I believe these forms are for positive thinking people should keep their negative thoughts to themselves
No negativity: I believe these forms are... - My MSAA Community
No negativity
Written by
Jackjosh
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38 Replies
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ur correct about that
I can't promise
I agree with you I am here to get wisdom from others and support and to share my experiences. I might be having a bad day but I am here to get help though it. I don't know what negative post you saw but I think that if someone is feeling very negative about something they might look at getting some professional help then putting up on a forum like this
I am 33 and may I ask whenand what did u do for a living?
I have not worked since before my diagnosis. I was diagnosed February 1993 and when I did work I worked food service
I owned my own business in construction and remodeling until I was unable. Found my own work and relied on my own drive and personality to build something from scratch, and did this with m.s. So seeking help is an afterthought, now I'm trying to survive and exist in this world of selfexorbtion. So I will continue to put up what and when I'm able and insecurities and premonitions about what my thoughts are doing to others may need to stop and think!
I don't think expressing how you are doing with what us going on with your MS is negative but if you are talking badly about what someone posts or maybe talking bad about some one that is what I consider negative. To me there are other places for that. Or maybe get help from a professional counselor
I believe this site is here for anyone to be able to post how they are feeling and what’s going on in there life be it good or bad. It’s a great place to vent and get help from others that have been in the same spot sometime in there life. Staying strong and positive is the way to live but not everyone is there yet especially new comers. Without being able to release your thoughts you can become stuck there. This is a great place to share in hope 👍🙏😉😊 Ken 🐾🐾
Out of many of these "arguments" / constructive, speculative witch-hunts that I've heard in a long forever!!! It has apparently been made impossible for some to wrap their head around anything other than the old " thats my story and i dont need to edit!!! I will be me and not try to change any of you. P.S. insane how long it takes people to understand how exactly the mechanisms for idgaf actually works! Lol
in reply to Kenu
Agreed. My understanding has been that this open forum is just that - it is open for us to share with each other our good days and our bad days, our hopes and our fears. We draw the line at making personal attacks. But if we can't share our worst days, thoughts, fears, how do we get the encouragement and understanding we need on those days from the community here, and we all have them. If it becomes a place where we can only talk in platitudes, then it isn't the forum that it has been. I've seen some folks here in some dark places. Hopefully we can listen and empathize and in so doing provide a positive atmosphere. If someone's post provokes fear in me on a particular day because of what I'm struggling with at the time, then I move on to another post and let others respond to it.
Not to put people down and say they're going to die 5 to 7 years earlier then expected
Wow, deductive reasoning isnt part of this forum either. I cant help the fact that my words however they may be spun or be perceived, are an extension of myself and my experiences and I will not stiffle the room with undo fallacies , and unreal expectations do to the square minded and easily moralbassed offensive-defense tha I see a lot of.
You know my family says I'm a very negative person and even my friends say that I try my best to stay positive through this disease. It's not fair when you have people saying stuff like that but maybe I should just stay away from these sites all together I really like some of the people on here but the negativity just brings me down worse. It's one thing to talk about your problems and vent but to want to bring other people down with you that sad.
Sad is knowing that you won't even consider the possibility of others having lives that don't live up to your moral expectations.
If u do like some people plz don't let my words discourage you from the whole reason you joined this forum. I apologize for making you uncomfortable, I truly am! As I've said, I expect everyone to take part when they can otherwise why are we hear. I post "doom and gloom " is a scapegoat way of saying I don't belong! Maybe I don't, but if you read my posts I try to be present and helpful when i can and by speaking these words as I have only lends itself to the idea of our differences.
Sites that have or allow nothing but rainbows, unicorns, cute puppies and fluffy kittens festooned with garlands of rosebuds and gypsophila are extremely unhealthy for their members and they present a false image of what living with MS is really like - ESPECIALLY to the newly diagnosed. That is not to say that positivity does not have a place - it does, and positivity is essential to survive life with MS. However, if positivity is the only thing allowed it can drive those who are struggling into even darker and more dangerous head spaces as they do not feel safe to vent, and the risk is that they will feel that everyone else is doing just fine, and they are the odd ones out.
Life is real, it is warts and all, and portrayal of all sides of it should be considered normal and acceptable. I certainly do not agree with some of the sentiments posted in some of the threads, and with some of them I shake my head in despair at their ridiculousness, but unless it is defamatory, threatening, bigoted, sexist, racist, pornographic or illegal then that person has a right to express their views.
Now, where did I file all those images of cute puppies, fluffy kittens and unicorns decorated with rosebuds that I've been saving for the day when the portrayal of real life was no longer allowed. Note to self - don't forget to look for that picture of a fireman carrying a cute puppy through a garden of roses, while a double rainbow displays over his head - that one should get me a five star rating!
