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  • johnjr1964
    So true. I'm where you were at in the first line except I'm not going insane but dying slowly on the inside. Nothing seems fun. Nothing seems possible. Worry and fear consumes me day to day. Feeling like crap on the inside is so true. I don't know who I am any longer. This for your honesty and suggestions and I'd love to connect 
  • jalo1234
    I just tell them how I feel, and when they say "you look helathy" I thank them and tell them that is my goal, and I do not let MS define who I am..I just tell them it is a disease that causes me to be inconvinenced with the sx. I have.  I go get my tx. and am glad after all these years there is tx available to stop the progression.  I dont tell them I feel like crap, which I do, however, if i concentrate on that and being scared, i feel like i will have lost the battle to the disease.  Cognitavily, I'm sure I have slipped somel.  However, I try not to let it interfere with work, and my co-workers are wonderful and supportive when i need something explained to me that I've done before...
  • kaymiddlebrooks
    shpc wrote: I have experienced just about everything that everyone here has talked about. It was getting to the point where my cognitive problems, depression, anxiety, mood swings, and debilitating fatigue were literally driving me insane, especially trying to hold it all in. So, I did what most people probably don't initially enjoy (but now appreciate): I talked about it. I talked about it ad nauseum, to anyone who would listen. I started with the husband. If he tried to blame something else for why I accidentally left a pot of food burning on the stovetop, or had to leave the room to find a quiet space, I would sit and explain it to him, several times if necessary, using any and every analogy I could explore. I would MAKE him understand why I felt the way I did. It was difficult at times. He reared against me, often continuously telling me that he "got it"; but I realized that he didn't get it until he started to tear up because It hurt him so badly to know the truth. Then I went to the family. They wanted to tell me how great I looked. So I told them thank you, but I feel like absolute crap inside. I am depressed, lonely, and scared. They were shocked, to say the least to hear this from a person who looked quite good actually, but also relieved to know the truth. Then came the friends. True, they want to listen more than others. I'm not sure why. Maybe friends can separate themselves more from the "reality" of MS, so it isn't quite as scary as it is for those closest to us (spouses, children,parents, etc). So, I am not sure if this will work for others. But the best part of it, is that it's like having a free psychologist -- you are able to vent to others, release that built up anger and frustration, and figure things out by talking (I believe that's what we all do anyway with a therapist-- at least that's what I do. I sit there and talk and seem to figure it out all on my own). I hope someone will find this useful. It can be scary and confusing at first, but it's quite liberating to feel like you can let it all out. What are we here for if we cant be free to express ourselves? Best of luck to you all and thanks for the great topic.


  • itistonyb
    shpc wrote: I have experienced just about everything that everyone here has talked about. It was getting to the point where my cognitive problems, depression, anxiety, mood swings, and debilitating fatigue were literally driving me insane, especially trying to hold it all in. So, I did what most people probably don't initially enjoy (but now appreciate): I talked about it. I talked about it ad nauseum, to anyone who would listen. I started with the husband. If he tried to blame something else for why I accidentally left a pot of food burning on the stovetop, or had to leave the room to find a quiet space, I would sit and explain it to him, several times if necessary, using any and every analogy I could explore. I would MAKE him understand why I felt the way I did. It was difficult at times. He reared against me, often continuously telling me that he "got it"; but I realized that he didn't get it until he started to tear up because It hurt him so badly to know the truth. Then I went to the family. They wanted to tell me how great I looked. So I told them thank you, but I feel like absolute crap inside. I am depressed, lonely, and scared. They were shocked, to say the least to hear this from a person who looked quite good actually, but also relieved to know the truth. Then came the friends. True, they want to listen more than others. I'm not sure why. Maybe friends can separate themselves more from the "reality" of MS, so it isn't quite as scary as it is for those closest to us (spouses, children,parents, etc). So, I am not sure if this will work for others. But the best part of it, is that it's like having a free psychologist -- you are able to vent to others, release that built up anger and frustration, and figure things out by talking (I believe that's what we all do anyway with a therapist-- at least that's what I do. I sit there and talk and seem to figure it out all on my own). I hope someone will find this useful. It can be scary and confusing at first, but it's quite liberating to feel like you can let it all out. What are we here for if we cant be free to express ourselves? Best of luck to you all and thanks for the great topic.


