it counterproductive to push myself too far. I'm finally realizing that the price I will inevittably pay is just not worth it. I have a dear friend who has post-polio syndrome, and she has learned exactly how much she can do and how much is too much. She told me she's finding that if she ignores that voice and overdoes things, not only will she be exhausted, but when she recovers she will have lost a little ground that will not be regained.
I'm running on and on, for which I apologize. It's been quite a while since I've done that on the forum, but it seems to be helping me organize my thoughts. I'm going through a very exhausting week for no particular reason, and am sleeping a lot, something I will go back to doing in the next few minutes.
To those I haven't been chatting with lately, I send greetings, hugs, and gallons of delicious, calorie-free ice cream.
ess
So getting from that mental state, as time passes, to the practical part of just what we can do and not do is hardly a big leap. We're used to questioning ourselves and considering issues that may never pop into the heads of the typical person. A very old and close friend told me a few years back that I live in my head. That's quite an observation which is probably true, at least for the most part. I don't think it was meant as a compliment, but it wasn't a dig either.
So-- How do I react to my physical limitations? I'm fortunate to be at a time of life when I can just cave, without messing up others' activities, for the most part. I don't feel the pressure that so many here do. For various situations, though, I have to explain that although it's very likely I will be able to do such and such, there's the possibility I just plain won't, as well.
I do get the 'but you look so well' comment quite a lot, because I have no obvious health issues. I realize it's meant as a compliment, and usually just gloss over it. It's not a big deal and I can't help what others think. Sometimes though, I explain a bit about urinary retention, paresthesias, etc. Not a lot, just enough to convey the idea that MS can be very invisible.
Throughout '09 I've had rough patches, some MS-related, some not. In the spring I had to cancel a week's trip to the beach because not only could I not face going, I was so tired I couldn't even face packing. Fortunately this did not much discommode the friend who was also going.
Soon I'll have another looming issue. We are having a big family gathering over a long weekend, and it will take place in the Hudson Valley area of NY State, which is especially beautiful in the fall. The setup calls for a good bit of hiking in a hilly and gorgeous wilderness area I've been to before. My spirit will be willing but my flesh is likely to be weak. Maybe I can try just a shorter jaunt and make do that way. I want to go so much. My vertigo makes standing and walking on slopes kinda scary sometimes. But this is something I'll just have to work through and decide about. If I couldn't keep up with my sister and 2 nieces last year on an ocean boardwalk, what makes me think I can do this?
In general I have found it counterproductive to push myself too far. I'm finally realizing that the price I will inevittably pay is just not worth it. I have a dear friend who has post-polio syndrome, and she has learned exactly how much she can do and how much is too much. She told me she's finding that if she ignores that voice and overdoes things, not only will she be exhausted, but when she recovers she will have lost a little ground that will not be regained.
I'm running on and on, for which I apologize. It's been quite a while since I've done that on the forum, but it seems to be helping me organize my thoughts. I'm going through a very exhausting week for no particular reason, and am sleeping a lot, something I will go back to doing in the next few minutes.
To those I haven't been chatting with lately, I send greetings, hugs, and gallons of delicious, calorie-free ice cream.
ess
In my family guilt was used by my parents to make us do what they wanted us to do. If we were sick we were told that we were just making it up. So, I have had to do a lot of work on myself over the years with this guilt thing. Most of the time I can shut off the old voices and tell them to take a hike. Sometimes when I am extremely tired or foggy I have a hard time with it.
There are always, in my experience, people who will think that I am faking MS because, as Pastor Dan put it, 'but, you look so good', and because on somedays I can actually walk straight (miracle of miracles) so therefor nothing is wrong with me.
I really have to focus on who I am at moment during this disease process and keep telling myself that it doesn't matter what other people think. It's probably because most people don't understand MS or for that matter most medical conditions. So, that makes it easier to let it go.
I do get tired of dealing with this as you all do and during those times I just have a hard time with any motivation to get up and do anything.
