Path: utzoo!utgpu!news-server.csri.toronto.edu!cs.utexas.edu!yale!bunker!hcap!hnews!105!14.0!Adrienne.Barhydt From: Adrienne.Barhydt@p0.f14.n105.z1.fidonet.org (Adrienne Barhydt) Newsgroups: misc.handicap Subject: Re: MS Message-ID: <14199@bunker.UUCP> Date: 18 Sep 90 02:32:37 GMT Sender: wtm@bunker.UUCP Reply-To: Adrienne.Barhydt@p0.f14.n105.z1.fidonet.org Distribution: misc Organization: FidoNet node 1:105/14.0 - Busker's Boneyard, Portland OR Lines: 137 Approved: wtm@bunker.UUCP Index Number: 10424 Hi Aaron, It seems like a lot of what I've been going through the last few months and am still working on now would be relevant to you also. I'm finding it kind of difficult to slow down my mind and focus on what I want to say. I had this same problem writing to a friend last week and she wrote back and said it's because it is all still happening. It's not quite ready to be in words yet. Anyhow, I think I can get a few things said. >I have been told by neurologist and therpaist I have the >real need to limit activites becasue of difficulties that ^^^^^^^^^^^^^^^^^^^^^^^^^^^^^ >arise when I keep on trucking and yet even people that know >me respond as if I am "babying" myself and then I try to ask >like the ABLEDs and I get in trouble. I have had to recognize and believe and accept that the physical changes happening to me are real. The limitations are real. I used to be so proud and say I'd never push myself to my limits, I knew how to pace myself. Wrong-o! I was pacing myself to the point that every single day I squeezed out every last little bit of energy I had. I was not taking care of myself. I wasn't doing things the easiest way possible either, I was wasting a good part of the limited energy I had. I feel sort of like I'm going out on a limb to say things about your friends when I don't know them and scarcely know you but it seems to me like they are more of a hindrance then a help. I feel like I want to knock their heads together and say "wake up! Aaron's disabilities are real. He is not babying himself. He is trying hard to take care of himself and he needs your support not put-downs." Realistically speaking, I don't know what to suggest that you do about their attitude. I have not run into the "But you look so well" comments. I think that is for two reasons. One is that for a good stretch of time I was cutting myself off from contact with people - there wasn't much of anyone to say it. Two, when I go out, I can only go out when I am at my best. I work four mornings a week. I work first thing in the day so that's where the best of my energy goes. Nobody sees me when I fall into bed when I get home from work. Nobody sees that I go to bed at 9:30 on work nights. When I go out I have to make sure I will have enough energy to get myself back home. I went to the mall last Saturday and it was a battle to get myself to quit and go home. I stayed a little longer than I should have, but I left soon enough. So anybody who saw me zipping around on my 3-wheel electric scooter saw me cheery and healthy looking. Oh, there is a third reason - luck, just plain luck. >I have been really scared lately that if I stop pushing I am >just not going to be able to move anymore. everything has >gottent o be a major effort. as I know the feeling. I sat down at the computer about two hours ago and realized immediately that I left some documentation I need in the family room, two rooms away. I haven't got up to get it yet. That's too far to walk for something I'd like to have but don't absolutely need right now. Wanna hear something really scary? I am afraid that if we keep on pushing we'll get to where we can't move anymore even sooner. I think the key to it is to redefine push and to learn the right way to do it. I went for physical therapy and occupational therapy and learned a lot. I just started seeing a physiatrist (rehabilitation doctor) for knee pain and she is sending me for a new brace and more physical therapy to learn a better way to walk with the new brace. It's clear to me that my neurologist, physiatrist, physical therapist and occupational therapist all want to keep me mobile and independent. They are teaching me better ways to do all the things that I do that are in any way physical. The OT showed me a one-handed electric can opener. No more using that crazy manual thing that I had to just wail on with both hands and hope that I wouldn't pinch the flesh between thumb and forefinger trying to get it to puncture the stupid can. The PT taught me among other things how to get out of bed and how to get up off the floor. I do a stretching program twice a day that the PT set up for me and some very light leg exercises on an energy available basis. Yes, you do have to keep using muscles and keep them stretched but learn how from someone who knows the right way so you don't injure yourself and don't overdo it. Really, the basis for all the changes I am in the process of making has been a large change in attitude in myself. I have been going for counseling for a few months and I am coming to grips with reality. This disease is doing bad things to my body. That affects EVERY aspect of my life. It affects every little thing I do. But I am still me. I have all the interests I ever had, all the likes and dislikes. I don't have the same physical capabilities. I am learning to accept myself as I am. I am sorting out what is most important to me. I can't do anywhere near as much as I used to but I can still accomplish important things. Using a cane is a drag but walking without it is next to impossible, so I use it. But even with the cane I can't walk far enough to work or shop or go to the library or the park or to a concert, so then I use my scooter. They are tools. They help me do things that I could not do otherwise. But I began using them having learned societies attitudes towards them. I am not all the way past those attitudes yet but it is very very clear to me that I cannot function without them. I used to not understand it when my grandmother didn't want to use a hearing aid. I could only look at it pragmatically and ask why wouldn't someone use something that would let them hear. Now I understand more of the emotional response to such things. I am experiencing the loss that is made so much more vivid as I sit out in the world on that infernal, wonderful machine. I've done some grieving for the losses and I am sure that I will do more but getting through the grieving makes the acceptance possible and the acceptance makes so much more possible. I've babbled on for long enough. I hope that some of this will help you. Please ask more questions if you have them. And tell me also what works for you. I am learning so much and there is so much more still to learn. Take it easy....but take it! Adrienne P.S. You've mentioned in several messages that you are shy. I am very shy too. This is a great place for shy people. I find it possible to communicate here in writing in ways that I just can't do face to face. So, stick around, okay? -A -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!105!14.0!Adrienne.Barhydt Internet: Adrienne.Barhydt@p0.f14.n105.z1.fidonet.org