Aa
trying NOT to talk and/or mention my sx.
I don't know about any of you, but I have been working on not talking about anything regarding my neuro issues for at least the past 3 months. I work at ignoring my own symptoms while being careful not to: wince, fall, tip-over, say "Oh God that hurts, "I can't see the floor", "I can't tell how far away you are" or even discuss doctor appointments or tests. I take my medicine as quietly as I can and work around the house.
Why"
I sometimes think even my family thinks I am nuts. Sometimes I think that I am nuts too. I feel embarrassed and stupid that I should be able to handle everything better. Sometimes a family member says "why haven't you done ____yet?", to which I respond: "I do as much as I can but I haven't been able to get that done yet. I feel like other family members would be a better patient than I.
It's not that my tests come back negative either, it's that they haven't yet been conclusive.
So, like all of you I am here in limboland not knowing where I fit in. I want to know what this is so I can fight it with the help of a doctor(s).
I just want to stop talking about it or even thinking about it. How do you deal with this stuff? What do you think"
Thanks!
Why"
I sometimes think even my family thinks I am nuts. Sometimes I think that I am nuts too. I feel embarrassed and stupid that I should be able to handle everything better. Sometimes a family member says "why haven't you done ____yet?", to which I respond: "I do as much as I can but I haven't been able to get that done yet. I feel like other family members would be a better patient than I.
It's not that my tests come back negative either, it's that they haven't yet been conclusive.
So, like all of you I am here in limboland not knowing where I fit in. I want to know what this is so I can fight it with the help of a doctor(s).
I just want to stop talking about it or even thinking about it. How do you deal with this stuff? What do you think"
Thanks!
a bit of history: my neuro suspects that i might have a progressive myoclonic epilepsy called lafora disease and if he's right about that i have approximately 10 more years on this earth. the only way to confirm it would to have a brain biopsy done and he doesn't wanna do that just yet until he gets more evidence that points to the disease (amazing how they always want you to get worse before they decide that it's time to try and cure you) he told me this back in march and i have kept a positive attitude til recently when i've just been feeling down and out and i've feeling pretty negative as well. they are treating one of the symptoms, the myoclonus, with medication but everything else (speech problems, memory loss, rapidly deteriorating eyesight, headaches, tremors) is left to just manifest itself without anything being done about it. so lately i've had this whole attitude of "what if i really do only have 10 years left, why am i wasting my time doing what i am doing now? " i've had this whole bucket list since i was back in high school and at the moment that keeps on popping into mind whenever i'm not busy with something else.
so i decided, in light of my new attitude towards life, it was time to try speak about what's going on to people that are close to me.
- my parents are crossed off that list immediately. my parents are divorced and i live with my dad. he and i have never had a parent child relationship, not for my lack of trying, he literally is just there to provide the bread on the table. my stepmom is literally the wicked witch of the west so there is no way i'm going to her. i've tried my mom in the past but she really doesn't understand what i'm actually trying to get through to her no matter how hard i try. my stepdad just doesn't feature in this picture.
- i'm tired of trying to speak to certain friends about this because they just brush off my worries or they make me the punchline of every single one of their jokes and that really is frustrating and it actually p*sses me off as well
- since this started last year, i have had a lecturer that i have been kinda close to who i can go chat to. the thing is that they're lecturers and they firstly only have limited time to listen to your problems and secondly you can only open up to them to a certain extent, i don't think it would be appropriate to share everything that's going on in your life with them. i must admit though, they have given me the best advice regarding studies and just life in general
i made this friend at the beginning of the year and since then we have become pretty close so i thought that maybe it would be a good idea but i couldn't have been more mistaken. when i tried to speak to him he told me that i'm being stupid and my ideas are absolutely ridiculous. i was looking for some support and i was just met with animosity and a plain disregard for my worries. it's incidences like this that reminds me that there's no point in trying to speak to "normal" people because they never understand what you are actually going through. so until i have proper answers where i can shove under their noses and say "i told you so", i'll just stick to forums like this and my virtual friends where i have the understanding and support that is needed to get through something like this
so i decided, in light of my new attitude towards life, it was time to try speak about what's going on to people that are close to me.
- my parents are crossed off that list immediately. my parents are divorced and i live with my dad. he and i have never had a parent child relationship, not for my lack of trying, he literally is just there to provide the bread on the table. my stepmom is literally the wicked witch of the west so there is no way i'm going to her. i've tried my mom in the past but she really doesn't understand what i'm actually trying to get through to her no matter how hard i try. my stepdad just doesn't feature in this picture.
