Supporting each other
I am a person who believes in supporting one another which probally a reason I come her, to give and recieve support, and one of the main reasons is I get none of that at home. You have no idea what it would mean to me for someone living here to ask What does MS feel like? Are you in pain? Is there any thing I can do to help? What does it do to you? Just the simple things like that would make me probally feel better than any med could.
I wonder this as I just put my gun away as this new Flair is showing me me just what MS can do to you, and I had to dig even further this time into my soul as to why with just a little bit more push on the trigger I would be painless, but my Grandaughter dreams as my son tells me would be over before she knew she had them.
It makes me wonder why we don't support each other here more. I see people doing great things like jenwspms doing a walk for MS, she was looking for support from us and I did not see much for her, I know things like this involve money which most of us do not have any extra, but you could join her team and not need to spend a dime. Jen also has a great FB site I see a few of us here belong to, we don't need to limit ourselves to any one site alone.
Another member kyblu has a wonder full website where you can share your story as I did, mine was kind of all over the place but it is still there for people struggling and it helps to say what has happend to you over the years and where you are at now, yet I see no support and only her and my story. Another thing is you would not have to dig through pages of comments,
I think what these guys are doing is great and a way to get things off your chest. I felt so bad and lonely as I really needed to reach out and talk to someone tonight and no one was here to talk to, I also belong to MSW and there all you get is Don't do it and a bunch of numbers and places to call, just what I want to do is talk to someone paid to man the phone. I know it is no ones fault for being on at 3/4/5/6/7 in the morning especially on the weekend but that is how things are and we all do need a life outside of these sites, but sometime these site are all I feel I have any more.
I am greatfull for members like Tickey who gave me a lead on getting funding for my meds but on the other hand feel bad that others who were using the Chronic Disease Fund did not remind us or let us know that you had to reenroll to keep benefits even though they dumped a bunch of people, and so many had to find new funding I did'nt see anyone giving places to go, or I could be wrong and no one else use the CDF for funding, either way been off meds for 3 weeks now and MS Lifelines is putting it to me hard right now and I'm so greatfull for people like Tickey.
I know everyone seems to have their favorites to talk to and help, but I almost feel shamefull for not being able to help or comment on another members post because I'm a guy and some are ladies post. I also feel bad not to comment on other posts that I know nothing about what they are talking about or have no experience, I wish we had a like button like Face Book or a symbol to let people know I have read their post and they are not being ignored.
But most of all I miss getting any support at home. It is nice of my wife to offer to feed me when I have the shakes so bad I'm tossing food all over the place, but when I took her out to eat last night she looked like she was ashamed to be sitting with me because my hand would not cooperate with what I needed them to do and food was flying around and it took two hands to be able to shovel the food into my mouth, and it looked like a 5 year old was sitting where I was, and never to be asked if things were getting worse, or if there were any meds to help or if I took my meds that may have helped.
It would have been nice to ask if I got any sleep last night as I walked in at 7:15 am with Mcdonalds when she went to bed at 1am and she knows I usually sleep 10-12 hours a day what was wrong and if she could do anything to help.
I would love to see more support at home and on sites like this as we are all in the same boat, some just sinking faster than others.
Ok I'm done ranting and raving and and just glad I belong here because of all the support I get, but I would still love to see more support for each other and probally will long for the support I desperately need at home to at least make me feel like more of a person than a paycheck for the people that live here and depend on it. If you made it this far reading this you are a great supporter of other people and should be proud of yourself. the only thing I can say is I myself am guilty of not reading enough of other peoples journals and giving them the support they need and I will try to change and be a better supporter of everyone including the ones I live with even though they don't support me
I wonder this as I just put my gun away as this new Flair is showing me me just what MS can do to you, and I had to dig even further this time into my soul as to why with just a little bit more push on the trigger I would be painless, but my Grandaughter dreams as my son tells me would be over before she knew she had them.
It makes me wonder why we don't support each other here more. I see people doing great things like jenwspms doing a walk for MS, she was looking for support from us and I did not see much for her, I know things like this involve money which most of us do not have any extra, but you could join her team and not need to spend a dime. Jen also has a great FB site I see a few of us here belong to, we don't need to limit ourselves to any one site alone.
