Adrienne.Barhydt@p0.f14.n105.z1.fidonet.org (Adrienne Barhydt) (07/19/90)
Index Number: 9315 In a lot of ways my life seems to be on a similar course to yours. Perhaps we can help each other some. I have MS. I don't have the famous kind that everybody else seems to have with remissions and good days and bad days; I have the kind that just gets steadily worse. So everytime it seems like I am getting some where with accepting my disabilities, or at least adjusting to them, I find my disabilities have gotten worse. > I don't know what to think. On the one hand, I *KNOW* (on > the intellectual plane) that I *AM* disabled, in several ways. > But I cannot seem to *ACCEPT* my disabilities on any plane, > including the intellectual. Denial is not uncommon, so I > suppose I am not alone. I know I am disabled. The acceptance part is harder. Sometimes despite the clarity of the knowledge and a body that tells me again and again and again that I just can't do many things, it is still hard to believe it on some deeper level. But I am beginning to get somewhere with the believing part of it. Maybe acceptance is next. I started going for some counselling recently. That is helping. I know in a lot of situations it helps me to get feedback from others. Having (perceiving) an accurate self-image can be difficult. My focus tends to be on what I am not doing and what I can not do. I am learning to give myself credit for what I am doing and the great amount of effort it takes. A large part of this is beginning to recognize just how much effort simple things really take. My counsellor said I use more energy just getting started in the morning than most people use in an entire work day. I had to let that kind of soak in for a while, but you know what? She's right. I know that from experience, my own experience. > All that having been said (whined?), I believe my single > GREATEST disABILITY is that I have virtually *NO* self-esteem. My self-esteem is pretty much intact. But I can see how having a problem with self-esteem could make acceptance of your disabilities that much harder. I've learned from experience that when I start feeling worthless I need to look a little deeper for what's really going on. Usually it's a clue that I am depressed about something. Especially lately, being sad and grieving for loses is not unusual for me, but I am rarely depressed. >> The problem for me is that I think I have to learn to >> *ACCEPT* my disabilities before I can TRULY begin to >> overcome them. I am constantly getting myself into trouble >> through my lack of acceptance. Just the other day, I was >> visting a friend, and got involved in play with his >> children. Before I realized what I was doing, I had his 11 >> year old daughter on my shoulders. My back is *KILLING* me >> by way of "punishment," and I have no one to blame but >> myself. That is a very difficult adjustment. It really stinks to have to think about it before everything you do to figure out what the impact is going to be. I get extremely fatigued and uncoordinated from just a tiny bit of walking. I use a 3-wheel electric scooter outside the house, but it's more convenient to be on my feet inside. But I need to think about every step I take before I take it cause I can wipe myself out for the day before I'm even dressed in the morning if I'm not careful. Yes, I think lack of acceptance is part of it, but for me there is more. I simply resent having to do this. It is my reality and it is a drag, to put it mildly. (Is my anger showing?) Will it ever become natural? I can't see how. > Why am I whining and bitching to you people? Probably > because it's "safe" for me to do so. I am really hoping that this is a safe place to be honest. I must say though, that I don't see what you are saying as whining and bitching. > My back is *KILLING* me by way of "punishment," and I have no > one to blame but myself. Punishment, why punishment? You've done nothing bad. You made a mistake. I make the same sort of mistake all the time. I hope I am learning to stop and think and make a decision that won't result in me hurting myself. Same thing for blame. Why blame yourself for anything? I am angry with my situation. It stinks, to put it mildly. But one thing I know for sure, it ain't my fault. -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!105!14.0!Adrienne.Barhydt Internet: Adrienne.Barhydt@p0.f14.n105.z1.fidonet.org
Greg.See-Kee@f631.n712.z3.fidonet.org (Greg See-Kee) (08/10/90)
