Feeling a Little Lost

[isamadjul]

Ever have the feeling like you have something to say and you don't know how to say it? I have been coming to this site for about a year now and for the last few months I have found myself lost. I read posts and sometimes respond but overall I just come here and leave the page open and stare at it. Unsure of what to type.

Its funny cuz I started to type nothing big has happened in the last few months to cause this disconnect but maybe it has. I have cut myself off the best I can from my mom (its really for the best) and I stopped taking my Beta. Since Aug. I have slowly started to "feel better" only to start Gilenya yesterday.

I just all of a sudden don't feel like I belong...if that makes sense. Maybe part of is that I was getting "sick" so often and now I'm not that I don't understand. I had to switch from a Neuro I really liked to another and I thought I really liked him but after yesterday I think I like his nurse I not so much him. For the last yr my life...my DH life...my kids life has been wrapped into me having a IV in my arm every couple of months and now its been 31/2 months and idk what to do...I'm lost. I don't understand how to not be "sick" when the last yr has been nothing but sick...

So I'm lost...I think... If you find me could you plz return me...

allyson

[Greg]

I completely understand. I get that foggy confused feeling allllll the time. Cant remember hardly anything. I have to make daily notes of what I want to get done or I forget to do it, even important things you would think that there would be no problem in remembering. I have found myself staring at a response page also wondering what I was gona say or "what/who said what?" that I wanted to respond to. I think my legs and my memory are in a contest to see which can screw with me the most.

You know I am only 38 and feel like I am practicing for alhztimers *sp*. It has put a strain on my marriage also. My wife knows I have memory problems but yet when I forget something that effects her she over reacts as if I am perposefuly trying to savatage her life.

Since we are talking about cog fog do you or anyone else feel pressure in their head. Here lately I have been felling pressure mostly on the very top and around the crown. Very odd feeling have just attributed it to the stains of trying to remember or simply part of my cog fog dizzy ditz.

But if you are lost no better place to be lost then "FRUITPORT" lol sorry had to go there.

[Lexie]

I am 61 and thankfully my children are grown and on their own. For me it has been a feeling of not fitting in anywhere. I don't fit in at work anymore and I have kind of isolated myself from a lot of people, but that is the only way I can cope. I think unless you have MS you can never know the feelings we have. We look good except when a bad resapse comes but it just seems as if no one cares. I seem to do much better going it alone that with people that think I am fine. I am blessed to have a wonderful husband who takes care of me. Without him I would really be lost. I hate crowds and really don't like to even be around my co workers any more. When you get diagonosed with MS (or any other disease) You find out who your TRUE friends are. I have about 5 people I confide in beside my family and that is all I need right now.
It's kind of a lonely journey but my faith will see me thru. Good Luck. P.S. The people on this board have helped me tremendously. I know I can always come here and they understand!

[valeriem2220]

I too feel this way.
I really do not have anyone to talk to, simply because I don't want to burden my family or friends with my "whining" at least that is what I believe they will start believing I am doing when I talk about it.

I so badly want the people in my life to understand how I feel every day, but it would be a different report for them every single day, and WHY do I want people to understand so badly? I do not know.
I have also just isolated myself from friends, family and coworkers just to save them from it all.
I am starting to think I will see it as my talking about MS will burden them because I feel so strongly that MS has burdened me..

My ex-husband, who is my best friend, will ask me..."How are you feeling?" and my answer is usually just..."It's a bad day" or "Its a good day" and if he wants to know more I wait for him to ask.
I didn't think I would feel so alone through this, and I am only a little over a month into my diagnosis. How am I going to feel in a year?

[moom9335]

My adult son has MS. It is progressing rapidly in just over four years. He has been so proactive, brave and tough. But, the symptoms have taken his life away as he knew it. He can no longer walk, hardly sit in a chair because of the spasms in his spine, and generally losing all quality of an active life. He has tried every type of mind control to get himself through this trauma. Each day is a struggle.

I can say that I understand, but how can I? I get what all of you are saying about isolating yourselves because, really, hardly anyone can truly know what you are going through. My heart is broken, and every waking moment of my life is filled with pain and sorrow over what has happened to my son. If I wake in the night, my first anxious thought is of him and how he is suffering.

I want to scream at the world, strike out at anything I can, get angry when people complain about their really petty problems, and not appreciate their health. I now live two lives...an inner one of pain and no solace, and the outer one of a "pretend" face. I try to be grateful for every day that I can hear his wonderful voice, but his struggle is devastating.

There are no words to help or sooth this pain. So, I get where you are all at....and, I wish that I could trade my health for my son's MS. But, it looks like no deal.

I can only hope that somehow, sometime all of you will be helped. It doesn't really change anything, but yes, those of us who really love you, "get it".

[piper.tillie]

Allyson:

I don't have much to offer since I've only been diagnosed since August. Well, actually, I've felt the same only opposite. I had one flare (optic neuritis) and was diagnosed over the course of two weeks. I keep feeling like I should be sick but I'm not and I hate feeling like I'm just waiting for the other shoe to drop.

Anyways, I see that you're in Fruitport -- I'm in Muskegon. What a small world. Let me know if you might be interested in talking in person.

