This is from Michael smith known on a number of support groups as Spenser 23. He is fully fused from Ankylosing spondylitis (about 20% of PsA patients have the AS Version - I'm in that particular club). Michael is in the national advisory board , active in fund raising (the motley crue guitar was his project) FWIW once a well known person in the Entertainment world michael still lives in New York City. He hasa a friend stop by his apartment every morning to help him put on his shoes. He stood before the worlds top rheumatologists, pharmacolgists etc this spring who were determining both diagnostic criteria, treatment criteria medication approvals/recommendations to the FDA etc etc. He stood up (as well as he could) on the stage his twisted pain filled body and announced "Just remember I am why you are all here and what we are trying to prevent" it was quite a scene.
You might visit: http://www.spondyville.com/ to understand a bit of his creativity and attitude. The following is a good reminder for us all and a great lesson.
Time for another mini-rant: There's a sign going around the online AS support groups that dramatically states that inside, people with AS feel as if their bodies are trying to kill them.
Personally I don't care for that kind of rhetoric. I think it's dangerous because it pretends to be positive and pro-active, but is actually creating a negative mindset within the context of being a victim.
On the outside, you may not look as if you are sick, but on the inside, you are struggling to continue to be perceived as being normal, and feel as if you are beginning to lose that struggle.
You may be in great pain, you may be suffering tremendously, but please ... and I know this might be a difficult concept for some to grasp ... don't get stuck in the mindset that says because you have a chronic disease, your body has betrayed you.
Your body is not your enemy. Your body is NOT trying to kill you. It has no consciousness other than what you give it. If you continue to feed negative thoughts or buy into the notion that your body is trying to kill you, you will have a much more difficult battle to fight in learning to cope with this disease.
Your pain and suffering is NOT your body punishing you or actively attempting to ruin your life. Your imagination assigns that motive to it in your attempt to understand why this is happening to you.
But Chronic illness is simply the body not working as it should.
There is no curse or retribution for something bad you did. Your body has no ulterior motives. It is simply reacting to a stimulus. The stimulus set off forces over which you may have little or no control. Is it simply luck of the draw or predetermined by genetics? Who knows? It doesn't matter. Who are you is defined by who you are at this moment in time. How you deal with the life you have now, not the life you thought you were supposed to have. This is the life you were supposed to have. Make the most of it.
Instead of creating the mindset that your body is your enemy, do what you can to understand the mechanism of this disease and do what you can to minimize the negative aspects.
Focus your attention on doing what you can to make your life easier and your disease more manageable; Resist the temptation to find blame or create an enemy of your body.
Remember, words are powerful and reinforcing negative thoughts can create mindsets which are hard to break out of."
Of all of the places I need to be P.C I don’t think I should have to watch what I say here. When I let out the feelings I have here in this safe place I don’t want to worry that the wordage I use will be judged. I understand we need to be positive. But sometimes the only place I can say my inner thoughts is here. And sometimees they are not upbeat. Then the miracle that is this group happens. The people who have felt as low as I do reach out and pull me back. I really can’t explain how I feel not alone when that happens. I can only speak for myself but this is the only place I can really speak my fear. Please don’t try to edit that.
I know it is SO EASY to be angry at the monster of an illness that makes us modify our lives, but we need to come to terms with it sooner or later and the fact that there will be always a positive side to everything. "The class is half-full vs. the glass is half-empty".
I call it "mourning my health" and face it as with the different stages of regular mourning. I denied it existed and did not see the dr. in a year because I did not like the diagnosis, cried my heart out, got angry at the illness, myself and other people for not understanding, blamed everyone in the world including my doctors, and now I am happy to be able to see a good day and enjoy the little things in life. Life continues after PsA and I can tolerate the bad days because they strengthen my faith and endurance.
I have often been of the belief that getting at first just a few chronic diseases (now bit more than few) taught me to stop and appreciate each day...be more in the 'present' as some say.
But i have had days where i still think of my body as enemy when it increasing keeps shutting down more and more as i try so hard to keep moving and doing life...despite the pain.
I try to switch my mind set and eventually i can, usually by writing or speaking with a friend, but some days...really bad ones it is so hard to be positive but at least i know it will most likely only last a day. I believe as some said..it is another step in grieving or mourning...and it does keep going on all my life...seems never is finished as my body is constantly changing as i age. I will say this.enjoy your body at 30 and 40's even with disease seems once i passed menopause it has become so much harder to recoup and i get too tired much faster.
Back to going slow and looking at life going on around me...like a sloth!
Hey walking slow.... I know that it feels awful to be censured, I've been there. It really hurts and makes you not wish to come back to the site for fear of reprisal. It is the only truly understanding place out there and in order to keep it that way we have to remember not to say something stupid and take it out on someone here like I did a few weeks ago just because I was angry with someone not even associated with or allowed to look at this site on my computer. This place is my only hope of finding understanding and I said something very hurtful to someone here who has stood by and answered all of my questions with thoughtfulness and patience.( you know who you are) I would not have received that response from outside society, they would have written me off entirely.
Feel free to let it out and speak your peace, you need to, after all it is only a chat. It isn't as if we are in the board room or anything. Everyone gets angry, this crap makes you angry-- especially if you are itchy!!!!! Seems like it all blows over and everyone is here for you no matter what. Keep it coming, we'll deal with it and some day you will deal with one of our rants :) Everything balances itself out given enough time....xxxxxx
Well you do have to be careful its not being PC, its being polite. You don't always have to upbeat or positive and everybody has a low time - without exception. We have an area to express those feelings without reservation just for just those times called Emotional Support. Sybil is correct the emphasis on both acceptance and defiance that is one of the hallmarks of this site. We all aware we are all in different stages of dealing with our disease.
There are "support sites" that are "all misery all the time."You can report a success in treatment a little victory (or a big victory) and be assured the next six posts will be "It didn't work for me, it probably won't work for you for very long. But you have it lucky my Dr said mine is the worst case he has ever seen" (It appears to me some of these docs don't have much experience) This isn't one of those boards. Here we consider that hijacking. It slips from time to time from all of us. The tendency of the mod group is to let it go unless its a "serial offender" We don't know the effect of our own words sometimes, and folks slip up thats why we we have a moderated board.
Were Michael Smith a member here, there would be some moderation going on, but hes not. Instead its an opportunity to remind folks again that your feelings are important and welcome, we will do our best to support them -s o long as they are in the right place. Remember we also hear (and with greater regularity) from people who don't feel comfortable posting about their emphasis on both acceptance and defiance as well as victories as they are afraid of the response from suzie downers.
walking slow said:
Of all of the places I need to be P.C I don't think I should have to watch what I say here. When I let out the feelings I have here in this safe place I don't want to worry that the wordage I use will be judged. I understand we need to be positive. But sometimes the only place I can say my inner thoughts is here. And sometimees they are not upbeat. Then the miracle that is this group happens. The people who have felt as low as I do reach out and pull me back. I really can't explain how I feel not alone when that happens. I can only speak for myself but this is the only place I can really speak my fear. Please don't try to edit that.
sybil said:
I'm with you WS. I think the emphasis on both acceptance and defiance that is one of the hallmarks of this site makes it uniquely helpful & keeps it lively. But that attitude can take time to develop. I'd hate to think that anyone who is enduring the more 'down' stages or phases feels that they have to keep shtum.
Sybil, I look forward to your every post. You always make me smile............ My Grandfather was from England -England. His sense of humor was yours....
