Tired: I'm lala I have MS and I'm tired... - My MSAA Community

My MSAA Community

8,915 members20,600 posts

Tired

Lala88 profile image
26 Replies

I'm lala I have MS and I'm tired had it for 28 years I went by myself I feel like I'm confined to Li apartment I'm tired of falling I'm just fed up

Don't have a happy story cuz I'm done fighting with this disease I felt helpless

Sorry but there's nothing happy about this

Written by
Lala88 profile image
Lala88
To view profiles and participate in discussions please or .
26 Replies
Jesmcd2 profile image
Jesmcd2CommunityAmbassador

Hi Lala88 I don't think we have had the pleasure? I'm Jes. Sorry things are sounding so rough for you right now. That's never a good place to be. Do you have family and friends around to help and support you? That is so important for us all.😊

Hey I'm not gonna lie to you, your right. This thing sucks! And Bless Your Heart💕 you have been on this Roller Coaster along time. Your a Survivor to us all.😊

Jes 🌠

Lala88 profile image
Lala88 in reply to Jesmcd2

Don't really have no friends or family I'm by myself in this I sit this house everyday I can't go out in the sun in the world I can't go nowhere snow whenI'm confined to this little apartment that's what it feels like when I canget out I do what I have to do and get back in

jimeka profile image
jimeka

Lala88 , 28 years and counting. You may not realise it but even though you have this monster of a disease, on here you are a sign of encouragement. You must be a very strong lady to have coped like you have for that long. I have known about mine for nearly 7 years and it is hard, some days you wonder how you are going to make it through, but then I can come onto this forum and get encouragement. Knowing I am not alone on this journey. I hope you too can find some kind of solace here. I am sorry that we have had to meet under such circumstances but I look forward to hearing how you continue to survive this ms and maybe we on the forum can bring a smile to your face, as we all like to laugh, blessings Jimeka 🦋 🌈

Sandydemop profile image
Sandydemop in reply to jimeka

Hi Jimeka, I'm having trouble with the heat this year. It wasn't a problem other years. Now I feel stuck at home too. Tia for your kind words of encouragement.

SueAB profile image
SueAB

@Lala88 , Hi, I am SueAB and I have dealt with MS for 30 years and know it is not an easy journey. I would encourage you not to isolate yourself and dwell on the miseries of MS. Every county has a Department on Aging that might be a start. My Mom used to say, "The good Lord helps those who help themselves". I know that is a hard pill to swallow, but I live by that motto.

Mrkk profile image
Mrkk

You have to look at the bright side of things at least you're up right and still walking. We all have it bad I think me more than the most but studying things reading looking things up keeps me alive and hopeful. I've been in a wheelchair for six years and counting. Things are miserable for me everyday just waking up I wish I was still sleeping. The Heat and the horrible thing also. I love the outdoors but not able to stand it. When I used to work I installed sewers and water lines operate heavy equipment hard manual labor. Believe it or not I miss that so much. Now I'm stuck with this shity disease. You have to remember there are people out there that have it worse than you. Luckily I found this website which keeps me going and fighting. I do have 4 Kids and I need to be alive for them. It sucks so bad knowing that I can't do the stuff I should do as a father. Just watching them having fun playing running around tears me up inside. Your stories and the things you've been through help others struggle and deal with the disease. Even playing video games kill time and can be exciting. It's hard to play them anymore cuz of my hands. By the way I fall daily and my arms feel like Jell-O sometimes sometimes it can be hard to even move. And going to the bathroom don't get me started. Not having a significant other also is a big deal. I understand the things you go through are rough and bad and are very lonely. Things could be worse you can give up don't be a quitter

Lala88 profile image
Lala88 in reply to Mrkk

I can only walk with a walker to get to the bathroom and sometimes I get up off the toilet and I can't even walk with my Walker I'm just tired as s*** everyday my kids don't pay attention to me they got their own life that's all they life and that's all they live for

My grandkids are my joy both there young and sometimes I can't even do for them I'm just tired I can't even do my own hair it's hard to wash up myself I've been dealing with this stuff for 28 years I hate this disease I pray every night to just die in my sleep

I can't even go to church tomorrow cuz my legs are that bad to even walk to the Peru and used to be at Justin have no balance but now is hard to walk I'm in the last days number 5 and it's been hard then blonde twice Paradise three times lost my speech 2 times I'm taking all this medicine and I think my body is rejecting it just like it did with the avonex I'm just so miserable and lonely.

