G'day Newbies. I know this is new frightening and crazy to you. I know it was for me, that was years and years ago, I did not know u could cry so much, but u can. Here are some out there thoughts that in-between tears u can just store in the back your head for a less emotional moment. HOW DO U PERCEIVE YOURSELF & HOW DO U WANT OTHERS TO PERCEIVE U. When people ask me what I do (Wworkwise I think) never really worked that one out. I always say RETIRED, with a smile, they assume I had a brain and that my stumbling is just being a little under the weather, no problem I do not notice it and do not know them or care what they think. I do not really like ms Warrior because in my mind that suggests to me me fighting back & that I might win, I WONT. Maybe ms acrobat as I am constantly juggling what I can do with what I can't on 1 foot while standing on a cricket, baseball, golfball that has been covered in slime. for my Mothers favourite an ms'er. or maybe perish the thought I am Royce or John or Jack or whatever your name is. I am not illness I am whats left inside me. Do cancer oeople say thay are lung ovarian skin testicular cancer. Just think about it for a moment are u going to define yourself, identify yourself by the illness that u have or by what it does to you? Its okay to be scared very scared, I still am, its okay to cry yell kick a brick wall. I still do, well maybe not the brick wall, I found that really hurts. But do just think about that one morning as u lay in bed. U decide how U define yourself don't let others decide it for you, find some not so bad in the terribly challenging. Find away through that constantly changing MAZE that is ms. Or of course learn to have weird thoughts and babble on the computer
Have a very boring and quiet 2017 and avoid spinal taps, no need to do it these days MRI tells them u have lesions.
I hope u enjoyed my ravings and it gave u dome food for thought, enjoy the journey that we are on.
Royce
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RoyceNewton
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@RoyceNewtown it Fancy1959. I promised I'd be off today but I got home late tonight and I saw your post and I had to read it. You continue to amaze me and I pray you stay very active in our chat room. Maybe it's just the men that I've grown accustomed to and have known all my life but typically no man that I know talks about them crying out loud like you have here. I think it's terrific that you're showing other men who are shadowing us on this chat room that there is a wide range of emotions that MS causes us to experience and it's okay to let your emotions come to the surface anyway you want.
If you're not interested in defining yourself as an MS Warrior use any terminology that makes you comfortable. You said we cannot win this battle. I disagree. We might not win the whole War right now but in the future, someday we will. Right now we can fight and pick our battles and win those! 20 Questions into your test, MS try to overwhelm you and wanted to you to turn tail and run. But you had an epiphany, fought back and finished your test. To me you won that battle! I've gone to physical therapy and have seen dramatic results in the Improvement in my walking in my balance. To me that is winning a battle by taking control to some extent at least of my body back. I refused to lay down an let MS to walk all over me.
Are we scared to death? Heck yes. Anyone who is fighting this dreaded monster and tells you they are not scared is probably not telling you the full truth. However we choose to work strengthen our bodies to be successful against this disease to win even the smallest battle, is a triumph for us all.
Royce we are always just a post away. Your topics are very insightful and you are already a vital part of this extended family. Your male voice is being heard loud and clear throughout this chat room for both the ladies and the gentleman who are shadowing our posts., Your straightforward voice has much to teach us and hopefully in return we might be able to teach you a small tidbit here and there. Take care of yourself until we text again and please remember, together we are stronge!.
Honestly did not mean to upset u or anybody, sometimes I can be a little ( u pick the word I just meant some may not be up to being a warrior, me I am fine with any title, but mainly I just like me. I do see your POINT thoug.
I am very scared - thankyou for acknowledging that it is okay to feel this way.
I do not feel like a warrior - more the powerless victim pleading for mercy and a lighter sentence at the end of this relapse. Life has gone on around me with barely an acknowledgement by loved ones - another boring relapse and she's no fun again, unable to go out etc. This is like shifting sands - you just get a handle on one level of disability then are challenged with another. I wish it would pick on something other than my spine. I haven't cried yet - I'm not sure how much I have lost. Time will tell. I think I may have some serious work to do in this brave New Year. All best wishes to you, Angela x
Good luck, & remember to juggle, drop the balls if u have to. We all can not juggle 11 balls, maybe 6 or 5 might be a better option somedays, somedays 2. U will know what u can do & remember u do have a voice, use it if u have to. NO is a very powerful word.. Royce
Thanks to everyone for your perspectives. Most days I don't feel like I can fight, since it seems like a losing battle. Other days I feel a little more hopeful. I'm very grateful for those doing research to cure or better treat this awful plague, since I don't have that ability.