    I have alot of problems just funtioning. Severe anxiety. Severe depression.light and noise sensitive. I really dont know what to do.
  • lilly64

    @shpc (and others):  Thank you very much for your post.  I have been experiencing ALL of these problems for several years, but over the past four or so years, it has gotten very bad.  Get my new MRI results tomorrow - that is, after they already found two lesions in 2011, I had/have optic neuritis, the numbing, the tingling, the FATIGUE, and so on... The cognitive along with the fatigue, I would say, are the hardest things to overcome, and I am hoping against hope that treatement will help.

    I have to comment on your methods because it sounds like a GREAT way to inform why I have been like this for so long - when I get dx'd for sure.  And I will...  With my parents and my siblings, there have been other things that have come in the way, or so I have told myself.  But every time I think of what those things are, I actually get a jumbled up message in my brain of all the reasons.  However, not ONE of them being that I have MS and it is messing with my mind.  In fact, when I thought I was drinking too much and being depressed.  I was having two glasses of wine per night but it never got in the way of anything and my depression obviously has been from the games my brain is playing on me and that I also felt so alone in this.  So I decided one day a year and a half ago to seek out one of my sister's advice on things.  Whoa..... Just as you said!  I try to tell her how I feel, what's going on with my disability (I also have major DDD and am on disability already for that, but that could also be from the un-dx'd MS).  She looks at me across the lunch table and says, "You are fine; why do you think you have these problems?"  Um..... Have had two major back surgeries, and need more, etc.  She goes on to say, "You look great; you made it here today.  So why can't you work?"  I almost reached over the table and strangled her!  She said that one day she experienced knee pain, it turned out to be a herniated disc in her back, she got PT, and is fine now..... I was like, "Great, so you can go screw yourself now, right?"  

    Anyway, my point being here is that many times we DO look like our old selves; we look good on the outside, but as you put it, we are screaming on the inside.  As was I that day.  She had NO idea how many hours it took me to get ready to meet her for lunch; I began getting ready at about 8:00 a.m.!  I haven't spoken to her since.

    But I am tired of living this silent hell as well and truly like the way you "reached" out to your loved ones... :)  My husband is getting a little more understanding of the extreme possiblity this is what it is, but like you, I will have to force it on him to really understand.

    So many people do not understand this disease because it is wide-ranging and as we all know, no two people have the same things at the same time.  I believe fatigue and cognitive issues are the main problems in most of us....

    Thank you for posting this.  Peace to you and yours!

  • joynerthedad
    I have a mom, a nurse no less, who just doesn''t "get" that cognitive impairment is real.  Whether its not being able to focus and cook with noise and other people around or difficulty in dealing with too much stimuli.  It's a "mental block" or being silly.  After having her falsetto-mimic my request for being left to work in the kitchen alone back at me, I am seriously reconsidering my visits over there.  I have been there after she has surgery and helped out till she was fit again.  She has many good qualities, but this one thing grates on me.  Anyone else have problems like this?  How do you cope? 
    This is a really difficult topic.  I have read a number of the posts.  I think your mother may be doing the best she can to encourage you.  Perhaps, in her own way, try to minimize the disease in your mind.  In a way, get you to work through it.  I would continue to visit your mother, though it may be easier said than done.  She means well.

