When is it time to give up?

[nes]

kittysmith,

this might sound harsh, and i certainly don't want to upset/offend you, but no doctor or therapist is going to be able to help you until you are willing to accept the changes in your life and open up to finding peace. i struggled with bad anxiety and just wanted a clinician to wave a wand and make everything better, but i had to be willing to accept my issues and work towards change. in fact, i didn't even go into intensive therapy until i was sure i was going to commit and not have a rotten attitude about it. (i eluded to it before - severe contamination ocd with panic attacks...i was formally tested and topped the scale of ocd intensity.)

a lot of crap has happened to me too. a lot has happened to my partner. two years ago she went from the hospital to a nursing home b/c she wasn't safe in our home. she couldn't even use the bathroom without 2 or 3 aids. she was in adult diapers that were so bulky they stuck out of her pants. she was physically disabled, on ssdi, and stuck in a nursing home with stroke and dementia patients. she was only 34 at the time. she had student loans from schooling for a career she never got to cash in on.

could we have sat there being bitter? yes. family had all kinds of advice and were annoying us. my younger brother would scream at me when he saw me b/c he couldn't handle what was happening in my life. the two of us were broke and just about everything seemed to be going wrong. what did we do? we tried our best to make the best of it. i mean, would i have liked a magic genie to show up and change everything instantly? of course. but this was our life.

we decorated her drab depressing nursing home room. we spiced up her assistive devices. i brought her tons of snacks so she could skip the strained prunes and cream of wheat type meals they served her.

and then i got busy looking for anything that might improve her quality of life. that's when we went to northwestern and she had stem cell therapy done (with chemo...called hsct). she actually saw improvement. and got better. you might be a good candidate if you are 47, mobile, and have had a relapse recently. check my profile.

your situation sounds like it is very tough. i'm not trying to make any of this sound easy or fun. but, if you are committed to change, your life might take a new direction that brings you happiness. no offense, but based on reading your posts, it sounds like right now, you want to be bitter and angry....i was this way for a time when everything was going wrong and just being royally pissed made me feel good. but, it has the potential to burn a person out over time. and makes the divide deeper. you see others going on with their lives and it just drives the anger further...and the anger only hurts you in the end.

and one last thought, i am not religious...i am spiritual. i joined a unitarian universalist congregation and the support was phenomenal. i made great compassionate friends. i joined groups not designed for support, but ended up meeting some great people. i don't know what your child's autism is like. but maybe he/she could even go with you. i know my congregation included child-care for some events..perhaps a possibility.

[Lianne]

Thanks, Nes, for your inspiring and insightful posts. It's good to be reminded that the responsibility for change lies within. It's so hard when you're in a "pit" and you feel like you can't get out, but it can be done. And I do realize that anti-depressants are a must for some, but they obviously are not the answer for everyone.

[kittysmith]

I do take offense.

You can't tell someone they are going to be happy and then it just magically happens. I am extremely well aware of my situation and having anyone compare theirs to mine is unfair. I think we are all well aware that others have it worse than we do. But it's all relative. It's how I feel. When you are down, you are down. I have struggled all my life. My husband is a minister, so you can save the religious/spiritual stuff. Prayer? Don't believe in it anymore.

Thank you all again for your comments. Even the ones that make me angry. I appreciate you taking the time to listen and care. It's just not what I needed to hear right now.

I realize that I have shared too much and will make sure to never make that mistake again.

[Fed Up]

You can't tell someone they are going to be happy and then it just magically happens. I am extremely well aware of my situation and having anyone compare theirs to mine is unfair. I think we are all well aware that others have it worse than we do. But it's all relative. It's how I feel. When you are down, you are down. I have struggled all my life. My husband is a minister, so you can save the religious/spiritual stuff. Prayer? Don't believe in it anymore.

Thank you all again for your comments. Even the ones that make me angry. I appreciate you taking the time to listen and care. It's just not what I needed to hear right now.