To answer Quix: 'Question for the forum - Do you feel it is noble or proper or good to push beyond and do more than you think you can? Is it worth the days you will feel bad?' Somedays I can and somedays I can't. Somedays I just want to deny MS and do push through everything. I really don't like what follows very much. Sometimes I think that I will push through everything and when I have difficult days that follow that, I say to myself 'so there! You really do have MS!' Other days when I push, nothing much happens. I get really tired of trying to figure it all out.
If we didn't push to get better neurologists-what would happen to us then?
If we didn't keep trying to find a way to feel better-what then?
If we didn't come here to get support-we might just give up. Hugs to you all, Charley
There are always, in my experience, people who will think that I am faking MS because, as Pastor Dan put it, 'but, you look so good', and because on somedays I can actually walk straight (miracle of miracles) so therefor nothing is wrong with me.
I really have to focus on who I am at moment during this disease process and keep telling myself that it doesn't matter what other people think. It's probably because most people don't understand MS or for that matter most medical conditions. So, that makes it easier to let it go.
I do get tired of dealing with this as you all do and during those times I just have a hard time with any motivation to get up and do anything.
To answer Quix: 'Question for the forum - Do you feel it is noble or proper or good to push beyond and do more than you think you can? Is it worth the days you will feel bad?' Somedays I can and somedays I can't. Somedays I just want to deny MS and do push through everything. I really don't like what follows very much. Sometimes I think that I will push through everything and when I have difficult days that follow that, I say to myself 'so there! You really do have MS!' Other days when I push, nothing much happens. I get really tired of trying to figure it all out.
If we didn't push to get better neurologists-what would happen to us then?
If we didn't keep trying to find a way to feel better-what then?
If we didn't come here to get support-we might just give up. Hugs to you all, Charley
I have found that when my depression is acting up or I am overly stressed, I have found that my symptoms are worse and the whole "is this real" or "am I faking" mental game begins.
I also at times have a hard time with acceptance with the fact that I can't always do what I used to be able to do.
When this happens I usually try to fight through it so no one thinks I am "faking". In doing so I usually over exert myself and end up "down and out" :(
I also at times have a hard time with acceptance with the fact that I can't always do what I used to be able to do.
When this happens I usually try to fight through it so no one thinks I am "faking". In doing so I usually over exert myself and end up "down and out" :(
sure. bio expresses it much better than i could have, so i'll leave it at that.
for years, i beat myself up over it. mainly due to the VA doctors countering every symptom i brought up and their suggestions that most things i brought to their attention was either in my head or had a very simple explanation. for those who don't know, the VA has something called "title 38", which in my short version layman's terms means, "the vet is wrong, the VA will do everything to prove the vet wrong, and it is up to the vet to prove otherwise...and the VA will continue to counter until the end ..."
so i always pushed harder, ran, jumped, dived, etc. but, it got to the point that even those things i can't do now. but i have hope i will again ... so i still try to stay in some sense of decent shape.
over the years, i began to pay a price for the pushing. on days i have the feeling of normal energy levels i get back to working out and trying to do things. a false sense of security because i know from experience it is short lived, at least for me now it is, but i'll continue to do it.
every time i see a doctor i sometimes go out of my way to show nothing is wrong but some tests i fail anyways ... hard to fake MRIs, LPs and some neuro exam things.
for years, i beat myself up over it. mainly due to the VA doctors countering every symptom i brought up and their suggestions that most things i brought to their attention was either in my head or had a very simple explanation. for those who don't know, the VA has something called "title 38", which in my short version layman's terms means, "the vet is wrong, the VA will do everything to prove the vet wrong, and it is up to the vet to prove otherwise...and the VA will continue to counter until the end ..."
so i always pushed harder, ran, jumped, dived, etc. but, it got to the point that even those things i can't do now. but i have hope i will again ... so i still try to stay in some sense of decent shape.
over the years, i began to pay a price for the pushing. on days i have the feeling of normal energy levels i get back to working out and trying to do things. a false sense of security because i know from experience it is short lived, at least for me now it is, but i'll continue to do it.
every time i see a doctor i sometimes go out of my way to show nothing is wrong but some tests i fail anyways ... hard to fake MRIs, LPs and some neuro exam things.
