Feeling a tad inadequate

[Thinkimjob]

I've been feeling so guilty this Christmas and New Year. I have avoided as many meals out and parties as possible.

I'm a lot worse walking-wise than once I was (nearly poetic, that). And I'm soooo tired.
Seeing people who haven't seen me for a long time, I can see they're a bit taken aback.

I can see it's hard for my family to see me like this, and for them to explain (or not) to other people what's going on. I know this is what goes on as soon as I leave the room. Yes, yes, but just because you're paranoid doesn't mean you're not being followed.

So, here's the question, do you blurt it all out, do you fake as much of it as you can, or do you make up an excuse for not going, or staying too long?

I know we have to look after ourselves, but I can't put myself first because I already feel so bad about what my disease is doing to the people I love. So I feel like I have to act healthy.

Never mind. Holidays over soon, thank heavens.

[Whimpurr]

I know how you feel and I haven't officially been diagnosed yet. Also, my gait is sometimes "fine" to the untrained eye but when I do have balance / walking issues, I can tell others are like "what the heck"? One example was on Christmas night at my MIL's house. I stood up and almost fell straight backwards. My niece just laughed and me and I kind of just played it off as well. I just don't know what to say and when or how to say it. I suppose once I am officially diagnosed (assuming I will be) that I will just try to explain as it becomes more obvious.

[JerryD]

It is always difficult to figure out when and to whom you need to discuss your illness with. You need to talk about the disease only when it is comfortable to do it. I am sure you will find the correct ways to do it. Good luck

[Thinkimjob]

Hello, and thanks.
I think most of the English speaking world knows I have MS by now.
It's more trying to hide the progression these days, which let's be honest, is like trying to hide a giant wart on your nose.

One cunning plan was always to arrive early and be seated (near the exit or the bathroom, both if possible) before anyone else turned up. Close to the wall, but at the end of the table so I could escape when necessary.

I've done the "it's really not as bad as it looks" thing, because a blast of "yes, it's *%#*?#* terrible, and I feel like crap, thanks for asking" might be construed as a touch impolite.

Hey ho. Off to the pharmacy and supermarket I go. Will the excitement and adventure ever end?

[lstrl]

I've not been diagnosed yet (hopefully January 11 will be my day), but I feel a lot of the same issues as well. So many things that I used to do all the time, I can't anymore. Even when people know (but don't understand because they'll ask me to go shopping or do something that I have no energy for anymore), I make up excuses why I can't go instead of telling them the truth. I know they see it when they're around me, but I don't want anyone to know how bad it really is.

Ever since I started having problems, I've done everything that I can to hide it. Most of the time, it has been easy, but even then, it's quite frequently that I'll lose my balance and people notice. Even the ones who know what is going on will laugh, and I hate it. There is nothing funny about having your equilibrium snatched away from you.

Everything that this horrible disease has done to me is completely embarrassing. I live alone (although I don't know how much longer I can, and I'm only 27), and anymore, I will only leave my house if I have to. It's a lot easier struggling where nobody can see than to be out and have people stare at you because you walk like a 90 year old would.

Whenever someone wants me to go out, I usually "forget" to reply to their messages or I'll tell them I'm too tired or I've got something I need to do. I'd rather them think I'm blowing them off than to know what is really going on. Unfortunately, now that my mom knows how bad things have recently gotten for me, she has told everyone she knows. That is exactly why I hid it until I couldn't anymore. I want people to think that I'm normal, and for the most part, that's not an option anymore.

[aitch10]

At first I was fine, then I faked it, then I made excuses for being a clutz - always being open about having MS but not wanting to fess up about the severity - then I'd make excuses for not going out, then most of my friends gave up on me.

Currently I am coming to terms with being a cripple and trying to get out more, to make disability a sidenote like being short or having brown hair. To that end I am trying to get out more and let my friends know that I'm still here

[Thinkimjob]

You're onto something there, aitch10. That really is good advice. If we can deal with it, so can they. and if they can't, then too bad.

When I think of all the energy and effort I've wasted trying to fake good health, when there really isn't any point, I could smack myself in the forehead.

I'm sure I will feel much better physically, and mentally, when I stop trying to be Superwoman.

I don't know how much of the cracking hearty routine was to fool myself.

Good Lord, I do need a walking frame, I do need a shower seat, I do need help round the house - I am disabled. Wishing it wasn't true ain't going to make it go away.

Thank you! I've finally seen the light!

Mind you, I probably wouldn't be saying this, lstri, if I wasn't visibly, obviously, undeniably disabled.