I'm tired

Mrkk profile image
Mrkk in reply to Lala88

I've been in misery also for at least 6 years. Not nearly as long as you but haven't walked for 6 years lost my vision for almost a year in one eye. Going to the bathroom and bathing myself is also a big task. Usually I can't get up from the toilet and the falling to the floor and drag myself to the bed. I spent about 2 hours trying to take a shower or bath whatever. My legs are very tight cannot move them in much pain. Three of my kids are young and all they want to do is have fun. They want me to do things with them but I'm not able to. They don't understand and it sucks plus trying to make them understand it's almost impossible. I can tell you for the last 8 months maybe more I feel hell of a lot better. I've been off all medications but the spasticity medication. I used to eat like a dog with my face to the plate because I couldn't use my arms. The only medications I take is the food that I eat. I do take turmeric and eat a lot of anti-inflammatory foods. I also drink water and take omega-3 pills. I believe this disease is caused from microscopic organism that gets in your bloodstream. Or it has to do with not eating the right Foods. no wheat no gluten no processed foods a lot of water no sugar I'm not trying to compare to your life or say that mine is worse. We need to push and try until you physically or literally can't do it no more. 8 months ago I felt that way exactly it was over. Somebody on this website recently told me of this medical doctor name dr. Wahls that was in the same situation as I. she is not doing trials on eating right to cure or treat MS. She ain't nothing but green Foods also. I have recently ordered her cookbook to see what the difference from what I'm eating then her. Food doesn't work then I guess the only thing left is stem cell. Hsct transplant FDA has not approved it yet it cost about $36,000 in Panama. I'm tired and I don't want to do it either but I always to myself my kids and God. if you need any food suggestions or just someone to talk to I'm here

Sandydemop profile image
Sandydemop in reply to Lala88

Hi Lala88, don't give up. We all struggle in our own ways. Thanks for sharing.

TonyiaR7 profile image
TonyiaR7 in reply to Lala88

Dear Lala88,

Sometimes I'm tired of my disease (MS 29+ years) and the limitations it imposes on my life. But I am not going to allow this disease to suck away all the joy out of my life. Yes, my church allows me to host a book club at my house. I invite people from church to come over for tea and chat or my music club to sight-read music. Sometimes folks will take me to movies etc. I unable to drive as much anymore. Recently, I investigated the transportation services my county and town offers. My county transportation will take me anywhere within my county plus 5 miles beyond. I refuse to just sit in the our house alone while my husband goes to work. I am already signed up to try them out.

And you have grandchildren. My children are 26+ years and not married or have grandchildren. I know they are a joy because I feel alive when I see my nieces/nephew's children. What a privilege.

I always had to come up with museums or any place with air condition so I could raise my children and/or send them to camp or a friend since I couldn't go outside most of the summer, especially between 12 - 6 pm and some days I couldn't go outside. I find that I can ride a bike better than I can walk. I even wear an ice vest in the morning or evening on some days so I can garden or admire nature.

Volunteer. You have so much to offer more than you know. And this site has many nice, interesting people to chat with or read their posts. Even join FB.

Sincerely,

TonyiaRobinson7 or just Tonyia

rlh1974 profile image
rlh1974

Lala88 I am so sorry we all get to meet you like this. Being in this dark spot has to really stink. Just know, know that you have come here. You have found the right spot to come and vent. We are all here! All have been dealing with this monster for a while. You have had a crappy run as of late. I am terribly sorry you are! Just remember, you are in all our prayers! We are here, have our own stories and hopefully can help. Feel free to write any or all of us. We will do our best to help you through this!

Prayers!

Rob

Sukie427 profile image
Sukie427

Hello, Lala88. I gather that you are new to this site. If you are, and you go back and read the posts of some of us who have been on here for awhile, you will see vastly different journeys but they all have one thing in common; everyone has been on a roller coaster ride with ups and downs. Some of those ups have been very high, and some of those downs have been very low. There are always days when I feel like giving up. I hurt, I can't think straight, I fall and break bones, an electric shock through my knee because of a demyelinated axon somewhere in my CNS causes me to scream in pain and crumple to the floor, I walk like I'm drunk and I feel that everyone is staring at me and thinking OMG she's smashed this early in the day, and on and on and I feel like nobody understands. That's when I turn to the friends I feel that I have made on this web site and they give me their support and I feel better enough to try to pick myself up and go on. We are all trying to survive, and hopefully to actually live with this miserably debilitating disease which is trying to beat us down. The battle is certainly fatiguing and all of us have lost much because of it: careers, marriages and on and on. It is OK to feel like giving up, but it is not OK to give up. It is OK to rest when you need to, but it is not OK to become glued to the couch. It is also OK to feel sorry for yourself, but not to become wallowed in self-pity to the exclusion of everything else. In other words, you need to keep on fighting, because life can still be worth living even with MS. I hope that you are getting proper health care with MS specialists who can help you through the rough times. And you will always have an ear hear. We come from all walks of life, from all over the world, and all different time zones so there is usually someone on line when you need them. So welcome, and best of luck. Sukie427

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to Sukie427

Well said Sukie427 💕 Please read what she said Lala88 😊

Jes 🌠

WAshingtongirl profile image
WAshingtongirl in reply to Sukie427

I second what Jesmcd2 wrote. Beautifully said, Sukie427 .

greaterexp profile image
greaterexp

Lala88 , we are all with you in spirit. I doubt that any of us have exactly the same situations, but sharing our feelings here can be so helpful.