Angela

[1936siol]

Lost

isamadjul We are all very similar yet very different with our experiences. For the first several years I had MS I lived alone so I didn't talk about it much with anyone. I knew it was something I had to live with so I did. I grew up in a family where you didn't complain about problems, you accepted them.

Back in the 60's and 70's very little was known about MS so I just accepted it. If someone asked me how I felt I was always just fine. I walked with 2 canes for 35 years because I refused to give in and use a walker. I have sinse gone to a walker and it looks like it will be a wheelchair shortly. It is always unconfortable but I rarely think about it. I have accepted it.

I honestly haven't felt it has affected my relationship with others. We just laugh about how differently I do things then others. Sometimes they even try to imitate me. I find that for the most part people are kind and understanding. Maybe that is because I usually joke about my condition. I know it is hard to accept MS especially when you have a husband and children.

Lois

[maximumlite]

Allyson,

I can relate to what your saying, I feel like I want to answer a post and than sometimes I think I'm sure someone will have a better answer than me and just keep coming back to see what other people say, sometimes I feel like I've lost myself and don't know why.

I'm sorry to see you lost your neuro as we have the same one, I hope you got someone at the same place. I'm doing the pulse steroids like you, but my kids are gone and know it must be hard on you for the kids to have to watch, but it will probally make them great caregivers when they get older.

I hope the new neuro works out, I'm not sure what I would do if I lost him, maybe just because he gave me the DX I feel I need him but he seems so good and shows that intrest in helping me.
Good luck with the new neuro

[502E79]

Hi Allyson,

I've been @ MSW a few years. It cycles... as new names replace old, the familiar questions, worries, concerns, fears.

I too sometimes respond if I feel that I can contribute a bit of true empathy or information.

Your "lost feeling" may come from beginning a "new" stage... in treatments, with relationships (mom), a new neuro, leaving the familiar routines. And...

not understanding why you're feeling good, yet, about to embark on a new journey. A journey which you dread will again result in simply not knowing how you feel... or feeling sick all over again.

Like a rat in a maze.

But looking at it as "endless" isn't profitable.

I read once that the greatest bankruptcy is the loss of enthusiasm. The author MUST have had MS. It is a thief in many ways. If you feel lost you are not alone!

Focus on family. What you can do for them. Focus on nothing other than giving. You will find your old self.

Jer

[isamadjul]

Thank you for your replies

Its always nice to see someone has read what you have typed and that they have taken the time to respond. I know at times we all feel lost or alone in the MS world of ours. We all walk (or roll ) a different path in life. For me right now maybe it is just the first yr blues...who knows?

As far as my mom..."family" besides my DH and kids its FAR, FAR less stressful to not have them in my life!!! I have tried to be strong for years and cut her out and I must say that MS gave me the strength to do it!

I am on my 3rd Neuro. It was the 2nd one that I really liked. She treated me like a person NOT like a patient. There was even a couple of times when SHE even called me at home to make sure I was feeling ok. This Neuro well he seems nice and smart, he doesn't seem to think of me as a person. I started Gilyena on Monday and I also made a appointment with him...well lets just say I better not find a bill in the mail. I waited almost 3 months, could've started G a month sooner if I hadn't wanted a appointment with him on the same day. Only to be pushed back and not be seen. He would only take over some of my meds and there was no talking to him about my meds at all. It was all through his nurse. The point was to talk to him so that I could start a different pain med besides vicodin. Now he isn't even doing a pain med for me. His nurse Amy is the nicest person, but on Monday he made me feel like less then a patient. So much so that if I work out on this med and all goes good I will switch back to Neuro #2.

My eyes have been "funny" again WHICH TICKS ME OFF!!! After months of not driving I finally worked up the nerve to try to start it again and my eyes are going weird...so back to no driving. GRRRR!!!

ANYWAYS life goes on and like I said we all walk or roll a different path in life. At times it really sucks and right now I feel lost. Right now I'm emotionally messed up for whatever reason. The first year blues, the season, being a girl... who knows. All I know is that I feel better that I finally wrote that I feel lost and that someone typed back. So...

THANK YOU for taking the time to read and respond.

allyson

[Lexie]

Hang in there girl and come to these boards to vent. I feel that it helps me vent here instead at my family.

[sulphur kennel]

I too feel like I don't belong anywhere.

Maybe we should all get together. I look normal, and on my really good days I even feel and function almost normally. But on the days no one sees, I am far from normal.

I get looks when I use my HC card and walk normally through a store. What is not seen is the next day when My body feels like I need to catch up on the energy I used the day before.

I get looks when someone asks why I quit teaching and I tell them that I am on disability. What they don't see is how I would lose my place in my lesson, forget what the answer to the question I just asked was, or tell a student something totally wrong.

I don't feel sick, but I don't feel healthy either. I have 2 friends and my husband that I tell things to. My daughter has pulled away from me and has turned her back on the belief system she was raised with so now I am not as close to her as I once was, my son has moved away, I don't want to worry my parents who are in their 70's, so my few trusted friends are my support group.

I do feel "lost" in the sense you said. I hope you are "found" soon. Good luck and if you see me out there wondering around point me in the direction of a place where I will fit.