[SunshineDaydreams]

I was dx last summer and I kept thinking I was going to get back to work soon and life would be like it had always been after these symptoms would hit me (not knowing what it was for so many years).

It never happened. I tried to live my life anyway - learning one by one the things I could not longer do: I gave up on the concerts my dh and I love to go to and days off at the farmers markets because I can't walk that far, gave up on going out with friends and family because I had to cancel so many times because of relentless fatigue, even had to give up my little side business and taking care of my bills because of the cognitive problems that caused me to make SO many mistakes.

I'm still learning how to live - in fact, am being evaluated for manual vs electric wheelchair this morning (trying to convince myself I can do more if I get it). I'm finding I'm a lot more comfortable and better to handle my day if I am home, but there is more I want to do.

When I do go out, I don't make excuses for myself - this is me and I have to live with it. If people ask, all I will say is honest - I have MS. I try not to say any more.

[mercadies25]

Well I only go out with the close friends and family. I fake being healthy as much as possible, but when I can't fake it I stay home. no one but my dh suffers those consequences. Just survived 1 1/2 months of a relapse.

My friends and family already know about my disease and if I'm out with my cane, or walker I tell my kids and friends if they bring someone new, into my circle of safety, they are responsible for telling them. I am not ashamed and will answer questions if someone has some, but I don't want to talk about it all night.

I tell ppl look it up on msaa web-site and you can learn about it if you would like.

I SHOP ON-LINE AND HAVE PRESENTS DELIVERED SO NO MALL OR WAL-MARTS FOR ME.

Good luck!!

[Tomjadg]

I pretty much stay home. My wife and I might do breakfast or dinner.
I don't get involved with family activities because it is just too hard, and I don't want to play "50 questions" with everyone.

I just had an 81 year old wife's aunt call (never talk to) and said "I heard you were sick". Since she was having a tough time hearing, I just told her I was fine.

I pick and choose who I want to get unto details with.

[owlnona]

I've never minded sharing about my MonSter,untill I went to see a new Dr.( unrelated to monSter) He walked in the room stopped looked me up& down & said in an accuseing voice, "Why are you in a wheelchair?" I was so stunned I almost couldn't speak.Did he not read my chart? well it kinda went down hill from there,to say the least I'm NEVER going back to him again,
. Never feel inadequate,people ask questions,I always answer simpley. "I have MS" If they want to know more I tell them. I never feel the need to explain why I'm not going some where or doing something. My family & good friends all know & call & say " Are you up to "such & such"?
never question if I say No!
Keep us posted God Bless OwlNona.

[Whimpurr]

I think that once I am officially diagnosed, it will make my family more informed .... right now they just don'T totally "get" what I am going through.

[alishape]

Hang in there

I hope you take the risk sometimes thinkimjob. This disease seems to take things from us one at a time, so you might miss something now that you can't do later.

I have never really paid much attention to what other people think or say. My ex used to tell me she thought I might have some sort of autism spectrum disorder because I'm so oblivious. In my case those MS has made my nerves so bad, (no pun intended), that avoid social situations somtimes. My tolerance for noise and other people has gone down considerably since my dx. Still, I went to a football game with my cousin last month. I was afraid because I knew it would be very loud. Strange drunk people want to befriend you and touch you at football games just because you're both wearing the same colors. Plus, and this was the most frightening possibility for me, if I have the cog fog I can't follow the game.

I almost talked myself out of going, but I went anyways. We won! I almost missed it. If you never go to family get togethers you will miss the good mac and cheese. That's a pretty big sacrifice.

[Tiggerish]

"it's really not as bad as it looks"

This is one of my favorite and frequent phrases when I am around family and friends. The truthful translation would be, "it hurts, it is awkward and is worse than you will ever understand but I am pretending to make you feel better".

[How bizzare]

Telling People

I've been feeling so guilty this Christmas and New Year. I have avoided as many meals out and parties as possible.

I'm a lot worse walking-wise than once I was (nearly poetic, that). And I'm soooo tired.
Seeing people who haven't seen me for a long time, I can see they're a bit taken aback.

I can see it's hard for my family to see me like this, and for them to explain (or not) to other people what's going on. I know this is what goes on as soon as I leave the room. Yes, yes, but just because you're paranoid doesn't mean you're not being followed.

So, here's the question, do you blurt it all out, do you fake as much of it as you can, or do you make up an excuse for not going, or staying too long?

I know we have to look after ourselves, but I can't put myself first because I already feel so bad about what my disease is doing to the people I love. So I feel like I have to act healthy.

Never mind. Holidays over soon, thank heavens.[/QUOTE]

People don't understand if they don't have it. It's that simple. Sad to say, but they just don't get it.