- i'm tired of trying to speak to certain friends about this because they just brush off my worries or they make me the punchline of every single one of their jokes and that really is frustrating and it actually p*sses me off as well
- since this started last year, i have had a lecturer that i have been kinda close to who i can go chat to. the thing is that they're lecturers and they firstly only have limited time to listen to your problems and secondly you can only open up to them to a certain extent, i don't think it would be appropriate to share everything that's going on in your life with them. i must admit though, they have given me the best advice regarding studies and just life in general
i made this friend at the beginning of the year and since then we have become pretty close so i thought that maybe it would be a good idea but i couldn't have been more mistaken. when i tried to speak to him he told me that i'm being stupid and my ideas are absolutely ridiculous. i was looking for some support and i was just met with animosity and a plain disregard for my worries. it's incidences like this that reminds me that there's no point in trying to speak to "normal" people because they never understand what you are actually going through. so until i have proper answers where i can shove under their noses and say "i told you so", i'll just stick to forums like this and my virtual friends where i have the understanding and support that is needed to get through something like this
You're so welcome!! This a good thread with lots of great people as you already know. You are in good company. Don't let your family get in the way of you getting help and a diagnosis!!!
You are very important!!!
((((Hugs))))
Red
You are very important!!!
((((Hugs))))
Red
thank you, Lois, for finding this thread for me.
It hurts to know that so many of us are treated this way by our friends and family.
the only person that knows is my husband, and I try not to even say anything anymore..if I tell him I don't feel well, he actually gets angry.
He thinks I make myself sick to get attention or so I do not have to deak with other problems we have.
It hurts to know that so many of us are treated this way by our friends and family.
the only person that knows is my husband, and I try not to even say anything anymore..if I tell him I don't feel well, he actually gets angry.
He thinks I make myself sick to get attention or so I do not have to deak with other problems we have.
Hi Lois,
Thanks for your encouragement!
I'm really not totally alone; I just feel that way sometimes. My husband, parents, and youngest son (19) are very supportive. Its just that I am tired of having negative replies when they ask how I'm are doing. I don't like to be this way. I'd rather not have to deal with these troubling, painful problems at all and I would ignore them if I could. I'm finding that I just don't tell my husband all that much about how my day really was. He's a bigger worrier than I am, and, like a typical male, would like to solve the problem. His way of doing that is by trying to tell me what to do. Arrrggghhhh..... You are so right that isolation is not good. For me, some of it is self-imposed because I really don't want to share this with friends. Some of it is because I'm not supposed to drive. I do drive some anyway. (I'm not so good at following the rules.)
A good PCP? I guess there are some out there. Oh, cynical me. I like my neuro, she just doesn't read my file or test results, or prepare in any way to see me. So, part of my office visit is comprised of watching her speed read bottom-line results. My GP is an internal med guy -- haven't seen him since I left the hospital. I'll go back to him after I get to a rheumatoid doc.
I'm not working right now; that's a huge source of stress for me. When I'm honest with myself, I know that I'm not well enough for a full-time job. But, maybe part-time? Or, freelance? On the positive side, I've been helping a relative with a big project she's trying to get. I wasn't sure that I would be capable of the type of thinking and writing this kind of project requires. You just don't know how relieved I am that my brain continues to come back online!
Hey sammxxx,
I'm trying to remember who said, "I reject your reality, and substitute my own." I'm thinking it was a character on a TV show or movie. So, that in itself would be a reality bender. Do we attribute the quotation to the writer or the character?
--faithHGL
Thanks for your encouragement!
I'm really not totally alone; I just feel that way sometimes. My husband, parents, and youngest son (19) are very supportive. Its just that I am tired of having negative replies when they ask how I'm are doing. I don't like to be this way. I'd rather not have to deal with these troubling, painful problems at all and I would ignore them if I could. I'm finding that I just don't tell my husband all that much about how my day really was. He's a bigger worrier than I am, and, like a typical male, would like to solve the problem. His way of doing that is by trying to tell me what to do. Arrrggghhhh..... You are so right that isolation is not good. For me, some of it is self-imposed because I really don't want to share this with friends. Some of it is because I'm not supposed to drive. I do drive some anyway. (I'm not so good at following the rules.)
A good PCP? I guess there are some out there. Oh, cynical me. I like my neuro, she just doesn't read my file or test results, or prepare in any way to see me. So, part of my office visit is comprised of watching her speed read bottom-line results. My GP is an internal med guy -- haven't seen him since I left the hospital. I'll go back to him after I get to a rheumatoid doc.
