When is it time to give up?

[Myoak]

Kittysmith,

Think about this, how many people on this site would actually give you a hug and express the tendermost (is that a word?) concern for you? Dozens, at least, probably more.

No one fits here. We all hate this disease. People here understand what you are facing. You are speaking for many who can't. And they find comfort in realizing your post could be their expression. They understand perfectly and like no other.

We all feel helpless at times. Just like you, we say our prayers and move on. Not because we want to; we just do it, like slugging through mud. Often there is a better day ahead. One with joy, help, love; one where a small kindness we have spoken or little something we have done makes a remarkable difference in someone's life.

You have already touched hearts here, kittysmith. You have already drawn out that which always needs renewal, tenderness and concern.

You are so honest and refreshing. Thank you for being you and thank you for posting here where we love you already.

[Temagami]

Kitty,
You might like Allie Brosh´s blog- she writes about depression, but uses lots of simplistic artwork and a wicked sense of dark humor. She compiled her blog over time to write a book that is readable in one sitting. Or... you can go and read the blog archives. She describes the place of depression where no one else seems to get it. No one here is expecting you to "get over it." We are trying to pry open the door to let in a sliver of light so that you have somewhere to head towards. If you were sinking in quick sand, we´d be reaching out for you.

I was struck by your comment about fighting the world- from my perspective, it´s not a fight.

Some lesions can cause uncontrollable laughter and/or tears. Does your neuro know that you are experiencing that symptom? There are interventions that help.

I´m sure that there are more facets to your identity than wife, mom and worker.

Cyber hug,
Temagami

[kittysmith]

Nes, please stop.

kittysmith,

i really wish you wouldn't get so defensive. i'm hardly giving up on you. i have been nearly suicidal myself at times. i opened up my situation, things i've never shared before here, because i do care. i know you weren't ready to hear what i had to say, i can see that now, but it worked for me, so i was simply offering a message of hope.

i know i don't have ms. i am a caregiver. i post here b/c i care about my partner and others in the ms community. i post in the caregiver forum and get lots of feedback from msers, but i don't filter those out and i don't call people out on being msers and not caregivers...i just see it as added perspectives.

i was never trying to say i understood your particular situation. nobody knows what it is like to be someone else. i wish you wouldn't give up on an entire community b/c you didn't like my story. these are support forums, so it's natural to share situations in hopes that some grain of what a person has shared can help another. just ignore me, i guess. you have gotten lots of feedback here, so others have probably offered more what you were hoping to receive.

If you don't want to post on this thread, then just don't post. You didn't have to go out of your way to tell me that you weren't going to post on my threads anymore.

I guess my apology meant nothing. I did apologize. Please feel free to ignore me. I'm sure there are lots of people on this site who wouldn't give up on me.

Again, I am so sorry that I offended you. Again, that was not my intention. Again, I am in a very dark place and am finding it hard to hear advice from anyone.

I think this whole thread needs to end. It seem all I do is make people angry.

Thank you, Nes, for being a caregiver. I cannot imagine what strength it must take to be one. Good thing you didn't get stuck with me

I wish you all the best in your life. Hopefully you will read this last post before you move on from me and my problems.

[Kimba22]

Hi Kitty,

I'm so sorry you are lonely. That's why this site even came into existence. The founder, Kathleen Wilson, wanted to end the loneliness and isolation so many of us with MS often feel. She felt it, I've felt it, and after reading other posts, so do so many others here. This is not the same as a face to face contact, but all many of us have. We do our best to be there to offer kind words of support.

You have a lot on your plate you are trying to deal with. Sometimes, just having a safe place to vent is what we need to find the strength to go on. I'm glad you reached out to us and hope you will always feel safe here. No one wants to (or ever should) make you too feel worse. I'm sorry that happened, and someone's posts were upsetting to you.

I'm sorry no one has any answers you think will help you, and especially that you were offended. That's not why we are here. People care, and to show that, try to share what has helped them. Mostly, what I read throughout this site are very kind and thoughtful words written by members trying to help someone the best someone can. I can't answer for what was said by the poster who comments upset you, but I will say EVERYONE cares, some in just their "own" way.