Another member kyblu has a wonder full website where you can share your story as I did, mine was kind of all over the place but it is still there for people struggling and it helps to say what has happend to you over the years and where you are at now, yet I see no support and only her and my story. Another thing is you would not have to dig through pages of comments,
I think what these guys are doing is great and a way to get things off your chest. I felt so bad and lonely as I really needed to reach out and talk to someone tonight and no one was here to talk to, I also belong to MSW and there all you get is Don't do it and a bunch of numbers and places to call, just what I want to do is talk to someone paid to man the phone. I know it is no ones fault for being on at 3/4/5/6/7 in the morning especially on the weekend but that is how things are and we all do need a life outside of these sites, but sometime these site are all I feel I have any more.
I am greatfull for members like Tickey who gave me a lead on getting funding for my meds but on the other hand feel bad that others who were using the Chronic Disease Fund did not remind us or let us know that you had to reenroll to keep benefits even though they dumped a bunch of people, and so many had to find new funding I did'nt see anyone giving places to go, or I could be wrong and no one else use the CDF for funding, either way been off meds for 3 weeks now and MS Lifelines is putting it to me hard right now and I'm so greatfull for people like Tickey.
I know everyone seems to have their favorites to talk to and help, but I almost feel shamefull for not being able to help or comment on another members post because I'm a guy and some are ladies post. I also feel bad not to comment on other posts that I know nothing about what they are talking about or have no experience, I wish we had a like button like Face Book or a symbol to let people know I have read their post and they are not being ignored.
But most of all I miss getting any support at home. It is nice of my wife to offer to feed me when I have the shakes so bad I'm tossing food all over the place, but when I took her out to eat last night she looked like she was ashamed to be sitting with me because my hand would not cooperate with what I needed them to do and food was flying around and it took two hands to be able to shovel the food into my mouth, and it looked like a 5 year old was sitting where I was, and never to be asked if things were getting worse, or if there were any meds to help or if I took my meds that may have helped.
It would have been nice to ask if I got any sleep last night as I walked in at 7:15 am with Mcdonalds when she went to bed at 1am and she knows I usually sleep 10-12 hours a day what was wrong and if she could do anything to help.
I would love to see more support at home and on sites like this as we are all in the same boat, some just sinking faster than others.
Ok I'm done ranting and raving and and just glad I belong here because of all the support I get, but I would still love to see more support for each other and probally will long for the support I desperately need at home to at least make me feel like more of a person than a paycheck for the people that live here and depend on it. If you made it this far reading this you are a great supporter of other people and should be proud of yourself. the only thing I can say is I myself am guilty of not reading enough of other peoples journals and giving them the support they need and I will try to change and be a better supporter of everyone including the ones I live with even though they don't support me
Replies
Dave, Don\'t ever feel like you can\'t reply to the lady posts. We welcome your comments and would miss your sage advice and wisdom. After all, you are a soldier fighting in the trenches of the MonSter. Sometimes it\'s hard to reply to everyone and I\'m guilty of that myself. I do try to send you emails that I think might brighten your day. Please let me know if you are getting them.
Like you, my family has no clue what I\'m going through and if I try to explain it, I just hear about their aches and pains and it turns into a \"pissing match\" or I\'m told I need to exercise more. I shouldn\'t take a nap when I\'m tired, just push through the exhaustion and go exercise. Yep, you try that after taking muscle relaxers and Neurontin. LOL See how much energy you have.
Sometimes I feel like Sadie, my dog, is the only one here who gets it until she demands that I get up off my duff and let her in or out when all I really want to do is take a nap and escape the pain. I guess she wants to be waited on too and think my exercising will make this disease just go away.
You are not alone.
Gentle hugs, Linda
I read your journal entry and you are not alone.
This is a \"reaching out\" journal entry, one that I will try to do more for you Olebleu. No, I didn\'t realize how bad things were at home for you. It will not be difficult to befriend you because we are already friends and I look forward to our next communication. Open your heart to someone who can be there for you on DS. I will also hurry and get the phone exchange out because you are a participating member and there may be members you want to start contacting. We are all friends here, no judgement friends which are the best kind.