Wow, what a great discussion! and Bio hit it spot on!!!
I hit that point where I wonder if I really should try harder to do things or if I am slowly giving up. It is a point just short of hitting the wall when I know for a fact that I can't do more. Part of the problem is knowing how awful I feel when I overdo things and how quickly that point sometimes arrives. I am sure that sometimes I do give up a little early not wanting to be punished for more effort.
Do others think I am faking? - absolutely, especially before my diagnosis.
I no longer wonder if I am exagerating, but do wonder about the giving up early. How do you know it is "early", unless you try and actually do cross the boundary between fatigue and the sick, weak exhaustion that lasts for three days and knocks out any possible activities for the next few days?
I understand the concept of "talking oneself into a wheelchair" but that is truly an unknowable, even by a spouse. When I try to talk myself through the fatigue and do things that my "little voice" advises not to, I do it and sometimes feel rottenly ill. Is that a success or a failure? Has my completion of the activity made me "stronger" or did I just waste energy and end up downgrading my quality of life for a few days?
I am facing this as I now live on the lower level of a house on the hill. It is in a walk-out basement which is 3/4 above ground. I have access to an elevator to get to the main floor where my parents and the main kitchen are. I have found that I do not use the elevator exclusively. My legs are stronger from climbing the stairs more often - usually 3 to 4 times a day. I overdid the stairs during my sister's and my move down. The elevator wasn't quite done so I did the stairs maybe 6 times one day. That caused 2 problems. The first is that my legs gave up. They became so painful that I could barely walk last weekend when I told you I felt so crummy. The second is that twice I almost fell on the stairs because my hands were full.
The upside is that my legs are stronger. This was good to prove to myself that I could strengthen them.
So, now I use the stairs when all I want is to get upstairs. If there is a load I use the elevator. If I start up the stairs and the first stair is difficult for my right leg I use the elevator - I know that I will barely make it up.
Question for the forum - Do you feel it is noble or proper or good to push beyond and do more than you think you can? Is it worth the days you will feel bad?
Quix
I hit that point where I wonder if I really should try harder to do things or if I am slowly giving up. It is a point just short of hitting the wall when I know for a fact that I can't do more. Part of the problem is knowing how awful I feel when I overdo things and how quickly that point sometimes arrives. I am sure that sometimes I do give up a little early not wanting to be punished for more effort.
Do others think I am faking? - absolutely, especially before my diagnosis.
I no longer wonder if I am exagerating, but do wonder about the giving up early. How do you know it is "early", unless you try and actually do cross the boundary between fatigue and the sick, weak exhaustion that lasts for three days and knocks out any possible activities for the next few days?
I understand the concept of "talking oneself into a wheelchair" but that is truly an unknowable, even by a spouse. When I try to talk myself through the fatigue and do things that my "little voice" advises not to, I do it and sometimes feel rottenly ill. Is that a success or a failure? Has my completion of the activity made me "stronger" or did I just waste energy and end up downgrading my quality of life for a few days?
I am facing this as I now live on the lower level of a house on the hill. It is in a walk-out basement which is 3/4 above ground. I have access to an elevator to get to the main floor where my parents and the main kitchen are. I have found that I do not use the elevator exclusively. My legs are stronger from climbing the stairs more often - usually 3 to 4 times a day. I overdid the stairs during my sister's and my move down. The elevator wasn't quite done so I did the stairs maybe 6 times one day. That caused 2 problems. The first is that my legs gave up. They became so painful that I could barely walk last weekend when I told you I felt so crummy. The second is that twice I almost fell on the stairs because my hands were full.
The upside is that my legs are stronger. This was good to prove to myself that I could strengthen them.
So, now I use the stairs when all I want is to get upstairs. If there is a load I use the elevator. If I start up the stairs and the first stair is difficult for my right leg I use the elevator - I know that I will barely make it up.
Question for the forum - Do you feel it is noble or proper or good to push beyond and do more than you think you can? Is it worth the days you will feel bad?
Quix
You hit the nail on the head!
