Pity Party - I can't pretend it's all good after today :(

[Erin0313]

  Hi everyone thanks in advance for letting me pour out my self pity here

  I went to a wedding reception with hubbie today and everything I did was a reminder of my MS and not being normal. Now I am feeling sorry for myself and hubbie says you looked fine and like you were having fun to me so just let it roll of your back. I can't and I'm tired of him saying that. I want to say you try it  for a while and see how hard it is!!

I dumped a glass of ice all over the bar and the guy next to me said here just give it to me as he took the cup out of my hands.

I couldn't get the hands working in the food line to pick up all that "finger" food with a fork and some man was tapping his foot behind me so I just told him that I am really slow so please feel free to go around me - it still hurt

They built a beer can pyramid and my leg jerked and hit the table and knocked it over. Nice guy friend said no biggie just cans I will build it again but hubbie said you did that with your foot you know and you are going to do it again if you don't move.

I was standing talking to a girl friend when my hand decided it wasn't going to hold the glass of Pepsi anymore so I basically ended up throwing the thing at her feet when my hand opened. She didn't say a word but she does my MRI's and knows and I saw the look on her face.

Everyone else was drinking ( I am the DD) and they wanted to stand in the middle of the room and chat for hours. I can't do that so I finally had to find a seat and sit alone because I just couldn't stand anymore

A friend got upset with her husband for looking at her chest while talking to her and I said no biggie I was looking at the "girls" too. She blushed and he laughed and then told everyone. She shouldn't display them like that if she is going to angry but "normal" women would never have said that!!

NOT a good day and then after driving the very appreciated (they were) drunks home, hubbie starts saying that friends invited us away for a weekend and we didn't go last time they asked so we have to this time. I explained that I would like to but when you put pressure on me like that I can't stand it. He is not happy with me now and I'm not happy with either of us. I am angry at my MS, feeling sorry for him and myself and hurt by him also.

I'm suppose to go watch him bowl in the morning for charity and now I just want to crawl under the covers and stay there. If he doesn't appreciate my efforts and I feel like cr@p after socializing than why do it?

Hope you are all having a better weekend!
Hugs,
Erin :)

[Erin0313]

Shell,

   Thanks for admitting that you would have said that about "the girls" too! Now I have you and Jess on board and I don't feel like I am as out of control with my runaway mouth, lol. I do hate it when ppl think I am drunk and I get it a lot. I would hate to see what I would be like if I did get drunk instead of being the DD, lol.

Michelle,
  I am very glad that you landed here to! I wish I had a great place like this when my journey first started - wow what a difference it would have made.Having ppl look at you and think your fine is a blessing and a curse. I want to look well but it just makes it harder for others to "believe" what you are living with.

Have a great Monday & thanks ladies!
Hugs,
Erin :)

[michelleislay]

erin!!

what a night!!!  oh man, it all happened at once didn't it?  the part i hate the most is that you had to find a chair by yourself as everyone else just stood around and talked, blissfully unaware of how difficult it can be for some to do that seemingly simple thing.

i dont' know where my road is going to take me, but i am so glad to have landed here to at the very least gain some compassion, knowledge and understanding of what this disease is all about.  i struggle so much with the fact that in everyone else's eyes, i look just fine.  i know quite a number of people can't seem to understand what is wrong.  it's a hard thing to deal with and i'm only at the very beginning of my road.

thanks for sharing your story erin!!

xo michelle

[sllowe]

I can SO relate! I hate that people would think I'm drunk when I'm not because of these sorts of clutzie things. Though I would definitely have said that about the "girls,"no matter what, and it gives all something to laugh w/you at, lol

I often wonder what is worse, people thinking you a clutz, or a drunk, or feeling sorry.
Feel for ya girl and have been in the same perdicaments. I try to laugh it off most times.
Glad you are feeling better. Not all DHs get it - think they don't or can't see what we feel.
(((hugs)))
-Shell

[Erin0313]

  It's bed time here and I'm glad the weekend is over. When dh got home from a day of bowling and then a football garage party with the boys at around 9:30 he was very upset that I had logged him off of the computer and was logged on to my Forum.

I am proud that I kept my cool and just quitely showed him how to switch users and that all of his stuff was still open so that - get this, he could check his fantasy football scores. Yep 7-8 hours of football wasn't enough!

I know that you are right Pastor Dan. It isn't easy for him to accept either just like him being out of work for 3 months and finally getting dx with diabetes this year has been hard on me. The difference I guess is that I do understand what he is going through and have been nothing but supportive even when he makes bad choices like eating sugar and drinking beer several times a week.

Thank you all so much for your advice and support. I am feeling a bit better and I am looking forward to crawling all of the way out of this hole of depression as the new work week begins.