It can also be hard to really "read" what someone is saying just by reading the hard print. Sometimes, we "hear" the wrong intonation. And what we may "hear" ourselves while writing doesn't always come across the same way. Sometimes, people express themselves in a way they normally don't because they themselves are having a bad day. And, sometimes when we are struggling and at our worst, even the most sincere of posts, don't necessarily make us feel better. I think many of us can answer "yes" to a sentence or two (or more).

All that aside, I'm glad you opened up and reached out to us. That's really the only way any of us can understand the heart ache you are feeling. After reading your posts, I wish I could reach through the screen and give you a hug. I'm sorry I don't have any wise words that will help fix things for you.. No one does. A kind word, often from someone here, has helped me to get through some difficult times. Please know so many of us care.

Even if someone around us "watches" us or "hears" the things we may say, they can't understand the things we go through. But I really do commend those who try. They are a rare breed. All too many people head the other direction when they can't "fix" us. Especially if it's a long term problem. Not nice, not fair, but they are just too uncomfortable to be around us. Most everyone here who has MS has seen that in some way. I definitely have!

I don't know why you have been the one to support your family for all these years. You said he had other health problems. I hope his education will now enable him to find work so he can support your family. Sounds like you are so in need of some time for yourself. You have been so busy for so long, it's really no wonder you feel overwhelmed by life right now.

I don't know how you can continue to carry the loads you do if you can't get help for yourself. I' m not sure why you mentioned being in the psychiatric ward of a hospital would be truly be the end of you. Instead, maybe it would be the beginning of a more effective plan? Sometimes, that setting is the best way to help someone in the quickest way possible. I'm not saying that to upset you, only because I've been in that dark place before, too.

There are things you said that resonated with me. I struggle to walk and now spend most of my time in a wheelchair. I don't drive anymore. I can still see, but get it after I stopped several years ago. It was after my reaction time from my mind to my foot caused me to end up on a neighbor's lawn. My kids were with me.

No one was hurt, but scared me to think I could've caused serious injury to them or another innocent by stander. I hate that I have to rely on others to get where I need to go or help with transportation for my kids. (At least my son can now drive.) No one can possibly understands how that feels until it happens to them. It's really hard when you have to rely on someone else to help get you anywhere.

My husband used to get panic attacks, and a few in his family suffer from them. His sister suffers from them a lot. She's normally very good natured, happy, and outgoing. When they happen, she becomes withdrawn and won't talk to anyone. She's been on different medications, but none of them have helped.

I never understood them, until I had one due to a reaction from a drug. All I wanted to do was run somewhere, anywhere (can't run, but sure you understand the feeling). It makes no rationale sense to those who've never had it happen to them before. It was a scary feeling. I can finally understand a bit more now.

I'm sorry you will be alone to care for your son in December. I hope knowing how much he/ she needs you gives you the strength to care for your child. My heart goes out to you that your child has autism. That's a huge responsibility even for someone who doesn't have health issues.

And no one can really understand that unless they have a child who has it. I won't say I understand all you are going through with your child. Far, far from it. But my son was diagnosed just before his 5th birthday with the highest functioning spectrum of autism, Asperger's.

I remember all too clearly the difficulties he had with social settings, especially with his peers. It broke my heart, especially when he would say that he had no friends. I can also remember that feeling of being ostracized by other parents. He was in a regular classroom. I was the one who had to confront a couple of teachers, and get other staff involved, who were just mean and didn't care to "get" it. Even family members didn't get it. We left abruptly from family functions more than once when he was young. It was all very upsetting.

When he turned 9, I was diagnosed with MS. It has been aggressive. My daughter was still a baby. It was a rough year. My husband was also finishing his master's degree. He was working full time (something I am very grateful for). When he was around, he was either doing schoolwork or too tired to really help out. I was sick with vertigo most of the time, was in pain from uncontrolled spasticity, but still had to try to function. Hard to forget.

I can't even imagine going through all that when my son was younger. I already had MS, but no one recognized it until it until it finally stopped me in my tracks. My son had just started 4th grade. He had a wicked teacher. She was a first year teacher, I had to confront her several times. Thank God she "disappeared" from the school district the following year, but didn't help us (and obviously, other students and parents). But, now I know his case of autism was different and he has turned out to be one of the few lucky ones.