    As far as how I cope with others, the jury is still out on that one.  There seems to be an over all lack of understanding that I have limits.  People can be very cruel.  Over all I have kept people at a distance.  Since I am very open, I readily tell people I have MS.  That does not go over well.  I hear the general ' I am sorry' and after that, people just treat me differently.
    I am glad I found this place.  I could use an outlet, and definitely some understanding.
  • hopefilled
    I have often wondered if I am "being a baby" in the last three months since my diagnosis when I am frustrated by the excessive fatigue, "brain fog" ,constant tingling in my hands and persistent vertigo that often keeps me from driving. As a nurse, I have not worked since my diagnosis in May. I am blessed to have a supportive husband. My intention is to pursue work again soon...but I know it will be a physical and mental challenge (and perhaps struggle)..
    I think part of what makes MS frustrating is that we often hear "You look so good!". I have to chuckle because I think to myself, "What is a person with MS supposed to look like?". People often have no idea how our "invisable" symptoms plague us. I try to not get frustrated by these comments and instead take it as a compliment that I don't "look like I have MS" (whatever that picture looks like...).  But sometimes that comments makes me question if I am not being tough enough...
    I think that is why it is good to talk with others with the disease. Even though each of our stories are different, we have some commonalities. We know what it is to feel worse than we may look. Someone made a very excellent point too, that often others just really dont know what to say (I am observing that alot). I guess we can take a good long dose of patience away from our MS (no prescription necessary...)
  • triara
    I hear all of you and have been there too.  I think my Mom means well, the denial bit sounds right.  I told her I have problems when drawing to work around because my visual memory of something is gone as soon as I have looked away to try and draw it.  She tells me it is just a mental block.  I can also look at my watch and not remember what it just said ten sec ago..  I work around it and seriously hope I am never witness to a crime.  I would make the worlds worst eye witness.  I often get people in television shows mixed up if there are details changed about them.  Add a moustache, change the hair, take away the hat - I dont recognise them.  I think of something to look up on the web.  By the time the browser is open, its gone unless I remembered (ha!) to jot it down before clicking on the browser icon.  If there is noise, it is often impossible to hang around it. 

    I have tried explaining, to disbelief.  I have tried getting mad, its just me being silly if I let her see my frustration or tears. She just mimicked it back at me in a falsetto.  I have never come to close to striking her as I have then.  It was a near thing.  

    I finally decided that if she wants me to do stuff and can't learn to back away so I can focus, she can do it herself.  Up to and including Thanksgiving dinner.  On that occasion I was doing OK till she added in a few requests on top of what I was already doing.  I start losing track of things and messing them up unless I can zip around from one thing to the next with absolutely no distractions.  I have limited gas to run on before I wear out and can't stand.  I plan out everything to maximize what I do have.  Anything that means stopping to talk, wait, go around something or someone means that the entire mental house of cards crashes down.  I am a very very good cook.  I do everything from scratch and seldom use recipes.  I push myself to get it done past the point where I need to sit down.  I generally accede to new requests and try to get it all done.  I decided that if I am getting stressed, I am going to quit taking requests and if I cant get the peace to work in, I will just quit.  It isnt worth getting that stressed  because I can't explain color to the blind.    I can see working hard to get these things done.  Running an obstacle course because there is an idiot setting it up I don't do.  I may just go back in my room and read or meditate.
  • leavingsoon2013
    LET ME TELL YOU THE ABSOLUTE TRUTH. MS NEEDS PEACE! IT IS HEALING AND KEEPS IT AT BAY. PEACE IS WHAT WILL KEEP YOU IN REMISSION LONGER.
    PEACE IS WHAT WE MS PEOPLE PRAY FOR. GET RID OF THAT PERSON NOW AND ALL THE OTHERS OR YOU WILL BECOME BITTER, RESENTFUL AND HATEFUL AND WORSE MS SYMPTOMS. SIT IN QUITE PEACE EVERDAY AND YOU WILL SURVIVE LONGER!!!!!!!!!!!

     
  • cyndihart12

    I know it's been almost a year since triara's post about her mom but I just had to comment.  1). My mom doesn't have a sister but I do believe they must be twins.  I have heard that mocking falsetto my entire life and never so much as when I began trying to explain my symptoms.  2). I honestly believe that my mother doesn't do this because she can't face the reality of my disease.  I know her well, I know our history, she just does not care.  3).  Set boundaries and stick to them.  Set deadlines and stick to them.  I used to have a sign in my office that alleviated tons of stress.  Poor planning on your part does not constitute an emergency on my part.   You work alone.  If she wants something for Thanksgiving then give her a date to give you a list.  

    It got so bad for me I did end up slapping my mom.  I finally had to cut her out of my life.

