Tired of everything

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Heather H.
Veteran Member


Date Joined Mar 2005
Total Posts : 756
   Posted 12/1/2008 9:43 PM (GMT -6)   
Hey all,
 
Do you ever get tired of all of it? I cringe whenever I have to tell someone what is actually wrong with me.  I ALWAYS get one of 2 looks.  It's either pity or disbelief. Most people don't understand me in my family and friends. I am the only one in my family that has MS, and everyone just kind of blows it off or goes overboard with concern.  One of my brother runs around town, telling everyone that I made it all up, one brother treats me like he always did and it's no big deal. Then my other brothers wife goes overboard. I love her to pieces, but she is always telling me to sit down and slow down and take it easy. Even my husband waffles in how he treats me.  One day I am fine and the next I can't even carry a laundry basket through the house cuz he doesn't want me to hurt myself. Then to top it all off.... My mother and I work for the same company, and she has pushed me out of my job so that she can have all of my hours cuz she got laid off from her full-time job.  
 
I barely even leave my house cuz my mother has run all over town and told everyone that I am sick.  I go shopping and someone is always asking me how I feel and have I gottin any worse.  I won't even discuss things unless it's with someone I trust and who knows everything that I have gone through.  This has been going on for over a year.  I had hoped that this would be old news by now. 
 
Sorry for the long post. I just needed to vent and this is the only place I have where I feel sure that I won't be judged and told to shut up and stop whining.
 
Heather
 
 
Love many, trust few, always paddle your own canoe!
 
dx's:  Fibro, 8th cranial nerve inflamation, MS.
 
meds.:  none at this time
 
 


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 12/2/2008 8:22 AM (GMT -6)   

Hey Heather,

It is good to see you here.  I am sorry to hear of all your troubles and especially the ones related to work.  You are such a hero!!!  You are a mom and a wife and you work and you have MS.  You go girl!!!!  Whine away.........we are here to listen and affirm.  It can be really awkward they way others deal with your MS.  It sounds like you are running the whole range of reactions.  It can make your head sping, the way people react.  Then again my head is always spinning LOL. 

Hang tough girl.  Know that we are here for you.  Come back to chat........we miss you.


Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


KE08
Regular Member


Date Joined Nov 2008
Total Posts : 92
   Posted 12/2/2008 11:00 AM (GMT -6)   
((HUGS)). I can relate to just about everything you said. I don't have MS, but have other health issues and its amazing how people look at me. So I don't explain it anymore. I come here and post or got to the chat rooms. I try to keep my head up..some pople just don't get it and never will- UNTIL/unless IT HAPPENS TO THEM OR SOMEONE THEY REALLY ARE CLOSE TO. Don'T WORRY about OTHERS.. KEEP DOING YOUR BEST. GOD BLESS- you will be fine:+)

purpur68
New Member


Date Joined Nov 2008
Total Posts : 3
   Posted 12/2/2008 12:19 PM (GMT -6)   
Hey Heather,

I'm sorry to hear that you are having a rough time. MS is very hard to live with especially when you don't "look sick"! I've been off work for 2 weeks with optical neuritis...but I don't look sick so my coworkers are very judgemental! I am lucky that I do have a supportive husband, but yes he does also treat me like I'm fragile....I'm not!! Be strong....the power of the mind is a wonderful thing.

jirish
New Member


Date Joined Dec 2008
Total Posts : 18
   Posted 12/5/2008 2:17 PM (GMT -6)   
Hi! I am a new member-this is my first posting. I was sitting at home today not feeling well, legs not functioning - that feeling that someone is twisting all of my nerves inside and completely depressed because I have no one that understands. Then I saw your post "tired of everything" and I thought that is exactly how I feel! I'm tired of people not understanding because the symptoms of MS are not always "visible". I'm tired of people thinking I should just "snap out of it" and most of all I am tired of that feeling of being entirely alone at home with no one to talk to. So, that's what brought me to this forum and reading your post and some of the others at least I know that there are people that completely understand! Please don't feel like you are whining or being judged. I completely understand your frustration!

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 12/6/2008 8:09 AM (GMT -6)   
jirish,
 
Welcome to the forum.  You are absolutely right, unless we are wheelchair bound, MS is not big deal right?  Wrong.  But people don't understand nerve pain, spacticity, bizarre sensory stuff, balance and vertigo, bowel and bladder issues because they can't see them.  it can be very disheartening.  That is why we are here.  There is something so therapuetic about venting to someone who truly gets it.  Thanks for posting and again, welcome to Heallingwell. 
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


odettesmom
Regular Member


Date Joined Aug 2004
Total Posts : 274
   Posted 12/7/2008 6:16 PM (GMT -6)   
thank you for the vent!! i need that too! know exactly how you all feel and it ain't pretty. why is ms such a mystery? i hate the patronizing as much as the ignorance. just began volunteering as a lay visitor at a nursing home nearby. had one of my stumbles that happen all the time, but the cane invariably catches me. now the head of volunteers told me to stay home if i'm not feeling well.....GRRR! just about a year ago went w/friends to my favorite restaurant for the holidays. froze up when i saw everything twice. tough to read menu or visit salad bar when you can't see. going next week, and i'm scared it will happen again. friend dutifully told me it couldn't happen twice when i just wanted her to say she'd help me if it did occur. GRRRR! must be worse when it's siblings refusing to acknowledge how you feel. somehow it was easier when i did have a wheelchair after fracturing my ankle when my ms leg gave out. all makes me want to shut down phone and just stay put. linda