It's only because of where he fell on the autism scale. It didn't happen overnight, and something I never knew was possible, but he seems to have outgrown it. He is a young adult now, working part-time and pursuing a college education. I never would have believed that not all that long ago.

I believe he is where he is today because of the power or prayer. I've still had all kinds of challenges, though. But I'm grateful he will be fine. I'm very sorry to learn your faith is faltering. It happens a lot whenever someone is faced with a serious illness or has difficulties. But, that doesn't mean God doesn't still care for you. But, as you've said, you've heard it all before ... (I also noticed where you live, the "Bible belt."). I just hope one day you'll be able to see He was at work somewhere in your life.

One of my friends, has an adult child with Asperger's who isn't doing so well. He'll always be dependent on someone for his care. I hope that won't be the case for your child. They've exhausted so many of their resources trying to help him. His mom was a special ed teacher and they've also been to doctor's across the US. She has been one of the most positive, upbeat, encouraging people I know. But we all have a limit. She found hers.

She was recently in an accident and broke her back and cracked her skull in a couple of places. On top of that, she had complications and was in the hospital for close to 3 months. She is in a body cast from her her neck down to her buttocks. She can still walk and didn't suffer any permanent brain damage. She knows she's lucky. Her body will heal. Her doctor's have told her so. She's surrounded by the love of friends and family. But, she's still fallen into a deep depression.

I know what that darkness is like, because I have been very depressed. The interferons I used to be on only made it worse. Once I voluntarily went to a psych ward. It wasn't the end of me. I won't tell you it wasn't an uncomfortable experience, but don't know if I ever would have been put on the path to overcome it any other way. There is hope out of the abyss of darkness, I hope you find someone who can help you out. Please keep reaching for that help, OK? What it really shows is how incredibly strong you are.

I used to be very crafty, too. I didn't try to make jewelry until after I was diagnosed. It was too hard, but I know I would've loved it. I used to play the piano. I was very good. I loved that, too. Both of those things were very relaxing for me. I suppose you don't really understand that unless you liked to do it, too. I really miss those things. I try simple things, like making easy, pre fab card crafts kits, but it is still hard. Now my left hand refuses to cooperate. I used to be able to focus and concentrate for hours at a time until I tackled something. Can't do that anymore. Frustrating. There's a whole lot of "I used to's" for me and many others here. We "get" that unlike so many others.

But, I also miss the person I once was. I hate it that my children don't remember me that way. It's hard to accept I'm not capable of doing what I once could. Sometimes, I can't remember simple multiplication facts. I forget words. That's sad, especially since I was once a math and science teacher.

I know the "me" I once was is still there somewhere. Once in a great while, I catch glimpses of it. But, I have become a shadow of the person I once was. That's hard to think about, so I try even harder not to, and do my best to focus what I need to do right now. I have to. Otherwise, I could end up back in that very dark place again.

I have been physically very sick several times. I have spent weeks in intensive care units. Not only thanks to MS, but the medications used to treat it. I have spent months at a time in the hospital or sub-acute rehab facilities. Medical professionals I don't remember ever meeting recognize me. I have had to hire caregivers to get me in or out of bed, and just to help me to the bathroom or get dressed.

It all takes a toll not just physically, but mentally and financially as well. It takes a toll on my family. It never ends, for each step forward there's always something to set me back. Now, something is up with one of my kidneys. There are times I also just don't know if I can still go on.

I came very close to refusing a treatment once that would would save my life. Doctors tried to persuade me. Friends and family also chimed in. It wasn't until I saw the sadness of my children that I consented to have treatment. As much as this disease has taken, they still need me. I'll be honest, there have been times I wished I'd said no. I hate this disease and all it's done to me and my family.

Sorry for the long post. I hope it makes some sense. I only told you what I did because I "get" at least a few things you are going through, but obviously not all of them.

Please don't give up on us. We will always be here for you. I wish you luck to overcome the obstacles that are in your life. You'll be in my thoughts (and my prayers). Please do whatever you possibly can to take care of yourself.

We really do care about you. I hope you can see that by everyone who replied to your post.

[Goldfinch]

NEVER, OP. NEVER.