You have a deep, soulful heart Olebleu as can be told by this journal entry. I hope that by writing out all of these feelings, your heart is a little less heavy. Talk soon. Lynne
Dave, my heart goes out to you for your very open and raw journal entry. Sometimes, not only does this disease overwhelm us for what we are going through, but for what we know that others are going through too. I know I ebb and flow with my participation on DS, not because I don\'t want to be here or show support, but because of what may be going on with my health that keeps me from being here. I agree with you that everyone here should support each other as much as possible. Sometimes I wish there was a like button too... Because I may read someones post and want them to know I like it or agree, but don\'t really know what to say to comment. One of my worst symptoms is cognitive issues. It really messes with my ability to comment at times. Sometimes I just don\'t have the spoons. I appreciate your reminder of being more open and supportive, and for me to not worry if I can\'t think of what to say or write. I know that everyone will understand.
I hope you are feeling a little better this morning... 23 years ago today I was at my older brothers funeral because he couldn\'t handle life anymore:( Then the next day was my birthday and the day after that we buried him. To this day, I can\'t celebrate my birthday without thinking of how distraught he must have felt and it breaks my heart beyond measure. I\'m sorry you don\'t have the support at home that you need and deserve! I will keep you in my thoughts and prayers and please hang in there!! Your granddaughter needs you to be there. Grandpas are so special to us girls! And she won\'t care that your hand shakes when you eat or drink. I know how you feel with that one. I get a straw because I can\'t lift a glass without it shaking all over, and I lean way over my food so I don\'t have to hold it on the fork or spoon for very long. My almost 5 yr old granddaughter lifts my hand sometimes and asks \"Grandma, are you shaky today? I\'m sorry you are, do you want me to hold your hand so it won\'t shake?\" These little people are the most unconditional loving supporters! You have a purpose in being a grandpa!
Take care please...
Your friend,
Tracy
Hey Dave!!! So so very sorry to hear that you feel so bad! I was worried that you might be feeling this way! That you might be suffering on your own there & going through another sucidal patch!?
Your right! Friends & family don\'t understand!!! Their not sensitive enough to how it feels to have a disease like this! And, I think neither were any of us until we got it ourselves!? I always felt bad for others who were suffering in any copassity, but never really knew for JUST HOW MUCH THEY SUFFERED IN SILENCE UNTIL NOW! And, I think that it will take us doing something for US to make a difference! Because NOBODY BUT US GET IT!!! So maybe I can find other MS\'ers here & find a way to help them & be there for them! It would get me out of my own shit & make me feel better about myself!!! :) Always feels great when you can help others!
AND, I PERSONALLY WANT TO SAY THAT I AM VERY SORRY FOR NOT BEING THERE FOR YOU ENOUGH!!! We all do need to support each other & we need to support you more because you are there for all of us!!!
And, you don\'t make false promises! You don\'t say that you\'ll be there or say that you\'ll call or whatever & then not do it, like some!!! Your a good good man Dave!!! And, I hope that you can hang in there!!! Because you mean a LOT to us, & you mean a LOT to me, for sure! But I do totally understand that it gets sooo hard to hang on & hang in!
I had recently gone through more than I could bare & I had given up & was going to check out too!!! But suddenly, things got better!? I\'m not saying it works that way all the time or that they get any better in the long run!? I don\'t know!? For me, it took getting my SSI check & being able to make ends meet much better! And, my best friend saving my van! There was only a day between losing the van & getting my check! They were taking if it wasn\'t paid on & renewed by the 31st! And, my money didn\'t come in until the 1st! But that was not even 24 hrs! I\'m just trying to say, I guess, that a few hrs or a few days can make all the difference sometimes!?
When your in the hell & going through it & nobody is there to help you or make you better then death is the only option!!! But when that moment of help comes it can make all the difference in the world!!!