Hugs & Thanks,
Erin :)

[PastorDan]

Just a quick thought before I must turn in.  My relative ease accepting the cane, nearly asking for a second one, learning not to commit to activities, etc. was all probably a result of the years -- many years -- I spent learning to deal with Loretta's limitations, which involved a great deal of physical difficulty, but a lot of emotions as well.  You're having trouble accepting all of what's happening to you, and I think that's very understandable; you've been through a lot.  What's as hard to accept is that your hubby can't accept your problems any faster or more serenely than you can accept them yourself.

Now I gotta call it a week.  Peace & blessings to all.

[Udkas]

If you have someone close you can go have lunch with, some special indulgence with and pour your heart out to, some  "you time", if not grab some cake (always makes me feel better), chocolate, put your feet up and listen to your favourite music and pour your heart out on here, it is great to release what you are feeling.
I know what you mean too about friends, you don't want to tell everyone as it can be arkward and even when you do some just don't get it.
When I had all my burning, I was so depressed, so upset, angry and I tried telling one of my friends and I think they thought I was just making it up, I dont think they understood the chronic nature of what I was dealing with, I used this forum a lot, and people listened and cared, and you were one of them, your words of comfort, wisdom and just caring made a difference, I could whine, whinge, complain and people cared and understood.  So Erin if you have a bad day, msg me, complain on here, we get it. Every person on the forum understands how you feel and has prob felt the same at some stage.
Sorry you are having such a horrible time at the moment, I hope tomorrow is a new day with a fresh start.
Thinking of you, lots of hugs,
Udkas.

[Erin0313]

  Thanks for the note & hugs :)

  I am beginning to think that my dh will never get it either. You are right that we need to listen to our bodies. I have been so happy with the social schedule I have been keeping up with lately. Instead of work, house work & sleep it has been kind of like if you didn't look close or know better you would think I was almost "normal".

Denial I think they call that. I have been acting like the pre-MS me. Of course I'm not healthy anymore and I should set limits.

I think I will mention to dh when the dust and emotions settle that one weekend day is what we should shoot for and like your dh if he wants to something on the other day he can do it guilt free without me. I think I actually feel guilty when I take a day of rest still and that is so stupid - why can't I stop? I'll work on that too.

Thanks for the reminder of setting limits - I needed to hear it from someone who gets it!
Hugs,
Erin :)

[figuerpa]

Erin,

I know exactly how your feel, I have problems as well. I can do something one day and the next day needs to be rest rest rest cause the fatigue from overdoing it the day before takes over.

My dh always wants to do things but doesn't realize that what I did the day before took a huge toll on my body and I need time to recooperate. I use to feel bad about it but now I look at it as part of my life and I need to take care of myself.

Now if he wants to do something the next day he either does it without me or doesnt do it at all, it is his decision. He means well it is just that he doesn't live with the pain, agony and dissapointment that I live with and I am beginning to think he never will.


The one thing that is important is that we listen to our bodies. We know what is going on and when enough is enough.

I hope you feel better and just know that we are all here for you and know what you are going through.

Hugs
Paula

[Erin0313]

  Oh how I love that you admit that you would have said the same thing about "the girls"!

  Comments like that can be a huge sorce of tension between myself and DH. Some ppl find it funny and others are shocked but I swear sometimes I can't help it my mouth really does run away before my brain says don't.

Thanks for being not normal too!
Hugs,
Erin :)

[Erin0313]

You are a sweetie pie and telling me today that I have helped you and made you feel better was the best thing that I could hear! It makes me feel happy to know that I have been able to be there for you - thanks for that :)

I LOVE that quote and wrote it down. We have a board at work that we post new ones every day and that is going up for tomorrow.

I don't even know who knows and who doesn't about my MS. DH used to get upset when I told ppl so I left it up to him to decide which "social friends" to share it with. Now I feel stupid if I say something and they have known forever. I think I'd like to wear a sign or something and just not have to figure out who knows and who doesn't. Maybe a t-shirt, I know we did a thread of ideas for those maybe I should look it up for a laugh.

DH was suppose to wake me up today to watch him charity bowl but he didn't and he had an attitude before he left so not a good day with us. Maybe a day apart will be good for us both.

Thanks for the support
Hugs,
Erin :)

[lovemy6monkeys]

((hugs)) Erin. I'm sorry you had such a tough time! I kind of dread having social occasions like that :-(

I hope you are feeling better today!
~Jess

p.s.- I totally would have made that comment about "the girls" too! That is funny! I'm not sure if that makes you feel better...I'm not completely convinced I'm 'normal' either :-)

[Udkas]

Hi Erin,
You have always managed to make me feel better, offer me some great advice and lift my spirits.  I think anyone dealing with a chronic illness has days of pity (it's allowed), why shouldn't you feel a bit glum for the life altering things that MS has done to you.  It's okay to feel angry and annoyed, and even annoyed with your spouse, but have your pity party day and then try and make the most of what you have.

I like this quote "the happiest people in the world don't have the best of everything, they just make the best of everything that they have."