[Thinkimjob]

Not yet. Maybe never yet.
Kittysmith, I've read all your posts from a long time back. I get it you don't want advice or anything, just sympathy and understanding.
People, good people, have a natural urge to try to help. No one likes to think of someone in so much psychological pain without trying to do something, however inadequate, to try to help you feel better.

[palmtree]

Kimba22,

Your post was beautifully written and very moving. I hope Kitty logged on to read it. I agree with everything you said. Except I would like to comment on one part of it.

Going to a psych ward could lead to answers but I have a word of caution. If you go, tell them you feel anxious and depressed and you are struggling with your life with MS. As long as you don't mention the S word and don't say you want to give up or anything along those lines, you will be safe. When you are seeking help it's a shame you can't be straightforward and honest but we have some laws in this country that prevent people from getting the help they need.

I actually had an experience the year after my dx. I was feeling so anxious I was jumping out of my skin. I went to the university emergency room where I knew they had a good psych hospital. I just told them everything i was having a panic attack and everything I was dealing with and I cried and told them how sad I was that my MS was causing pain for my family.

They told me they would admit me for a couple of days if I wanted to go. It was purely voluntary. Mention the S word and you will never get out.

They wheeled me upstairs to this luxurious palace. I wish my apartment was that nice. An awesome team of psychiatrists came into my room. They gave me a chance to tell them everything that was hurting inside me. After they left I felt such a release. I cried all night and it felt so good.

When they discharged me they gave me a phone number to call for a day program, also strictly voluntary. I went for one day and it, too, was fantastic. It couldn't continue it because of my asthma but I wish I could have.

In short, checking yourself in can lead to good things but proceed with caution.

[kittysmith]

I really have no right to complain.

Thank you everyone for your heartfelt posts. Thank you for taking the time to share your stories. Many of you have it much worse than I do.

I only came to vent. But I see now that I really have no right to complain.

So my posts make me seem sad and defensive? Maybe that is b/c. I come here when I am at my lowest.

I never said I wasn't looking for suggestions. I appreciate them. I am happy that many of you have found ways to cope. I still feel like I don't belong here or anywhere else.

Again. Than you all for your suggestions and offers of hope. I have read every post. I feel the kindness and love that many if you have offered.

I wish you all the best in your journey with this disease. Maybe I will post again sometime, but I don't think I will be sharing my concerns or true feelings ever again.
I do not want to be seen as the miserable person that my posts imply. I think it is best to only ask specific MS questions.

I have learned from my family, my few friends, and this forum that no one wants to hear me complain or hear how bad things actually are.

Perhaps I will find happiness again one day. But it is unfair for me to burden anyone else with my problems.

[22cyclist]

kittysmith: I have been there. I had a plan. I had to reach out for help. I hope you will do the same to an outside source if it gets that bad. We are here for you, but sometimes you need face to face help. You have plenty to complain about...you have MS. Like my neurologist said to me when I asked about depression, "Lisa you have MS" I almost laughed out loud because I knew that, but then she said "It changes your brain chemistry".

You are not really complaining, you are just stating how you feel...that is a good thing.

Take care
Lisa

[Kimba22]

Hi Kitty,

Please remember you DO belong here. You were so open and honest, and shared with us what so many of us are feeling. I, for one, found that that refreshing. Many of us are afraid to open up like you had the courage to do. I know I opened up more than I ever have here. That was only because of you.

Thanks for giving me more courage to share what I did. There's always more we can share, and maybe I'll share some of that in post you might see here in the future one day. There are people who might not say anything now who will benefit from your post, plus those who responded.

Don't ever think you are worse or better off than any of us. You fit here just as much as anyone else. You will ALWAYS have the right to complain here, or maybe a better wording is "express yourself", here. I would love to see a drawing or painting you've done. There is also a place for that here, too, in our Creative Center.

You have your own struggles to deal with, and they sound very valid and overwhelming to me! We are here to support each other, It should never, ever matter how much better or worse someone may perceive themselves.

Believe me, I have also learned the hard way that no one in my physical presence wants to hear me complain. Not that I don't care about them, but it can be hard when some decide it's OK to complain to me and I'm their sounding board. (Some more than others.)