My life has been HARD and I have gotten through it just through my "will of steel" so I am often questioning where that ability to push through went to. I've been in so very many emotionally and physically exhausting situations where I felt like I had to scrape my face or heart off the floor and hold my head high and do what had to be done. How can "I" not muster the energy now when I did all those times before; I must not be trying hard enough. But it's different isn't it? We do the mental emotional "gather" and have to slowly and painfully learn that there is no pushing through this. It's like I've failed myself. I gather and slump, stand and fall, try and fail. I was an awe inspiring, strong, independent, and intelligent woman. People wondered how I did it and I'd just say "I can do ANYTHING and EVERYTHING I set my mind to." It's no wonder old friends have turned from me; the old me might have turned from one of them if they went from strong to weak like I have. But I can't will myself well. I have tried. I feel like my luck has run out or my number is up. Like I have been abandoned by myself.
But none of us has given up. We are here doing the best we can with what we were handed, given. And, me, I believe that at some point each of us made a decision to accept this hardship, this ugly gift. For me my sickness has been the greatest gift and curse of this lifetime. Maybe, just maybe, it was invented super special for those of us who have an amazing strength that we know or knew well and we used it to gain valuable experiences, but knew not how multifaceted we were or could be. For us to just be able to choose life in spite of such hardship and see that we are strong, yes, but in a different way now. Many people they face these trying times so that they can know the strength within. For me, personally, I have been shown the strength of love unconditional. For that reason I would not change directions on the path if I could go back and do so now. I forget, in clouds of thick mental fog, that I accept, so I think it's important to say it now. I accept, not to enable miraculous recovery, not to admit defeat, but becuz I know that I am better for this pain.
Love to you =]
Diemyn
My life has been HARD and I have gotten through it just through my "will of steel" so I am often questioning where that ability to push through went to. I've been in so very many emotionally and physically exhausting situations where I felt like I had to scrape my face or heart off the floor and hold my head high and do what had to be done. How can "I" not muster the energy now when I did all those times before; I must not be trying hard enough. But it's different isn't it? We do the mental emotional "gather" and have to slowly and painfully learn that there is no pushing through this. It's like I've failed myself. I gather and slump, stand and fall, try and fail. I was an awe inspiring, strong, independent, and intelligent woman. People wondered how I did it and I'd just say "I can do ANYTHING and EVERYTHING I set my mind to." It's no wonder old friends have turned from me; the old me might have turned from one of them if they went from strong to weak like I have. But I can't will myself well. I have tried. I feel like my luck has run out or my number is up. Like I have been abandoned by myself.
But none of us has given up. We are here doing the best we can with what we were handed, given. And, me, I believe that at some point each of us made a decision to accept this hardship, this ugly gift. For me my sickness has been the greatest gift and curse of this lifetime. Maybe, just maybe, it was invented super special for those of us who have an amazing strength that we know or knew well and we used it to gain valuable experiences, but knew not how multifaceted we were or could be. For us to just be able to choose life in spite of such hardship and see that we are strong, yes, but in a different way now. Many people they face these trying times so that they can know the strength within. For me, personally, I have been shown the strength of love unconditional. For that reason I would not change directions on the path if I could go back and do so now. I forget, in clouds of thick mental fog, that I accept, so I think it's important to say it now. I accept, not to enable miraculous recovery, not to admit defeat, but becuz I know that I am better for this pain.
Love to you =]
Diemyn
Heather, hello!
No, I don't mean I fake my illness. I don't fake or exaggerate to get out of doing things at all. I have had many of my friends turn from me as I've gotten ill like this. There are people in my family that still look at me skeptically. Maybe because of that I feel more guilt. To look at me I don't look like I can't live a normal life. I'm only 25 and I'm pretty and thin, so I understand how people are confused and I get confused too. I start to think sometimes that I MUST be faking cuz there's just no way so much could be wrong with my body and my mind. But that thought that I'm pretending goes away after I try to cut it out with the weak act, cuz I can't pull myself up by the bootstraps at all anymore. It's wishful thinking on my part, that when I'm alone I'll just be able to do and be what I want, but that's not reality. I hope that clears things up. I was in a major mental fog when I made that first post.