You mentioned your church. I hope you have reached out to the folks there. I wonder if there are some people who would bring church to you or at least visit to break the monotony.

I'll sure be praying for God's comfort for you. You're important, so please let us know how you're doing.

Amore55 profile image
Amore55

Lala88 Hello, I'm Kelly. I am just heartbroken that you feel so isolated and lonely. This disease makes life so difficult. There have been many nights as I go to sleep that I tell the Lord I am ready if He wants me. But I'm still here dealing with excruciating pain 24/7, falling down many times a day, this week I developed optic neuritis. But I am going to keep going no matter how hard it seems, because quitting is not an option. You have found a safe, loving group of people who will become your family. With love, Kelly

erash profile image
erash

Lala88 We are here for you! Sometimes friendly listeners can help ease the misery 💐

Daisuki51 profile image
Daisuki51

Hi @Lala88 myself being diagnosed since 2003, I know how you feel:( I hope you will feel better and I cheer you from here in front of the computer.

When I was young I had never thought the internet will make everything make things supportive (in a bad way too:(. I hope this problem will be fixed:) I say hello from here. Hey let me know if you want to learn Japanese (my first language) . Learning language is fun. I am dedicating my time for cheering me up.

Have a nice day!

Jesmcd2 profile image
Jesmcd2CommunityAmbassador

Hi Lala88 how are you today?😊🌻 Did you see any fire works? 🎇🎆 I didn't, I slept right through them!😅

Jes 🌠

WAshingtongirl profile image
WAshingtongirl

Lala88 , I hope you feel less lonely and isolated here. It's hard to send a hug through the computer, but I hope you feel all the hugs shared with you here. Everyone else has said so much. I have nothing more to add than a warm welcome. We're here for you. 💕

Mrkk profile image
Mrkk

I was hoping you would respond to the text that I've texted. I would really like to talk to you so please if you see this message please text me back. I don't know you but I feel like we have a connection. I think everybody gets depressed with his disease and I hope you're doing something to get rid of the depression you told me your kids have their own life and your grandkids are your life I pray that your kids will be there for you when you're in the time of need. Sometimes you must directly tell the people that love you that you're lonely or depressed. Otherwise they might think everything's just fine.

mserinNJ profile image
mserinNJ

Hi Lala88,

I understand where you're coming from. MS is a terrible disease closing down many areas of living. In my case, I had to give up my career. Fortunately my company has a disability retirement, my wife changed her job, so we've been able to keep the house we've been living in.

The key is to find something positive. It may be as simple as having fed yourself for one more day.

On this point, how do you get meals: shopping and cooking?

Lala88 profile image
Lala88 in reply to mserinNJ

My wheelchair go grocery store with my wheelchair shop with it I go back and forth to the bathroom on walker or a little bit using eat things in a microwave a little have to cook

ssdw1958 profile image
ssdw1958 in reply to Lala88

I Think we both get around the same way I use my walker in the house but lately I've been use my wheelchair outside. I really need to do more exercising so that I can get some more strength in my legs. But that is hard to do when you get so hot I really just want to put my legs up and put ice packs on my knees. I lead Such a thrilling life NOT LOL. If I don't laugh about it What else do I have do.

Hang in there!!

mserinNJ profile image
mserinNJ

Hi Lala88,

You've right; MS has a major impact on our lives. Everyone's MS is different, and the impact is different. What's the same is that we're all alive. It's something; consider the alternative.

How do you get food and shelter? Someone must be helping you. Much of the world has issues getting these two items.

So in addition to the parts of our lives that have issues, there are parts of our lives where we're succeeding. Keep your chin up!

Lala88 profile image
Lala88 in reply to mserinNJ

I do everything myself I live by myself I cook clean and everything I'm trying to get enough now

You may also like...

Tired of being tired?

has gotten to a place where I'm tired of being tired. Yet, I can't get myself to get started again....

Tired

here again. Whoopie.... I'm just not feeling it. I'm tired. I feel like such a Scrooge. I hate...

So tired and emotional!

just went through. Do this stuff happen so fast like flicking a switch? I kind of feel like I am

I'm getting AWFULLLLLY tired of this.

Got MORE bad news yesterday, and I have decided to throw myself a PITY PARTY. But because of the...

Tired of feeling depressed

overcome with feeling bummed and depressed with the effects of how MS has made me feel. It’s taken...