My husband and I talked about this. I thought he might have a different perspective or male approach to this.
As for me, I know that having had MS for 25 years now, I've come to a different place of acceptance than the frightened me of 25 years ago was at. That doesn't mean I've thrown in the towel and don't get up each morning, make daily plans, or even dream big. I still do. I'm no different than the old me. Perhaps the me today is just better at accepting the disappointment when the day or my dreams don't go as I had hoped. But the next day I get up and do it all over again. Why? Because I believe today will be better than yesterday was.
I'm the listener and caregiver in our family. My husband is the fixer. He now knows that when I tell him I'm struggling with vertigo, or walking, or I'm in tears because of my bladder and bowels, I don't expect him to fix it or make my MS disappear. It took him some time to accept that. But over the years He's learned that means I just want him to listen, or hold me, or understand that I'm not up to whatever he or we had hoped we'd do together that day.
Dave told me that two men in a foxhole know they won't win a war, but that doesn't keep them from giving it all they've got and fighting like they could. He then added: And who knows what a year or two could bring?
There are a lot of people out there fighting for us--the fundraisers who help fund the science to figure out what really causes MS--and the means to bring more awareness to the disease; there are the doctors; the fellow 'MSers' willing to participate in trials to better understand how to treat the disease; and yes, even the pharmaceutical companies that have provided far more drug treatment options than were available when I experienced my first MS relapse in 1991.
I wish I didn't have MS. I wish it didn't even exist! And while I may not experience all the symptoms or even to the degree that many others here do, if not for me having MS, I really wouldn't even be able to begin to 'get' you all, or lend an ear if you wanted to rant or cry or just be angry.
I get it. I get you. And I'm thankful you get me too.💕
Very well said, your Hubby sounds like a good bloke, amusing in my household as we both have ms. We do get discuss how different is for boys and girls, Fun times
Royce, I remember reading about someone here with MS being married to someone with it. I apologize for not being able to remember and keep everyone straight. Thanks for the reminder that it is you. But, my, you have a double challenge, don't you? I'm really sorry about that. But from the sound of it, it appears you both are working through it together. I'm happy you have one another. 💕Dawn
Wow, that's a tough situation. In some ways, you will understand each other better and know the best way to support one another. I struggle to do much physically on a relapse and household tasks are seen as 'my job'. So the bin overflows, the laundry piles up, the rabbit doesn't get cleaned out, washing up and recycling overtakes the place. If I want to eat ( appetite is sketchy on relapse ) there is nothing clean to eat off and if I can't stand on my legs adequately to wash dishes/prepare food I simply do not bother. I'm looking into getting a perching stool, although space is very tight where I live. I have learned that I need to be better organised in future ! x
Not so tough for us, we have it but except for my Trigeminal issue a few years ago life is reasonable stable. Royce & its my job to clean she likes to take the garbage to the curb, no idea y she just does.
RoyceNewton Thank you for your refreshing thoughts that broughts smile to my face and replies in my brain! When my daughter was diagnosed with Crohn's Disease at age 18, after a year of reading and studying about Crohn's she was furious that people with the disease called themselves "crohnies." Her response, I remember, was that she would never be a "crohnie!" Nor will I be a MSer, per se. But it is a convenient term will talking to my husband who doesn't begin to understand my mental or physical condition to start a sentence with, "let me read what an MSer wrote today." Just a convenient term in vernacular conversation. Shortened version of "a person with multiple sclerosis." But, yea, it is kinda limiting. Profiling. Labeling. Name calling. All those things not politically correct. I am the same person I was on 6/5/16, that I was on 6/7/16. The person on 6/6/16 I do not claim. She was in shock and another person I do not know, do not want to know, and do not want to be. But, alas, I am. Just another person with just another label that just another specialist decided to write down on a chart so he could prescribe another medicine to make another CEO a little richer and add me to his patient list to add to his coffers of income and portfolio and statistics for this label that he attached to my name. I am still dealing with the same pain I was before 6/6/16, the same cognitive confusion before 6/6/16, the same imbalance before 6/6/16, the same uncontrollable emotions before the big label day of 6/6/16. So what difference did that day make? The biggest difference was this label was the label the medical