I am flabbergasted by the amount of people who will never accept these truths and that is the most dangerous part of it all! This forum is for all, not all those "I" people who see fit to chastise and bring a occult style of thinking and healing to a different time and place in their opposingly, acclimated world!
The forum may be the only place where someone can express negative feelings about MS. We all have negative feelings about the impact of this implacable condition at some times, and where better to express them than here, where others understand and can support us in a time of emotional need. The rules for the forum are simple:though we are free to express ourselves, we do not attack one another.
I heard this disease will not shorten my life expectancy if i stay on my meds
And it hopefully will work. Medications are helping a lot of people. We are close to solving the problem all of us face, I only offer a viewpoint from me and try to use my words as a platform for diversity, as this disease offers our body as a platform for showing how much diversity there is in the way it "may" or "may not " affect others.
👍🏻
I thought we could express good or bad thoughts here.I think what motivates many of us is the unknown and fear.we are all in different stages of this crummy disease.so if we ask "does this disease shorten our lives?"the answer is maybe,maybe not.We all have new info that could help us all(I just chose that statement,sorry).This disease is full of questions and statements because there are so few answers to cure this disease.I think we all have the best intentions.I personally use this site alot of times to scream and cry.everyone has been very supportive of me,thank you
I personally don't think a "cookie cutter style of thinking " when it comes to m.s. is gunna cut it. I share my experiences and offer a vastly different viewpoint and progression of this disease apparently. It's ok to question but I have and aim in everything I do. My trials started at 14, seizures gof bad and back pain but at 28 I had maybe 50 debilitating seizures and since then only getting happy healthy view points, not help. I have always worked with my hands, owned a commercial, residential, remodeling, building, and painting buisness. I done a man's job for a decade before the ever escalating symptoms became more than I could handle! So without any help and only cross speculation as to why I was being such an asshole a lot of the time and unable to be their emotionaly, was the fact my world was being turned upside down and no one would help. So again, I will be a fly on the wall and help when I can but until the reality sets in for a lot of people, vastly different ways and progression of this disease will continue to have those with no basis for comparison to judge people and words with the mindset of a bought jury! M.S. is deadly, as all my lesions will attest to.... lol Its hard for people to leave their mental bubble but dismissed words on the premise of just not knowing and only have the answers, is not accurate, socially adequate, or constructive to conversation either. I did everything for my family and did it like a championship boxer with a broken hand. I just hope that any newbies reading my posts can forgive the fact that even though they have already tasted this disease , that others will deminsh your words and your experiences to better suit their flavors of the weak, I mean week. Sorry just my unflinching opinion.
i agree and i myself don't know what you have gone thru but again you don't know what i have gone thru and as others on here but again i have no idea of or who they are talking about ...i too want to help but again i am not feeling sorry for myself ...there has been times in my life before this monster got a hold of me that i had more major things happen and i had to be a strong parent thru some bad stuff by myself so ha we all have been thru lots of stuff ...so we are all here with this same disease and are here to hear or write about it and to help if possible to help someone to deal with it ...loads of love and happiness even with living with it to the best we can and be happy any way we can and give others a way maybe to have some happiness too...i like to read every ones posts to see how they are coping ...take care and i don't think anyone is pointing fingers ....we read what we want and ignore the rest....have a wonderful day and so many more to come...
Trust me the reality has set in I realize this disease is very hard and it sucks I've never been able to drive and I will never have a driver's license I've never had a job and I never will have a job I'll never have nothing on my own so I know what it's like to be down and out but hearing negativity like that does not feel good yes it's okay to vent but it's not okay to bring others down when you say that we're going to die early or anything else like that people might really take it to heart. Also I have two children one is little can't do much with her so yeah I have a lot to be depressed about but I tried to look at the bigger picture I'm still here and I'm still able to be a mother
we all need to be happy right and be able to see happiness all the time...hahahahahha....but of course when we are having a bad situation going on and they need some help with it ,so it depends for life isn't always happy for everyone ...right....but we do need to look at it at a realistic ways at times because this monster doesn't always make life happy ....so hopefully who ever is out there and they need help that is what this site is for to manage around all of the problems with this disease for i know i am not perfect and neither is my parts of the monster they call MS...i don't say much about the problems unless someone is asking if someone has had the same problems or is not any help is asking for ...good luck to all of us ...
I don’t remember seeing anything negative but I do agree we are here to lift each other up. However if someone needs to vent about something I don’t see a problem. We all have those days; sharing experience, strength and hope allows us to connect with one another. Connecting is what life is all about. There’s not much worse than feeling all alone.
