# Newbie but Old Timer



## castshadowstoo (Aug 1, 2003)

Hello everyone! This is Lee(Castshadowstoo) from Italy stopping by. Hope you are all having a relatively good day. I just joined today and want to congratulate you all on being survivors. I believe that we all should have T-shirts with this slogan on the front, "Chronic Pain Survivors". I for one have had IBS since I was a little girl. I have had FM since around 1968. Was officially diagnosed with FM in 1982. I guess I have tried about everything there is to try and still find I need to listen to my body. The best medicine is to have supportive people around me and ones who will not question my pain. That includes doctors. I know that is a hard combination to find and many don't have family to be there for them. I didn't always have that and so I do understand. I have found that in the past five years(I am fifty five) I have seen a change in the pain symptoms. I don't get many breaks in between the flares now. That is a real bummer. I wish someone would have told me way back that this is forever. I think,in my mind, I kept thinking I would grow out of it if I tried to take care of myself. Well, I still have these diseases and I still am surviving. I would love to hear from other "old timers" out there. We belong to a select club, don't you think? Anyway, take care of yourselves. Surround yourself with laughter or music or whatever it is that makes you feel better. Ciao, Ya'll!!!!


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## Susan Purry (Nov 6, 2001)

Hi Lee, welcome to the BB and this forum







Your post seemed very positive, I loved the 'congratulations' for surviving - I'd never thought about it like that before!! I've had M.E/CFS for 13 years in a relapse/remission pattern.


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## M&M (Jan 20, 2002)

Welcome to the forum!


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## castshadowstoo (Aug 1, 2003)

Thanks for the welcome, Susan. I am happy to meet you. I am proud of all of us who have overcome some really trying times and who still continue to battle the diseases that attack our bodies and spirits. It is no small task to get up in the morning and do what we need to do. Some days aren't good days but when I have a "good" day I try to do all that I can. That is all we can do. I try to be there for my friends because I know I could not have survived this past few years without their support. Small accomplishments may be all we are capable of at any given time but that is perfectly OK. We can't compete with those who have unlimited energy no matter how we wish we could. It would be so wonderful if the world would understand that. My own children don't and I don't think there is anything I can say that I haven't already said. I know they love me but are not able to accept their mom has so much pain. It is a defense mechanism. It took me a long, long time to figure that out. It took my husband almost twenty five years to figure it out. He used to avoid being near me because he couldn't deal with it. Now, we face the pain together. He doesn't run away. That offers me such comfort. He rubs my back, brings me cool drinks or ice packs, gives me injections or just listens. I think it took a recent illness and that pain to make him realize we need love and understanding even more when we are feeling insecure. I wish somehow other spouses who haven't figured that out could listen to him. My wish for you all is that you have someone close to you that you can count on and who isn't threatened by illness. Someone whose love is stronger than the pain.Night and God bless, Lee


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## castshadowstoo (Aug 1, 2003)

Thanks, Mrsmason. I hope to get to know all of you better. Your kind welcome has made me feel at home.Take care nowLee


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## M&M (Jan 20, 2002)

I like the way you express yourself. And I love your attitude! Look forward to reading more from you in the future!


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## Ganas (Jun 24, 2003)

I am a young whiper snapper that finds strengh and courage in your message that if this does not get better (Which I fully believe it will) That I can still have an positive attitude and contribute to my life and those around me giving meaning and purpose to what at times just seems hopeless Thanks MMason


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## castshadowstoo (Aug 1, 2003)

Ganas, I hope that my commenting on what the doctors did or didn't tell me when I was diagnosed didn't sound negative. I really didn't mean it to come off that way. I guess a better way to have put it, now that I look back on it, is to say that I might have been able to spend more time on relieving the symptoms and making the best of what life had thrown my way rather than waiting for time to take care of it or doctors to "cure" me. You have to know my story to realize how many years I was shuffled from one doctor to another. None found anything significant but they sure did drain my bank account. In the process I almost lost my mind because they almost had me convinced I was imaging it all. The Rheumy who diagnosed me told me that some people "outgrew" it. Then by the time I had found a really good doctor my body had already gone through at least fourteen years without treatment or medication. I guess we all look back and say what if. I believe that had they known more about Fibromyalgia or IBS then I might have been able to prevent some things but I can't be certain of that. I have read so many letters from people who spend every dime they have and because they don't want to appear like quitters they try unbelievable things to feel better. In most causes the improvement is not what they had expected and they suffer from frquent bouts of depression. I can't fault them one bit. I know we all handle things differently. My theory, and many agree, is that pain is a symptom. That has to be treated as well. As long as one is in a Fibrmyalgia flair or a bad bout of IBS you sure don't feel like exercising or anything else. So if a doctor is refusing to treat "all" the symptoms(the pain, the emotional lows, the fatigue, etc.) we are being shortchanged. I am a fighter and I guess those with chronic pain have to be. I do as much as I can then let my body tell me when it needs rest or medication. I don't compare myself or my treatments to anyone elses because I am not a physician. I am suportive of anyone looking to better their physical health and I certainly applaud those who won't give up. I didn't come to this forum to preach so I am going to leave this here unless someone asks me a question. I want to be here for all of you. I want to be your cheerleader and your friend. For whatever reason we all ended up here I say we are in this together. Ganas, glad you still have your youth. I do envy you that. You sound like a fighter,like me so I can indentify. I'd love for you to share what it is that helps you with your discomfort and what you do to relax. As for me I am a photography nut and drive my hubby nuts because I am forever asking him to stop so I can snap just the right shot. Often we go on window photo safaris. If I can't get out and walk or climb to get the picture I do the best I can from the comfort of my minivan. I do Ok with that. You take care and keep that spirit. It will carry you over many miles of frustration. It will make you a survivor but then I think you are already one!!!!!Ciao,Lee


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