Love to you =]
Diemyn
No, I don't mean I fake my illness. I don't fake or exaggerate to get out of doing things at all. I have had many of my friends turn from me as I've gotten ill like this. There are people in my family that still look at me skeptically. Maybe because of that I feel more guilt. To look at me I don't look like I can't live a normal life. I'm only 25 and I'm pretty and thin, so I understand how people are confused and I get confused too. I start to think sometimes that I MUST be faking cuz there's just no way so much could be wrong with my body and my mind. But that thought that I'm pretending goes away after I try to cut it out with the weak act, cuz I can't pull myself up by the bootstraps at all anymore. It's wishful thinking on my part, that when I'm alone I'll just be able to do and be what I want, but that's not reality. I hope that clears things up. I was in a major mental fog when I made that first post.
Love to you =]
Diemyn
My biggest tendency to wonder about my anxiety causing me more problems - and to think that I can do less than I can - comes when I get very warm. If I start to feel like I'm overheating, I start to feel weaker and as if I'm losing my vision. I always wonder afterwards if I really was experiencing it, or whether it was all just my fears. Sometimes it really seems that the less time I have to conciously think about things, the better I function.
Great thread.
Yes I feel that. I used to love driving my Nissan automatic but now I hardly go out in it, I feel as though my concentration isnt good enough and have lost confidence in driving so now I kind of tell myself its for my own good i cant do it, when I know I could if I really tried.
I was slipping into this routine of talking my self out of doing things but now i have someone working with me who will push me to go out so I cant say to myself no I really cant do this.
Its having an inner strength to keep going and not giving up because once you start listening to that little voice "I cant do this" is when you start to slowly give up.
My friend who has had MS for 9 years now is in a wheelchair. Her husband said to me dont listen to your head, there was no reason why she couldnt keep on walking but she talked herself into a wheelchair.
I thought what an odd thing to say, but now I realise what he means.
I have started to sit in a wheelchair because I am listening somedays to that voice and perhaps I now need to tell it to bog off LOL. I love car booting and would walk around for hours looking for treasures, last week I was taken to a car boot but I talked myself into a wheelchair as I couldnt face walking around.
Thank you for this thread, its helped me a lot this morning to understand a bit what is going on. xxxxxxMariax
Yes I feel that. I used to love driving my Nissan automatic but now I hardly go out in it, I feel as though my concentration isnt good enough and have lost confidence in driving so now I kind of tell myself its for my own good i cant do it, when I know I could if I really tried.
I was slipping into this routine of talking my self out of doing things but now i have someone working with me who will push me to go out so I cant say to myself no I really cant do this.
Its having an inner strength to keep going and not giving up because once you start listening to that little voice "I cant do this" is when you start to slowly give up.
My friend who has had MS for 9 years now is in a wheelchair. Her husband said to me dont listen to your head, there was no reason why she couldnt keep on walking but she talked herself into a wheelchair.
I thought what an odd thing to say, but now I realise what he means.
I have started to sit in a wheelchair because I am listening somedays to that voice and perhaps I now need to tell it to bog off LOL. I love car booting and would walk around for hours looking for treasures, last week I was taken to a car boot but I talked myself into a wheelchair as I couldnt face walking around.
Thank you for this thread, its helped me a lot this morning to understand a bit what is going on. xxxxxxMariax
Bio hit the nail on the head! I just can't believe it myself sometimes!
I do my best, but I know when I've hit the wall. Sometimes my husband and co-workers give me odd looks, because they've known me for so many years and know how strong I was just 2 years ago. I don't think they think I'm faking it.
Now most of the time I walk just fine (though with a rather wide gait), but I got myself a collapsible hiking staff for walks on the beach (loose sand...)and I couldn't believe how much stability it offered me! I took some getting used to, and I was a little self conscious. I'm a little nervous about using it while with friends/relatives because of the "odd looks". I guess we'll all have to get used to it.
Good thread, folks!
Guitar_grrrl
I do my best, but I know when I've hit the wall. Sometimes my husband and co-workers give me odd looks, because they've known me for so many years and know how strong I was just 2 years ago. I don't think they think I'm faking it.