    I was married for 23 years prior to my diagnosis.  I had worked the entire time bringing home 3/4 of our income as well as doing 3/4 of the housework, cooking, etc.  My husband was a career student.  Because I began to feel so bad all the time I had begged him for years to allow me to hire someone to come in to clean the house, have a neighbor boy cut the grass, etc.  He refused saying, no one else was going to wash his underwear.  He was very weird about strangers being "in his stuff".  After my diagnosis I went to him and told him and explained that working the long hours, plus all the work at home etc., explained why I was sick all the time and always so very tired.  Not bluntly, but in a polite roundabout way I said said something like "See, now don't you wish you had said okay to someone cleaning the house?" He said not at all, he didn't care then either.  He said not everyone is like I am, thinking about others first.  He just cared about how comfortable I made his life.

    I find it interesting that counselors are always trying to diagnosis us with one mental disorder or another yet asking us to see the good in the people in our lives that they don't know.  Sometimes we are just good people who have tragically become enmeshed in the lives of people who truly just don't care.

    Fortunately, we can reach out and find other like minded people who do care, who do understand.  I wish for us all at least one human with warm loving arms who will make you feel that you are the king or queen of the world.  Until then and even after that, we have each other.

     

  • lm-durbin
    triara, you sound just like me! I thought I was going crazy, not most of the time, but all the time. I just started a new job last week. I'm having a very hard time for two reasons, one being MS, two being, this is new to me. I've worked the last 10 yrs in medical office. I'm now doing purchasing for a financial insurance company. Though buying/shopping online isn't an issue, I'm struggling with the little things, the new to me things. Without writing it down, it's literally in one ear and out the other! I have issues with colors as well, I didn't know it until I pointed out how pretty my mother in laws new bedspread was, twall(sp) with blue and green. Apparently, it's just blue. I've obviously been seeing blues and greens and purples that aren't there for a looooong time. Could it be that your mom, being a nurse, is simply in denial? I am an only child, there are 30 yrs between my mother and I. She was sad when I told her about the MS, but she is VERY supportive. But I, am a mother of 4 children. Not that I would dismiss any "issues" they might have, but because I love them so deeply, I too would probably have some denial. Because they are mine and I want them to be happy and healthy. But remaining supportive and understanding would be a definite. My oldest son has Gilberts Syndrome. It's a small branch of issues he could face as an adult, will he end up with a form of MS? We will not know until it happens, but he will be fully educated on MS if and when it strikes. Memory and speaking without a stutter, along with remembering what to say have become worse for me too. Add that to the tremors and limpy leg, I can only imagine what ppl must think of me. I have meds for the tremors but I cannot take it and work because... whoa! Its quite ... debilitating! to say the least! On top of that, I have anxiety, fibro and twice a year mammo's for a nodule that was spotted. I'm a walking (proud to say that for now) ball of mess. And to think, my mom is getting to the age where I should be taking care of her... maybe we can be roommates in a nursing home someday! I wish you the best triara.
  • triara
    I have a very heavy lesion load on brain, brain stem, and thoracic spine.  My brain and the rest are like swiss cheese.  I suppose it could be worse.  I can walk even if I can't multitask any more.   I might not remember where I am going, but I can get there under my own power.    system crashes and has to be rebooted frequently.  I want to defrag my brain.
  • Erika_Anne
    http://erikasmsblog.com/2011/08/ms-feel/
  • Bobo
    When someone close (family or friend) doesn't accept limitations, I have given explanations several times and then backed off from them when they continue to push me. I set my agenda for the day according to how I feel and refuse to let someone else guilt me into doing too much. Sometimes you need to let go, and walk away from toxic people.
  • Donna_Lee
    I too wish I had a better support system.  When I was diagnosed my children were 19,17,5, and 3.  I had been having symptoms for years so already I was frustrated with vertigo and fatigue that no one understood.  When finally diagnosed, by husband's reply was "you don't have MS".  He had previousl helped take  care of a man that was permanently placed in a hospital because of his MS.  I know it was denial at first, but even now when I have and exasberation he does well cooking and cleaning, but just isn't there to support me emotionally.  He was definitely not in favor when I had to quit my job because of cognitive issues.  I have tried to explain different symptoms to the family but they really don't seem to care and they don't enter the conversation.  When the TV is on loud and lots of people are talking, I find it too much to process and I start to feel dizzy.  No one gets it. 