So many times I wish I had a gigantic sign that read , "Really? Do you realize who you are complaining to about THAT?". Once in a great while I'll comment, but since it usually doesn't get anywhere, I have learned to bite my tongue. (Mostly) Everyone feels a need to complain. But, it's even harder to listen to when in comparison, it's really so trivial. Believe me, what you have going on in your life doesn't sound trivial!

For me, it's my mental therapy to come here. It makes me feel better, knowing by reading other's posts that I'm not alone. It also helps if I think maybe I can help someone else. I found that really helps ME. I can only hope maybe I helped someone else along the way. Maybe not, but it's what I hope I do. I appreciate what Lisa said, too. We're not usually told MS affects our brain chemistry.

I don't vent much here. Maybe I should. I don't know. Turns out instead I always read something that helps me feel a bit better. But, I hate the struggles I've had and know there will undoubtedly be new ones. Showing a good "face" has become my coping mechanism.

Please keep posting. We do care about you. I just saw you started another thread, and I was glad to see that. You can always post about anything. Not just specific questions about MS. Please don't feel you have to keep apologizing all the time, either. Sometimes we all need a reminder that maybe we came off wrong or pushed too hard.

Like Myoak said, because of your candor, we are finding it almost impossible not to love you, and that's only because you are being you. Thank you for that.

Not everyone touches me as much as you have, and that's because you opened up to us. (I hope that's not to say I still don't find everyone else here still doesn't touch me in some way.) Unless I miss it, I will always try to respond.

I hope it's always in a way that shows I care. I would never want to deliberately upset you, or anyone else here, for that matter. But, I'm not perfect and know I might. Sometimes we share information that doesn't necessarily help at that moment. But, then again, maybe it will, later.

Everyone's journey is different in life. We all somehow all got stuck with MS in our lives. So many have been dealt something else, too. It's not fair. Somehow, most of us find a way to go on. Some don't. There was a time I almost couldn't. I was so very sad. Sometimes, I still am. I know I was lucky to get the right help when I did. Not everyone does, and that is the most heartbreaking thing of all.

Please, please remember how welcome you will ALWAYS be here. There's no way you could really ever know this, but you have already helped others to realize they aren't alone. I hope I see many more of your posts.

I just also hope you realize you made some new cyber friends, and one of them is me.

(((Hugs)))

[Diamond57]

Kimba

I was so touched by your posts it made me cry. You are so wonderful, kind and courteous and most of all generous with your heart.

Bless you.....
Diamond57

[Cat Mom]

Kitty, I apologize if I sound mean... maybe you should stop worrying about people "giving up on you" and start concentrating on not giving up on yourself!!!

C'mon, you're so worth the effort!
Jen

[palmtree]

Kittysmith,

It sounds like you are happy now. You came to vent. Now you are past it.

I have to tell you I didn't enjoy your response to my last post. I wrote about a moment in time. That is not who I am. And I don't have it worse than you. I don't want your pity.

[iamziggy]

I just want to say to Kittysmith. MS is a ***. I have it as well and here is a "hug" for you. I'm sorry for all you are going through.

[kittysmith]

Wow, Palmstree. Thanks a lot.

Kittysmith,

It sounds like you are happy now. You came to vent. Now you are past it.

I have to tell you I didn't enjoy your response to my last post. I wrote about a moment in time. That is not who I am. And I don't have it worse than you. I don't want your pity.

How mean. I am not "happy now". Why would you say such things when I am at my worst? I appoligize if I hurt your feelings. I'm not even sure who you are or what I said.

You see me struggling and wondering if it is time to give up and so you find my thread and decide to dump on me? That is exactly what I am talking about. People give up on you when you are at your worst.

I see, now, that I am really unwelcome here. Thank you to those who tried to help me feel better, but I cannot take being singled out and put down.

And, believe me, Palmtree, I do pitty you, not for your posts, but for feeling like you had to go out of your way to hurt me. Why?

I am thankful this place is here for those who have MS and their caregivers. This thread, which I wrote at my deepest darkest time has hurt me more than anyone else has. Even my family and friends don't go out of their way to hurt me like this.

Hope the best for all of you. As I have asked previously, can we please just end this thread? I don't want to feel any worse about myself than I already do.

From now on, I will suffer in silence and hopefully, I can talk myself out of leaving this world. I do not feel comfortable sharing my feelings on this site.