Rob, Your e-mail really hit home! This is our frustration! No-one can truly understand us. We may look like we're not hurting but...And we each one of us has to do what we have to do! Using a walker has humbled me but I have no choice.I'm 61 yrs. old. I had so many plans for retirement.
I had played tennis for years. now I was going to be able to play all the time.. It does no good to even dwell on it. As they say "deal with it".. "get over it".. and please don't tell us how you really feel!! Robert Pall in an e-mail."Unless someone has walked in our shoes they cannot understand what is in our heads. I may tell my wife my legs are hurting me....what I really mean to say is that my legs are hurting more than what is normal for me....my legs hurt 24/7....... Trudy Who is a born and raised New Yorker who now lives in Virginia. where they don't always understand what I'm saying! :-) _____ From: Robert Pall [mailto:[EMAIL PROTECTED] Sent: Tuesday, May 29, 2007 8:24 AM To: Trudy ; [EMAIL PROTECTED]; [email protected] Subject: RE: [TMIC] Getting Humble... Dear Trudy, You have addressed and brought up my favorite topic! My greatest frustrations and anxieties have been caused by my condition! I have always felt that no one understands what i am going thru. This includes my wife,children,friends and most of my Doctors. In some cases this is because I try not to share with people and in other cases they do not understand. Unless someone has walked in our shoes they cannot understand what is in our heads. I may tell my wife my legs are hurting me....what I really mean to say is that my legs are hurting more than what is normal for me....my legs hurt 24/7....and yet after 10 years she cannot or does not see the difference in what I am saying...I hope I am not looking for sympathy( although that might not hurt every now and then) simply understanding from someone who lives with me and sees me everyday. She doesnt really understand and hopefully never will. I am still terrified of crowds...I am able to walk but a small push or shove can knock me off my feet......vanity keeps me from using a cane...I guess I feel it is bad to be different and a cane makes me different and "less" than normal.......this feeling may be rationally stupid...but I cannot help how I feel and nothing anyone in the group says is going to make me feel differently. Our condition makes our lives far more difficult and not being able to talk about it makes it even harder. I appreciate the group and I know I can talk here...even though our lives and how TM has treated us all very differently makes each of our cases unique. Knowing that even if I try (which I have) to explain how I really feel to my loved ones,friends and co-workers, they will never understand truly frustrates me! But in my experience (10 years) there is nothing we can do about it. Hard as it seems we must accept this reality and accept we can do nothing about it. If anyone thinks I am wrong and or has a better way , than I am all ears....but please do not tell me to have A "POSITIVE ATTITUDE" towards my condition.....I am the one in this group who has always preached staying positive and not giving in to the condition.....and I have not! But that does not lessen the frustrations! I am 59 and have had this condition since one week after my 50th birthday....and I still work full time.....but not one day goes by where I don't long for the old me.....and the older I get I accept that the cure (which is coming) is going to be to late for me.So I just do the best I can everyday.....but that does not make the sadness and frustrations go away...they simply become part of your life. Rob in New Jersey _____ From: Trudy [mailto:[EMAIL PROTECTED] Sent: Sunday, May 27, 2007 5:09 PM To: [EMAIL PROTECTED]; [email protected] Subject: RE: [TMIC] Getting Humble... I would strongly encourage anyone on this list to share with us whatever is going on in their life. I and many others have "vented" to this group. Whether it be about pain, husbands, wives, the children, the way "others" treat us in the stores and restaurants and just life in general. Bernard Pelow certainly shared his frustrations and pain as he watched his daughter go thru a horrendous time in her life. I think he might have been "overwhelmed" by e-mails. but we care... some know a great deal more (Our dear doctor F) .. and some are the caretakers who also need to have a place to "vent" or share or question. it's a bit of a "risk" to put yourself out there. and sometimes you're going to be misunderstood. but who else can really understand how you feel. I am truly sorry to hear that this person is in constant, intense pain. He/She is in my prayers as are all of those on our TM list! Trudy _____ From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Saturday, May 26, 2007 4:37 AM To: [email protected] Subject: [TMIC] Getting Humble... This is a subject that I have not seen debated in the five years I have been a member of this exclusive club of amazing, diverse people brought together by a common problem...TM. I recently received an email from someone who has been on the list quite a while. This person has troubles just like the rest of us and we help one another when we can, but I only tonight found out that they are in extreme pain and at times can only sit for a few seconds at a time. Yet, they take any amount of time they can handle to use their knowledge to educate us and promote dialogue between us, in spite of being racked by pain. This person is one of the "walking wounded" and was, I thought, in pretty good condition. Tonight, I learned that conception has not been true...and I find myself amazed to find the depth of their disability. Now, I am wondering how important it is for us to put on a happy face and keep our infirmities to ourselves rather than getting honest and sharing our limitations with the possibility of connecting with someone else, especially new members in need of knowing that they are not crazy and other people have the same problems that they do? I believe that it is possible to maintain a positive attitude while humbling ourselves enough to show others on the List the true person we are. There are ways to share our pain, frustration, loss, etc. without sounding like a whining baby. Who believes that it is important to put our honest personage out there? Does it help others? Does it help ourselves to talk about things? Or does it serve others better to be stoic about our disease? I'd really like to know... I love you all, Jude T3 to T8, Complete para with no b or b control, and not a lot of hope of ever walking again. "Our present troubles are quite small and won't last very long. Yet they produce for us an immeasurably great Glory that will last forever" 2 Corinthians 4:17 NLT _____ See what's free at AOL.com <http://www.aol.com?ncid=AOLAOF00020000000503> .