field had labeled my dear cousin with that she lived with 30 years ago, and then died because there was no medicine in the 80s. So, I was angry when he placed that label on me since he said I should have been diagnosed (wooops, labeled) 20 years before. So, the little gods give me $20,000 miracle medicine to stop me from dying like my cousin only to discover 6 weeks later that it is killing me from severe bronchial infection. Oh. Mmmm.......guess the little gods didn;t read my history of COPD. Not surprised. Does anyone every read the 20 page history we always complete??? Now that should define us - those pages and pages and pages we are asked to complete when we go through a new door, a new office, a new location (ever wonder what happens to them, cause they define our lives). Define me? Does this label define me? I was not given this label until I was 69 so I do hope I had some kind of definition in my head who I am before 6/6/16. One thing, I will no longer be defined as an accountant, or a daredevil white water rafter, or a week long backpacker, or a marathon debater, or a hostess for a family reunion of 25 - but then those things didn't define me anyway! Those were "things" I really enjoyed doing!!! Because of the physical condition of my mind and body, I am no longer able to do the "things" I used to enjoy so much. If someone wants to put a label on me to identify me with a group they are in, that is just fine and wonderful with me and I will join with them, laugh with them, encourage them, tell my stories and experiences, and help in any way I can. Because that's who I am. I have a soul, a spiritual being, within this physical labeled being, who loves my God in faith and trust, and I enjoy bringing smiles to others, peace to others, joy to others, because that's what Jesus brings to me, and that's how I define myself.
I agree, NO spinal taps! Stand up for our bodies! Nothing more than what is required to stop the progression of the destruction of my brain and spine, in any way that is reasonable to me, even if it is only a 40% success rate. I want to try to keep my brain - or I will get bored.
Sorry but this a label I am going to give u wether u like or not & no apologies from me, EVER, and it is "IMPRESSIVE" wow to do so much in a lifetime & u r still going. Yes IMPRESSIVE, hats of to you, Royce
RoyceNewton i am confused! I thought your original ramblings stated you didn't think it "acceptable" to be labeled by whatever disease may occupy our bodies and you didn't want to be labeled an MSer? And all my ramblings was justifying that it was simply a convenient distinction and not a definition of who we are! Guess I lost the path you rambling down! So of course you can label me an MSer if you like - great group of people, even if I am too laid back to be a warrior for any battle (except the one about good and evil). I could pick up a toothpick I think, and make a few quick jabs--nope shoulder hurting too bad. I call it a day. No sleep since Saturday night so I am rambling! Farewell, til we meet again!
@Karen-x that does bring up a haunting memory, like a shadow in the corner of my mind, the walk to Emmaus. I will google it. Google is my current day Encyclopedia Brittanica (and Jiminy Cricket taught me how to spell encyclopedia!). Google doesn't require dusting. I love these modern day conveniences. Thanks, Karen! It could be worse, so much worse!
OK, l guess lm confused here and going to babble this thing out. Don't we redfine ourselves everyday? Even before MS hit our lives? We were kids learning (defining), teens learning, adapting (defining), As adults we adapt and define ourselves everyday by what we can do no matter who we are? We adapt and redifne. It's the human way. OK l think l got it lol sry of you got it let me know 😊
From one old MSer to another, I enjoyed your rantings, Royce... 30+ years for this one--maybe you have some ideas on how to get my family who is newly reintroduced to me how MS REALLY impacts my life. Either I figure a way or work my butt off on the next Saturday morning I'll be seeing them so that I have a seriously bad day--hate to do that as I only see them every two weeks. They don't see it as I really just want to enjoy my day with them instead of having a bad MonSter day. Silly but lived a state away for most of my newbie years so they've not seen the day-to-day impact of this disease. Add to that, when I turned 50 all hell broke loose so most of my years away, I was pretty good. So in a sense, it's still new to me (just now 52 after Dec. b-day)...
Let me know if you have any jewels of advice! xo Cj
Let me ask you a question from a different perspective. Is it necessary for your family to really understand? Maybe this is something only those that have it can truly appreciate. Do you have something you feel you must prove to them? Somehow validate that you are, in fact, suffering? I have felt this urge myself. Especially when I feel someone is looking at me like, "yeah, sure you're sick". I would suggest you attempt to always be at your best when they visit. And don't mention the MS. If a snide comment is made about not being sick, play along. Totally deflect the whole situation.