How not to be the pessimist. I jumped for joy when I was first diagnosed. Then, after six months of Copaxone that did nothing, I was the pessimist, but hopeful that the Tecfidera would work. It did for close to 8 years until my body rejected it as an allergen. On the positive side, 8 years w/o relapse was a positive miracle. Now, Ocrevus is my new hope and fear. I lost so much during the relapse and have gradually lost since then, all I can be now is a realist. It works or it doesn't. I know my time as a Design Engineer is limited, perhaps a few more years, so what I am focusing on is having everything in place a few years down the road to step back and focus on what is important, ie. my wife and myself. Does that mean I am becoming an optimist? The problems and mental agony this disease has caused me well over 20 years without diagnosis (except family doc saying not enough sleep and too much stress) are hard to overcome.
I certainly hope I can work out the next few years so my wife and I can enjoy our time together, much unlike the lesson my father taught us of working till he was 80 and a year away from death due to Parkinson's. We are also caring for my mother who is in stage 7 Alzheimer's with a perfectly healthy body, but her brain is gone. Last month we put her in hospice care. I can not put that decision on a scale.
No one should be forced to keep their mouths shut because they have bad news, or for that matter good news. Both are of value, some clear out the tear ducts and others have us jumping with hope and joy.
Looking at only one side because it is easy simply leaves you in the dark.
Life is not all good and positive. As jorrell just mentioned above, yes, I too just in the past few years lost both my parents and my mother-in-law due to horrible, horrible things; Diabetes, Parkinson's, Depression. BUT, yes, I think a positive attitude is what is needed to keep you going. But, you can't hold in your mental pain about all this either. We all need a little help, and this group helps. I went through many, many years of hopeful promising M.S. meds that, well just didn't deliver. Some actually made life miserable. It helps to know what others are going through. Would I have lived with years of flue-like symptoms with fevers, shakes, aches.....for years and years from the DMT's I was taking, if I knew others did so too without benefit? We want to know what works, and what doesn't. Yes, it's always nice to offer positive thoughts and advice. And I try to push everyone to push themselves positively, as I always have myself. And for me, my positive results I want to share with others. I don't think they are limited to me. So I explain what worked, and what didn't. And this disease has been horrible. I went from very capable, almost unbeatable individual, building wealth quickly as a result of all I accomplished, to a comatose like vegetable, poor being unable to work, facing being flat broke in a short time. To finding health through nutrition, coming out of my coma like life, off all meds, okay still poor, but with being excessively frugal, I'm staying afloat financially, AND, I now at least have good health, Okay, with lots and lots of battle wounds from this disease, but lots of time to enjoy life. It may take me 10X longer to accomplish anything these days, if I even can anymore. There are lots of things I can not longer do. But, at least I'm no longer working every waking moment, missing the world go by. But, you know, I loved that too? There's good in just about everything. You just need to know how to look for it.
Well then I guess it is SAD I'm try to bring others down with me............
As I've said before if I'm wrong then I can be fact checked! I will continue to speak about things I have experience in and everything else is up for debate other than the facts. I am fully capable of doing alot........of not many things. Tradesman was my life, not n e more, also have 2 kids, I enjoyed a lot of physical activities with not n e more and etc. We all have things that make our life intolerable and with these things come a certain amount of fortitude to overcome. Of course I know these things and are reminded of them every day. These words are mine and I hold them dear and they are my mental cornerstone. We all would love to be in that world where nothing is morally offensive, however my feelings are spoken in volumes in life and music has taught me the value of originality in thought, so that I may come to peace with the fact no one will hear, or understand your worlds like yourself.
I never said that you tried to bring others down with you I think you need to seek some counseling because you seem sad. I don't know what you have been through but I do know that this disease is hard and it causes Great Depression sometimes it's good to talk to people but saying negative things is not good at all and any type of way whether we had Ms or not
I am trying to find out weather or not I am actually supposed to watch something pertaining to a childrens, fictional, animated movie for a reason or not. I have been ok with this conversation ending already. Not sure what aim was but by the title I have the gist the narrative is something cute and inspirational?
And I'm srry again if this last post seems standoffish but I bath in facts and find loads of inspiration to be folklore or an attempt at understanding.
Everything is not as u see it I promise! I am here in the here and now and the brain can rewire its self apparently but I tend to scrutinise opinions based on morals. I am not able to sit through a sermon the way that I am mentally unable to entertain the notion that provocative, or leading statements about positivity will repair mental pit falls as well as affect brain damage. I am a pariah so to speak, for having these thought processes. I can accept help in many forms but I strongly feel that I am not equipped to understand obscure ways of thinking. Having said that I have taken plenty away from this platform and will continue to use it as a baseline for things that pertain to m.s.
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