Maybe you need to tell and be honest with your friends and tell them how you feel, and your hubby, tell them how you feel left out because you are standing etc., nobody has to leave you out or change what they are doing, I always sit at functions, I just tell people my legs are wobbly, I am tired, grab a chair in my corner and join me, so I don't feel lonely.  If people don't know you have MS they might think you are choosing to have a quiet moment alone, or that you are being anti social.  Be honest with your husband tell him how you feel, I always have a table to sit my drinks on, I find something, if I spill it so be it, I have always been clumsy but I have an intention tremor these days, so I do spill things..lol.
I think you just have to laugh about things, or you would go crazy but I know that is not always easy.  Your not alone, I wet the bed with my husband in it, now how bad is that, I did cry about it, but he laughed about it, made light of it, but it was our secret.

I think nobody would ever understand totally how you feel unless they had to deal with it themselves, as sometimes it is the small things that can embarrass you so much or frustrate you.  If you continue to feel sad, talk to a counsellor about it, but most people have days of pity, and why shouldn't you.  MS is tough on everyone, as it does affect the whole family unit, but it can bring you closer together too..
Hugs, not sure if I have helped but thinking of you.
Cheers,
Udkas.

[Erin0313]

Ren,

  I haven't got my cane yet. I am going to ask when I go to Cleveland Clinic in a few weeks - it's time one more thing to set me apart from the "normal". Always trying not to give in another step.

What's worse your DH being embarassed with yours or me not having one and sitting alone because I can't stand with them?!

You can wack her with your cane and I can "accidentally" spill some pepsi and dump my cake plate on those nice party close. That's a funny image to take to bed!! Now who stands out from the crowd, ha ha!

Thanks for the smile & laugh on my way to bed. I will try and remember to talk to DH on a non social day because I know that you are right his buzz and my tough day don't combine for a serious conversation.


Big thank you hugs - you are a doll!
Erin :)

[rendean]

Dear Erin,
Glad I 'm at your party. I just found some new entertainment. The guest who pointed out the butter will be our first pinata. We can take turns trying our darnedest to hit her with our canes. When we're done we can check in to see how much etiquette lessons are for this obviously deprived (or depraved) woman. The last one left standing wins (doesn't matter if we actually hit her) :-)

As for trying to talk to DH, I've found it best to bring up the subject after some time has past and certainly after the alcohol buzz has worn off.

Hang in there and KNOW , WE UNDERSTAND!!!

Ren

[Erin0313]

  I was at your party :) Thank you so much for coming to mine! I am sitting here crying now because you answered so fast and you DO get it!

I tried to explain on the way home that I have trying very hard to socialize and go places and while I do have fun he needs to remember that these events take a huge toll - just don't think that I can always do these things because we never know from day to day. I said make as many plans as you want by saying something like put me down for a yes and Erin as a maybe if she feels well enough she would love to come

He just got angry and said well I thought you were fine all day and now you are making a bug issue out of it. Sometimes (today) I wonder why we bother explaining! I think he wants to live in denial as long as he can and I CAN'T anymore.

I forgot to add one thing - you mentioned eating cake - I did and I must have been a little piggy because a friend at the table said there's some butter over here if you want it. Like wow woman you are a hog. Well darn it I needed the sugar buzz to keep up with these normal party ppl.

Any of these things would usually cause me a pang of sadness or anger for a few and then as you know we move on but too many in one day brings you so far down physically and emotionally I can't even fake it.

Thank you sooooo much for being here! You're hugs really helped tonight.

Hugs & thanks
Erin :)

[rendean]

((Hi Erin))

I so know about the pity party scenario. I can't remember , did you come to mine the other day? I think you did come and were a great supporter. Among other things I , too, went to a wedding. Bad place for us MSers who have trouble holding on to plates of food while walking with a cane.

Then the spilled  drinks came into play as well. It doesn't matter I  people know your condition, they still do not understand what it is like to live in our shoes. DH asked why did I bring my cane in, certainly not for attention. Then he got mad when I ventured out on my own to visit and talk with some people I hadn't seen in ages.

DH is really good to me and is good in so many ways but he still does get embarrassed by the cane .

I KNOW the embarrassment, I KNOW the looks you get, I KNOW the "I just want to crawl under a rock feeling", I KNOW how much it takes from your self-esteem no matter how strong your support system.

It sounds like DH is trying to be kind and it IS hard on them too. My intellectual/logical side tells me that you should go watch him bowl. He does support you. The emotional/angry side says sleep in and wallow in the earned self-pity.  So , the answer is probably somewhere in between.

Go to the bowling but do share with him after his event how you felt tonight and what hurts your pride and how you were embarrassed at the wedding on the outside chance he doesn't understand yet(be optimistic :-)).

It's a long row still to hoe to be getting family members angry at us  but it still needs to be addressed. [Hmm Ren, this sounds like good advice, maybe you should pay attention].

So, I guess the final verdict is vent all you need to here, eat your weight in your favorite ice cream and work on getting DH to understand.

{{{{I am sending huge comforting hugs to you}}}}}
Ren