I won\'t tell you to stay here for me or for anybody else! Because ONLY YOU know how much your suffering or how much you can handle! AND, NOBODY ELSE HAS THE RIGHT TO MAKE THAT DECISION FOR YOU!!! But should you ever chose to go, to be out of pain once & for all & to never suffer again, I FOR ONE WOULD GREATLY MISS YOU DAVE!!! IT WOULD BE A SAD SAD DAY FOR ME & MANY OTHERS HERE, WERE YOU NOT AROUND ANYMORE!!! Though we would all truly understand!!! But that wouldn\'t make us miss you any less or make us grieve any less!!!
WE COULD ALL LEARN A LOT FROM YOU!!! ESP.... ME!!! Now that I am doing better--mentally-not physically!--maybe I can help others who are not!?
My MS stuff has been worse & giving me a run for my money, & my other tooth is killing me & ready to be pulled now, & I have a bad resp..... infection from hell again & almost pneumonia & it\'s about to wipe me out! Doc said that pneumonia is the last thing that any MS person needs that it\'s very dangerous & life threatening when you get it with MS! And, that I don\'t want to go there! And, that he is worried!!! And, he said that when you have the heat issue that it is important not to get hot in the summer because it can make an MS person have a really bad heat stroke! He was worried about that with me also & said that he really wants me to be careful & try to stay cool & to not be out in the heat, so no push mowing again this summer!!! :)
But mentally I am better & am ready to support others & give it hell!!! So I\'m here for you Dave! PM me & I will give my number so that you can call me when you need to talk! You call!? I\'ll listen!!! Any time day or night! Don\'t sleep half the time anyway!!! Esp... with this infection & bad tooth! I might as well listen as toss & turn!!! That\'s as good a way to spend my or night as any!!! :)
Love ya Dave!!!! Hang in there--IF YOU CAN!? AND, THANK YOU FOR THIS JOURNAL!!! WE ALL NEEDED TO HEAR THAT & TO KNOW THAT!!!
I am so sorry that you are having such a hard time. Hang in there. Things can only go up for you! xoxoox
Thank all of you for your support, I\'m the type to always hold things in till it gets out of control, In the past I would never have been to write what is going on in my life and it does help to let it all out sometimes. It seems that I\'ve always had that black cloud over my head, people at work used to tell me not to get to close to them as they would\'nt want that cloud I have over their heads ever, pretty bad when other people can see that you have that. One day things will change. It does make me happy when I can brighten someones day or to be able to help someone, my ex used to always complain that I helped to many people and to let them take care of their problems but I\'ve never been like that as what comes around goes around. Once again thanks for all the support
Dave
It\'s always nice to help nice people with a good heart. It makes us feel better too. So don\'t ever deprive your friends here of the good feeling of helping one another. You know what that feels like. It\'s one of the things this disease can\'t take away from us. We can only do that to ourselves.
Gentle hugs, Linda
PS. Hey Dave! When do we get to see updated photos of your grandbaby?
I tried the other night and it would\'nt let me upload any pic\'s of her, I\'ll try again
Dave, I just read your journal entry. You are never alone. I understand exactly. My family never ask me anything. They assume that everything is fine because I was able to get out of bed. They expect me to do everything. I do not get a whole lot of support except from my sixteen year old daughter who I love deeply. Thanks for taking the time to read my journal and making a comment. I appreciate it.
Dave,
regarding your wish for a LIKE button like on fb, there is place to RATE THIS ENTRY just below journal entries..i just rated your inspirational. thanks and much love
HUGS Dave....
I honestly had missed this post for some reason when we just talked, so--- as soon as we hung up, I went to see what I\'d missed and sure enough there was this journal entry. I don\'t know why DS didn\'t notify me....or maybe they did and I spaced it... Anyway, I\'m sorry, and I have read it now. I agree with the above comment that it is \"Inspirational.\" You are one of the most supportive people (for me) on DS, and you have helped me so much. I only hope that I can return the support enough....
Yeah...home life....Ugh...I\'m so so sorry... I know you said you read my last journal entry, so you are def. not alone in that struggle. We on DS (I) am here for you whenever you need us though.
HUGS!
KatdT