Now most of the time I walk just fine (though with a rather wide gait), but I got myself a collapsible hiking staff for walks on the beach (loose sand...)and I couldn't believe how much stability it offered me! I took some getting used to, and I was a little self conscious. I'm a little nervous about using it while with friends/relatives because of the "odd looks". I guess we'll all have to get used to it.
Good thread, folks!
Guitar_grrrl
Bio put it into words I can relate to. Some days I think it is just ridiculous that I can not run any more or walk in a straight line.
I ahve always been one to take on too much, type A personality, push beyond my limits.
This is so VERY frustrating to me. I beat myself up and question what the doctor will say next.
Will the next appointment be the one where they say I really do NOT have MS and tell me I am just crazy.
I am struggling very much with this issue right now.
LA
I ahve always been one to take on too much, type A personality, push beyond my limits.
This is so VERY frustrating to me. I beat myself up and question what the doctor will say next.
Will the next appointment be the one where they say I really do NOT have MS and tell me I am just crazy.
I am struggling very much with this issue right now.
LA
Very good, Bio - well put.
Sometimes I push myself until I really am unable to do it - that way I know that I've reached my limit.
Sometimes I push myself until I really am unable to do it - that way I know that I've reached my limit.
I think what diemyn means is that on those days when your legs feel like they just can't hold you up any more or your arm is so tired you can't hold it up to type or a million other things related to fatigue or weakness, you may ask yourself, "Can I REALLY not do this? Or am I just not putting in enough effort? Am I just kind of letting myself not be able to do this?" And I think it may be that people who have spent their lives giving all their effort to everything, who have been able historically to find that last little ounce of energy to stay up those last hours and finish that big project or walk that last two miles of 15 or play that final set...they're the ones especially who may be second guessing themselves about weakness or fatigue, about why it is they *can't* dig out that energy like they used to.
And thus, they may ask themselves, "Is this real? Can I *really* not find that energy? Or am I just getting lazy or not trying hard enough?"
At any rate, diemyn, that's how *I* feel all the time. It's hard for me to wrap my mind around the fact that sheer willpower won't push me through that fatigue or weakness the way it used to, so I think I start to second-guess myself that way. If you've relied on willpower when all else fails, and now that fails you, too...you start to wonder if you've just given up or what.
Bio
And thus, they may ask themselves, "Is this real? Can I *really* not find that energy? Or am I just getting lazy or not trying hard enough?"
At any rate, diemyn, that's how *I* feel all the time. It's hard for me to wrap my mind around the fact that sheer willpower won't push me through that fatigue or weakness the way it used to, so I think I start to second-guess myself that way. If you've relied on willpower when all else fails, and now that fails you, too...you start to wonder if you've just given up or what.
Bio
I have most assuredly gotten the sense from certain types of people that they think I might be faking -- or imagining, or exaggerating -- whatever illness this is. I've had depression sometimes make me feel like not doing things that I can probably do if my mind would cooperate, but the issues that I suspect of being MS-related usually just make me angry, and increase my resolve to overcome them.
"But you look so good!"
"But you look so good!"
If am guilty of anything, it's for not telling people how bad I really feel. But I do not fake any symptoms. This MS is too real for me, to have to fake being ill.
Do you mean that you fake weakness or sickness to get out of doing things with your family, when you just aren't feeling up to par? I doubt if you mean that you fake illness in front of your doctor. You're not that type of person, to do so.
Heather
Do you mean that you fake weakness or sickness to get out of doing things with your family, when you just aren't feeling up to par? I doubt if you mean that you fake illness in front of your doctor. You're not that type of person, to do so.
Heather
Really? That is good to hear. =] I thought I was crazy for doing it. Most people in my life don't belive or accept I am sickly so much. It's hard to be around people who don't understand, Esp cuz so few people do. It has been hard for me to accept, but I think for the most part I do, then on stupid stupid days like today I forget that I accept and it just makes me struggle more. Thank you for the support.
Love to you,
Diemyn
Love to you,
Diemyn
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