  • c_squared
    I so get "too loud"; My husband has been wonderful with this disease for 12 years but yet in the beginning he too said "you don't haved MS" Until I went thru a bad bout a year ago did he get on board. You can explain and explain but they never really get it; not sure I would unless I lived it and so may times there really isn't any good words to express what we go thru. As much as they do want to be there for us, they just don't understand.  MS is a lonely place but in the same sense; makes me stronger within everyday because all I have is me really. It's kinda of like life; your born alone, you will die alone and for us in between those events - we struggle alone. God know's though and he does understand.  :)
  • Marilyn1
    I had to be disabled from my job due to Cognative and fatigue.  Also suffer from vertigo.  It's always there, somedays worse than others.  it is so hard to explain.  Especially cognative, since I am unable to understand it myself.  but I feel your pain, regarding loud noises bedcoming overwhelming.  Even multiple people taling becomes too much.   you can explain over and over again, but it is not remembered or understood.  I use to be a people person, but now I prefer to
    be alone in quiet.  I cant even handle shopping or driving during heavy crowd times.  
  • katvilc
     katvilc-
    It's hard when the people who are supposed to love and support you the most are the furthest from you during your health trials. I believe my husband thinks i'm just being lazy when I tell him about my current challenges with MS. He most recently accused me of homeschooling our children to get out of work when they were young, very false statement. The children have developmental disablities and the public school teachers in the school they attended, didn't take their learning needs seriously. Interestingly enough, my husband was the one to suggest homeschooling because the wife of his friend  did homeschooling with their children. Now 25 years later I am labeled unsupportive and lazy. I have over the past 25 years tried to be a support to this man through his 2 shoulder surgeries, raising two children and my fighting MS in the middle of all the other trials. I am currently trying to recover from knee surgery and the pain has envoked leg muscle tightness when I walk. I am not getting any real emotional support from him, his only concern is that I return to work and regain finances for the house he just purchased. Our children are needing to return to college and find new jobs but, are having a hard time because of a lack of support from my husband. He's become very verbally abusive and is constantly threatening to leave the family in dire straits. We just move cross country to Kansas City KS where the weather has been unusually hard. I have extended SDI benefits for 3 months but, that's our only finances to handle bills. His statement to me recently was that he feels he is always bailing the family out of negative situations, namely financial ones. I thought supporting families was parts of course for a husband/father. I am confused. 
  • kaoballard
    Trying to example to family what symptoms is difficult, it's like you suddenly have a disease they can catch. They just don't get that "congnitively" I just am not able to connect. It's hard to keep up with conversations and activities around me. So then they wonder why I turn down "invites" to events, it's just too hard. Good luck and thanks for sharing. It's nice to know that I'm not alone.
  • Bobo
    Remember pick your battles? It comes down to similar situation: pick your support team. Often family members don't understand what is happening that's unseen, so it's a pick you time to explain. Some family members will be supportive and some will never be supportive, doing more of the "just fight harder to beat MS" remarks. I limit contact with them as much as possible, and consider the source if their remark offends me. Friends often make for better listeners, easier conversations about living with MS. They already like you!

    Consider talking with your family physician/neurologist about possible depression and options for yourself. After 12 years of thinking I didn'tt need antidepressants, I began one a year ago. Wonder of all wonders, I'm can think through situations that made me question myself before, and can handle the odd situations that may be due to MS. I've increased my activity levels, joined an aerobic water class besides walking with spouse. Walks are a good time to chat about how life feels right now.

    Also, find a good support group of people with MS. You may have to try several groups before you find one that fits your needs. Your local MS chapter office will have locations and times for meetings-venture out to see what other people with MS are saying and doing to adapt to living with MS. Congratulations on reaching out to others in Connections-there is a lot of support for you.

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