I realize that I have shared too much and will make sure to never make that mistake again.

Hi Kitty
Please don't hold it against MS'ers trying to console you; even some MS'rs really don't understand the isolation and loneliness you are experiencing. Just exercise, that'll cure what ails your mind or, read a book..surely you can't concentrate on watching a movie with eagerness, in your hours of despair and loneliness

reaching out to others that you feel should be empathetic; well, I am certainly empathizing with you. We all have our daz and I surely have mine. I really don't want to hear of 'what I should be doing' and just want to rant and have some simple kindness of understanding of a compromised life with disease.

I have no advice for you at all, except, I definitely understand how you feel. When I am like you are, I come here to read of those feeling it worse than me and it doesn't make me feel any better but, it definitely pulls on my heart strings of how some manage to keep 'pulling out' of the hour of dreaded loneliness and despair.

There should be a forum for 'playing' to get our minds off this disease. So, I do my playing of mindless games on other forums; meeting and getting to know others in an area of personal interest and 'common' forums of a hobby or something I enjoy and the support of people without disease, that really try to understand and be supportive.

Recently, I've spent plenty of the past year helping my neighbor and good friend with her dying of lung cancer and having a place to post it and support of others, a private message of a on line 'friend' that said, "It's time you started enjoying your friends that are alive, again." Can't tell you how much that meant to me.

Simple acts of kindness really tug at the heart strings. When we are down we want to feel needed and useful...I hope you feel that as, I was having a really low day today and normally, I try not to read posts that might be sad but, today kitty, you have company and tomorrow you won't, because I've had my pity party for myself, long enough.

I have a little dog she'll be 6 in April and she still puts a smile on my face and a reason to try to live long enough to see she has a special life for bringing so much joy, to mine!

No words of encouragement either..sometimes we need to be where we are, to get where we are going. Good luck and karma are sent your way. fed

[Temagami]

Kitty,

Here´s something for a Nashville gal- belt out your blues- whatever phrase is rattling around in your mind- let it out and try to make is as bluesy as possible. I went into the woods today and riffed off of: Maybe I´ve got one more cry inside before I die. And if I do, I´ll cry a tear for you. Already cried ya a river when I was blue.
It scared several deer out of hiding and they went flying into the brush.
If you get a lick you like- you could treat yourself to a recording in one of the Nashville DIY studios. We could probably create a MS blues CD by polling this group.

You sound like you are tired of being tired and that´s understandable. Having a special needs child would be challenging for you in the best of health. What was the most recent thing you did to show kindness to yourself? I splurged on a jar of cashew butter and dare to double dip. It is the little things in life that are accessible and bring joy. I´ve been reading Derek Lin´s Daily Joy of Tao- short essay per day right before bed and they leave me pondering at such a deeper level.

In my lowest of lows I realized I needed my own cheerleader- so, I went to bed and woke up telling myself, "I am good, I am kind, I am important." Told myself that repeatedly for weeks on end. Nowadays I just need a booster every so often.

I can also attest to the healing power of watching every stand up comedy show Netflix has to offer.

MS does cause depression and it can be addressed. Oprah had a show once on suicide and not a single survivor regretted being saved. Something to think about.

Switching to part time work sounds like a good plan. Time for you to claim some well earned time for yourself.

[nes]

kittysmith,

i'm sorry if i offended. i was only trying to help. i read a bunch of your posts before writing to you and was coming from a place of honest concern and empathy. your posts over the years make it seem as if you've been in this boat for a while.

i was not in any way trying to compare situations with you. i would never do that. i was simply share my journey. i also wasn't trying to tell you what to do regarding any spiritual/religious...just that it helped me.

you sound like you are absolutely miserable, so it's natural for people to suggest ideas. if you just want to rant and have people agree with you than i'm sorry. i didn't get that from your original post. i won't bother you any more with my words. (to be honest you kind of hurt my feelings since i was worrying about you and tracking this thread.) best to you.