Now, I could have read that whole situation wrong and am just talking to myself. Lol
You are right... I'm just having issues with the judgmental comments that have no place for anyone to judge any person for anything... My background is in the arts having owned to art galleries and a fine housewares store. I am one who DOES NOT JUDGE... Plus they are teaching my great nephew (12) and great niece (9) the same behaviors, At our family Christmas celebration, I did not appreciate the mocking of my walking by my great nephew--it is a learned behavior which he learned from my sister... Nothing to prove, but as a family of TEACHERS (entire family are teachers, public school or corporate as I was)--I EXPECT ou teaching gifts to be used for GOOD not bad...
I am so sorry that happened to you ddeadred l would have expected way more also! And demanded it from thier parents!😠 My grandkids ever did something like that, not only do they get a time out but they WILL apologize. Me l swat um upside there dan*. Head and they apologize! And l go toy shopping in there room! They earn it back!
Par for the course with my family... I just let it roll off my back--it's easier than wasting my energy trying to change the unchangeable... I DO know I'm making a difference with my great niece though as she is now saying PLEASE and THANK YOU... Why those kidz were never taught basic courtesy is beyond me...
I knew moving back to PA after30 years in Ohio would be challenging!!! Like most families, the dysfunction is prominent... I KNEW that I would not fit into the mold... LOL... But, I know longer commit the cardinal SIN of wearing my scent...LOL I'm willing to try to fit; I just keep my MOUTH FIRMLY SHUT... whatever IT TAKES to keep the peace! xo Cj (pronounced See-Jay... Go by my initials of my first name)
9? And just now saying please and thank you? Incredible! Those parents are both ignorant and stupid there are no words how should shocked l am. Pretty sure that's what's wrong with the world today. It's a gimmy world and no one appreciates HOW it was gotten.
Ddreaded, that has fairly shocked me ! Do their parents not pull them up for this unacceptable behaviour ? !
I work and shop for one neighbour and also shop for another. Their reaction to my current relapse and inability to be safely mobile was complaining and angry impatience. It is an inconvenience to their routine and expected level of service - they don't want to have to get alternative help. They don't seem to take me seriously/believe I am truly struggling. I am currently needing 2 sticks, instead of my usual one, as I have lost balance/power. what are they not getting ! ? I just do not understand some people's tunnel vision.
I'm so sorry we have to deal with such ignorant people ! Angela x
Angela, like I always tell my Mom (who taught 3rd grade for 30 years), the kidz are being raised by wolves (both moms are former drug addicts)... Nearly impossible to make an impact for me as I see them 6 hrs. every 2 weeks... I do have my great niece saying please and thank you though--little victories!!!
With your neighbors, some folks just don't get it... Heck, my family does not get it either, but I see the as often as I see the kidz... Unless I were to video myself all day for a week would they start to get it I think. 30 years of battling the MonSter, I find some folks NEVER get it...
Don't worry about me! I hold my own and keep my mouth shut. YEP, already being silenced and I've only lived close for 1 1/2 years after living in Ohio for 30 years. Why not? Lived with an idiot man for 15 yrs. who trained me in being silenced. Sometimes it's easier to just keep the peace and run the tapes in my head of how it SHOULD be.... xo Cj (Seejay--go be initials, even call myself Cj)
RoyceNewton Like you, I am unwilling to let MS define me. I am also personally uncomfortable with being called a MS Warrior but school classes, teams, and companies often have chants, slogans, and vision statements which bring people together as a team, so I accept that this is the purpose of the term. The reality is that whether we call ourselves a warrior or not, anyone with MS has only two options: action or inaction, the latter being submission to what cannot be controlled. Because there is a nobility in the work of getting through, in persisting, I hold dear these lines from Gerard Manley Hopkins', The Windhover: “sheer plod makes plough down sillion shine.” The ploughman (or in my case woman) is long gone from most of the world, but when a plough cuts through soil, a sheen (from the heat of iron pushed or pulled through roots, stones, clay) is left on the sides of the furrow behind the blade. I like to think of my everyday effort to go forward despite the obstacle of MS as the sheer plod, and trust that the way I choose to do this leaves a sheen on the path I forge. So I am not a warrior but a ploughman (though it’s not at all a catchy phrase!)
erash what an interesting question. Since we always have a choice (free will), we can choose action or not. In the face of MS, we may at times be compelled to inaction, to submit until a symptom loosens its grip on us...but I am not sure if submission is a choice. Most of us don't choose to be beaten down, to be defeated. In my birth family, I was noted for stubbornness and determination, traits I obviously still have (sometimes in spades!!) I may not be able to defeat MS, but I will resist and struggle against it in myriad ways.
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