I'm not working right now; that's a huge source of stress for me. When I'm honest with myself, I know that I'm not well enough for a full-time job. But, maybe part-time? Or, freelance? On the positive side, I've been helping a relative with a big project she's trying to get. I wasn't sure that I would be capable of the type of thinking and writing this kind of project requires. You just don't know how relieved I am that my brain continues to come back online!
Hey sammxxx,
I'm trying to remember who said, "I reject your reality, and substitute my own." I'm thinking it was a character on a TV show or movie. So, that in itself would be a reality bender. Do we attribute the quotation to the writer or the character?
--faithHGL
;-) Wasn't it Woody Allen who said that 'turrning up is 99% of success'??
I'm so glad we have this place - as you say Red, isolation is not good. Now we know there are many more good people out here suffering the same sorts of things. I truly thought it was just me until I too started hunting around the interwebby a year or so ago.
Yes, I do think that we have just cause to be proud of the way we graciously bear our illnesses in the face of sometimes quite abysmal medical responses and widespread dismissals. Go Limbolanders!!
The best thing is that we have each other...we know what we go through and are humane and kind to each other here. It goes a long way to restoring my faith in human beings. Of course though, it would be great just to have a proper dx and be able to get proper treatment and just get on with life....
PS faithHGL - I too know the dreadful situation where doctors' lacksadaisical failure to dx puts you in a situation where you have to bend the reality in order to get a job or benefits or whatever. I absolutely loathe that doctors have put me in this position - and made a dishonest woman out of me (even if only by omission).
sammxxx
I'm so glad we have this place - as you say Red, isolation is not good. Now we know there are many more good people out here suffering the same sorts of things. I truly thought it was just me until I too started hunting around the interwebby a year or so ago.
Yes, I do think that we have just cause to be proud of the way we graciously bear our illnesses in the face of sometimes quite abysmal medical responses and widespread dismissals. Go Limbolanders!!
The best thing is that we have each other...we know what we go through and are humane and kind to each other here. It goes a long way to restoring my faith in human beings. Of course though, it would be great just to have a proper dx and be able to get proper treatment and just get on with life....
PS faithHGL - I too know the dreadful situation where doctors' lacksadaisical failure to dx puts you in a situation where you have to bend the reality in order to get a job or benefits or whatever. I absolutely loathe that doctors have put me in this position - and made a dishonest woman out of me (even if only by omission).
sammxxx
Thank you so much for reponding to this thread.
I am so sorry to hear of all the pain that you are in!! It really is so horribly painful and so often we feel alone. Others really don't get it; they can't and sometimes I think they don't want to. I think it is scary to them, they don't want to face their own mortality. They are just plain terrified.
YOU ARE NOT ALONE!!! We are here with you. Many of us here are up all night long, unable to sleep in pain. It's not good for you to be islolated. Everyone here is so supportive and kind. Is there anyone there that cares about what you are going through? Do you have a good PCP that is helping you find answers?
Do you have to work right now? It sounds like you are too sick. As far as looking for employment, I wouldn't tell them what is happening. It's just too risky, plus you may need their insurance.
As far as the driving after the spinal tap---I'm a pretty tough and also stubborn. Those can be good qualities and they can also be obstacles.
Yes, it is a huge deal that we make it through the day. I think 'showing up' is 90% of the battle. Just remember that we are all in this together and when you have to go through something really tough---think of us---we are behind you. We are cheering you on!! You also are very honest!!
We will make it somehow!
lois
I am so sorry to hear of all the pain that you are in!! It really is so horribly painful and so often we feel alone. Others really don't get it; they can't and sometimes I think they don't want to. I think it is scary to them, they don't want to face their own mortality. They are just plain terrified.
YOU ARE NOT ALONE!!! We are here with you. Many of us here are up all night long, unable to sleep in pain. It's not good for you to be islolated. Everyone here is so supportive and kind. Is there anyone there that cares about what you are going through? Do you have a good PCP that is helping you find answers?
Do you have to work right now? It sounds like you are too sick. As far as looking for employment, I wouldn't tell them what is happening. It's just too risky, plus you may need their insurance.
As far as the driving after the spinal tap---I'm a pretty tough and also stubborn. Those can be good qualities and they can also be obstacles.
Yes, it is a huge deal that we make it through the day. I think 'showing up' is 90% of the battle. Just remember that we are all in this together and when you have to go through something really tough---think of us---we are behind you. We are cheering you on!! You also are very honest!!
We will make it somehow!
lois
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