Index Number: 9680 >>> I am constantly getting myself into trouble >>> through my lack of acceptance. Yes, same here. Not only that I over-estimate what I can handle, but that that other "Light & Bright" non-accepters refuse to believe that I am in fact physically etc impaired. AB> I get extremely fatigued and AB> uncoordinated from just a tiny bit of walking. No-one seems to mention this - WEIGHT-GAIN! So my lack of exercise should mean that I need to eat less food. But everyone, including myself, cannot adjust to the new eating restrictions. I'm still not sure whether or not the extra effort to move my 11 stone (used to be 9 stone) about is burning up more energy. The weight-gain or my disability creates more fatigue. The joys of being physical are removed from me. Plus my old clothes no longer fit. Even my work-overalls & boots are useless, because I also lack the physical prowess to use these clothes the way they were meant to be used. >> Why am I whining and bitching to you people? Probably >> because it's "safe" for me to do so. AB> I must say though, that I don't see what you are saying as AB> whining and bitching. The "nice" Light_&_Bright brigade don't like any suggestion that full-on reality exists. Most people are so scared of reality, that they will do anything & everything to deny reality. I don't think anything is wrong in saying "The Emperor has no clothes on!" -- if that is reality from the way you see it. I remember how Sigmund Freud was publicly forced to deny the existence of Incest. One day, "Freedom of Speech" will become a reality. And describing our reality will be allowed - one day. >> and I have no >> one to blame but myself. AB> You AB> made a mistake. I make the same sort of mistake all the time. In my world, it is an undeclared sin to admit to being less than perfect. I'm glad that Australia is really a Christian nation, where it is ok to admit to sin, to not be perfect. Mistakes are mistakes, but the person is ok. Sins are sins, but the sinner is ok. Sometimes sinners are imprisoned/ fined/ etc, but in Australia, they are not denied the right to life. AB> But one thing I know for sure, it ain't my fault. In my case, the lawyers were very keen to "blame someone!". My attitude was, privately: "So what? I've got the rest of my life to try & do something sensible now. And because I'm a volunteer to this life, I have now to decide how else I am going to volunteer the rest of my life." After my years with the Australian Army, I found that "conscipts" were unreliable people. The best people were the volunteers. So I volunteered for Vietnam, and I am now volunteering to live out my remaining life. ... Xpress Yourself! -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!3!712!631!Greg.See-Kee Internet: Greg.See-Kee@f631.n712.z3.fidonet.org
Adrienne.Barhydt@f778.n115.z1.fidonet.org (Adrienne Barhydt) (08/10/90)
Index Number: 9703
AB>> I have the kind
AB>> that just gets steadily worse. So everytime it seems like I am
AB>> getting some where with accepting my disabilities, or at least
AB>> adjusting to them, I find my disabilities have gotten worse.
GS> it like the normal process of ageing, but several times
GS> the normal rate?
I am sure there are similarities. My next door neighbor was
approaching 90 and told me how she can't take care of the house
anymore, etc. etc. I was going through the same sort of thing
but we couldn't discuss it - she didn't like to wear her hearing
aid and tended to talk at me rather than with me. It seems to
me though, that going through that at age 90 must be very
different than going through it at age 40!
AB>> My
AB>> focus tends to be on what I am not doing and what I can not
AB>> do.
GS> It is probably the first step in self-definition: defining
GS> what is NOT-ME. I found it much easier to strongly,
GS> emotionally (without words, but by actions alone), to
GS> protest against the significant things in my life. I
GS> knew that I was perhaps a quarter of the person I used to
^^^^^^^^^^^^^^^^^^^^^^^^^
GS> be. So discarding the first half of who I used to be was
GS> fairly easy. It really was a re-run of my teenage years,
GS> where I separated myself from my parents by "rebelling"
GS> from what I thought "their restrictions" were supposed to
GS be.
Perhaps it is your wording that I disagree with rather
than the concept. I used to be able to dead-lift 160
pounds. Now it sometimes take a similar effort to get my
body out of bed. My physical capacity is a small, small
fraction of what it used to be but I would not say *I am*
that small fraction of what I used to be. Because of my
physical limitations my goals must be severely cut back.
Although fortunately I am able to do the same type of work
that I used to do, half-time instead of full-time, my
career in the sense of the goals I had for myself is over,
but I am not less of a person because of that. The
challenges are different and if I look at them in contrast
to what they used to be they seem puny indeed. But there
is no reason to look at them that way. What exists is
now.
--
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