[SEAMSGUY]

Hi Kitty, I just wanted to join the others to say hello and to let you know that like the others, I care about you too.

You have been given way more than your share of challenges in this life and that's not fair.

Your story is inspirational to me and I'm sure to many to many others here as well. You are doing the best you can and I greatly admire you for that.

Please hang in there and keep us posted on how you're doing.

S.

[kittysmith]

Now I know It's time to give up.

Well, nes, I guess there are just hurt feelings all around. If you read my last message, I thanked everyone, even those that made me angry for trying to help. You were one of the people I thanked. I guess you are another person who has given up on me. Thank you for giving up on me. I really needed to hear that. And, from someone who doesn't have MS? You have every right to post on this forum. I am not implying that you don't. But you cannot possibly understand the toll it takes on the mind. Imagine being unable to control your emotions and having people give up on you left and right.

I don't think I will post on this forum anymore. I just seem to end up saying the wrong thing anyway. Now fellow posters are giving up on me too? I just can't take it anymore. I really can't.

I wish you all the best. Thank you all for your kind words and understanding. I just don't fit in here. I don't belong anywhere.

[pennstater]

Hi Kitty,

I can't imagine the dark place you are in. I was only in it for a week once and the anxiety attacks were something I will never forget. I was fortunate, as the medicine worked and the root cause was easily identifiable, making therapy work for me.

I do feel for you, as I can't imagine dealing with these feelings as long as you have. It is obvious from your posts the pain you are in, and the isolation you feel. It seems that you feel everyone has given up on you, and also mutually, that you have given up on everyone. That is a dangerous and painful place to be.

People here are concerned about you and none of us have the answers. The most important thing is that your doctors and therapists do know the place you are on a daily basis. It sound like they do. At the risk of upsetting you, it does seem like you really need a break and time to focus on you, to allow you to deal with your feelings and work on moving in a direction that helps reduce the pain. That is hard to do when working and taking care of your son. You may need some time away from your family. Even that, there are no guarantees.

Again, my intent was not to upset you. I have tremendous respect for you battling through each day. My only wish for you is that you can get to a place that allows you to start seeing some joy in life and that with time, you can feel free of some pain

[nes]

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.

[kittysmith]

I truly am sorry.

I am sorry if I have hurt anyone's feelings here. It is not my intention. I am just in a very, very dark place and I feel more alone every day. It seems like any advice I hear, I sort of get a "been there done that" attitude. I am searching for answers and seem to be hopelessly lost. In other. I am in the deepest hole and attempting to crawl out of it seems impossible.

So, I am sorry if my responses sound harsh. I am feeling mad at the world and don't have enough energy to fight back.

Again, so sorry. It just gets the best of me sometimes. Love and good wishes too you all.

[dyin_myelin]

Kitty, please contact me. It's important. I am briefly putting my email in my profile.

[nes]

i just wanted to add that i am leaving this discussion thread now. not because i don't care or have given up, but b/c it does not seem productive to continue. i have shared my experience, take it or leave it.

at the risk of upsetting you further, you might consider your initial post about feeling isolated and having no friends. the only post you commented on specifically it seems was mine, because it made you angry. you seem to have only pin-pointed all the reasons i upset you. this doesn't seem like a useful way to open up to new friendships. the only reason i feel it useful to back out now is b/c my words only seem to be making things worse. i hope you can find what you are looking for. take care.

[palmtree]

Hi Kittysmith,

Many times in my life, when I have seen only darkness, the people I tell want to fix it. The solutions they give me seem so trivial.

We aren't going to give up on you. At least I'm not. You are ok just the way you are. Your feelings are ok. But as we all know, we have to be careful not to overburden those we love with the weight of our despair even of it means faking it sometimes.


I hope something will come into your path to lighten your load.,

[Lianne]

Many posters have said that they care about you, so please don't overlook them, and as many are going through similar pain I would say you fit in quite well.