bohuck2
Regular Member


Date Joined Dec 2008
Total Posts : 196
   Posted 12/31/2008 10:55 AM (GMT -6)   
Heather,
I know exactly what you mean! Too bad that MS is not respected by everyone because they aren't real familiar with the symptoms of it or just exatly what we go through with it! Sometimes I feel like I want to quit all treatments and just take what comes to me but then I think of the others in this World who have it and tell myself that just maybe I will be the one that gets the treatment that cures MS! I have had to bring my boss and my HR Rep up to speed on what actually happens when you have MS and they have been very good to me here at work. Thank God for that!
I sometimes get tired of explaining MS to people also but then I only have to remember that most of the people don't know anything about it so I explain to them as much as I can about it. One thing that I fouind out is that I do have trouble telling someone just how I feel, that's very hard to explain in my opinion. Maybe someone will have an answer for me on that? Take care and have a Very Happy New year!
 
 
 
 
                                           Chuck Huckaba
                                    AMWTP Training Instructor
                                          Idaho Falls, Idaho
                                  Diagnosed with PPMS May, 2007
                                   but still working at the present.         
                Tried just about everything there is for MS, including Tysabri
                               Waiting to start Cytoxin Treatments soon.


2Tired
New Member


Date Joined Dec 2008
Total Posts : 17
   Posted 12/31/2008 3:59 PM (GMT -6)   
Heather, I am So Sorry You`ve Been treated so Badly. I know Exacly how you feel! It`s So Frustrating. "Well You Don`t Look Sick,Very Nice in Fact". I like to Dress up when & if I go out Cause it Makes me Feel Better & gives me more Confidence. Anyone know what I mean. "Your not acting Sick"ECT..... AAARRRGGG!!! If I acted Like I feel today,I would have never gotton out of bed & gotten Dressed. Bad Pain,Shakes & Bone Tired. And I`d be Crying & Miserable.No Company for anyone. I Hate to Complain,Im SORRY but I think if it`s safe to vent here you can say how you Really Feel. I hope & Pray Everyone Gets a Clue & Start Treating you Better. Take Care & Be Safe. Have A Safe,Painfree & Very HAPPY NEW YEAR! PEACE & FRIENDSHIP. Purple13.

bohuck2
Regular Member


Date Joined Dec 2008
Total Posts : 196
   Posted 12/31/2008 4:13 PM (GMT -6)   
2tired,
I feel for you my friend! People think we can do stuff that we used to do, I've got 2 words for them, (edited). I wonder if anyone on here has ever seen "The Spoons Theory" that explains what people with Lupus feel during the day? It fits us with MS almost to a T! Take care and God Bless! Have a Happy New year my friend!
 
 
Please remember that this is a family forum and we cannot use or reference inappropriate language.

Post Edited By Moderator (Gretchen1) : 12/31/2008 7:37:40 PM (GMT-7)


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 12/31/2008 8:23 PM (GMT -6)   
Hey Chuck

Tisk tisk tisk....remember this is a family forum. Please control the pseudo language...k?
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


bohuck2
Regular Member


Date Joined Dec 2008
Total Posts : 196
   Posted 12/31/2008 8:43 PM (GMT -6)   
Sorry Rhonda, got carried away because I get so frustrated when others don't understand that we cannot do things we used to do. It won't happen again.  nono   that's for me.
 
 
 
 
                                           Chuck Huckaba
                                    AMWTP Training Instructor
                                          Idaho Falls, Idaho
                                  Diagnosed with PPMS May, 2007
                                   but still working at the present.         
                Tried just about everything there is for MS, including Tysabri
                               Waiting to start Cytoxin Treatments soon.


2Tired
New Member


Date Joined Dec 2008
Total Posts : 17
   Posted 1/1/2009 8:40 PM (GMT -6)   
bohuck, Yes I Know the "Spoon Theory" Well. I agree it`s also perfect for people with MS & it helped me Explain my situation to A Couple of Caring Friends,Who wanted to Understand. In fact we use it when we discuss how Im doing on a Given Day or if I1ve Got Enough "Spoons" Left to Go out & Do Something. It really heled me. Heather just Clink on Spoon Story on google and you can see it. If ya want copies & don`t feel likr accessing it throu Goggle just contact me,I`ll email 1 to ya. Make copies & give them to friends& Family who seem clueless. Good Luck.Take Care. PEACE & Friendship. purple2

Conquer MS
New Member


Date Joined Nov 2008
Total Posts : 7
   Posted 1/6/2009 11:01 AM (GMT -6)   

Hi !

Funny how I just wrote a post in my blog about what you are talking about

Yes, your angry at their ignorance, lack of understanding, and lack of compassion.  There is nothing you can do to change them,

But...

You can change yourself.  Work on your mind, work on your self.  And you will grow and leave them behind.

Robert

 


Post Edited By Moderator (rhondab) : 1/6/2009 12:52:13 PM (GMT-7)

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