Not my life anymore

[luvhair]

Hi everyone..im just struggling idk i just dont think steroids helped..soo tired..so just bumped out i just cant handle and accept this its not my life anymore..i try n try and i cant have myself back..iits been real bad lately just from bed to couch just a struggle .thx for listening...xo

[Royjr]

Idk but it sounds like you need a shoulder to lean on and SOMEONE to vent too. Stay strong!!

[luvhair in reply to Royjr]

Yea your right and livin here all alone this hello has taken all my social ability from me ..just overwhelmed anymore wt it..never a break from it..im tired

[carolek572 CommunityAmbassador]

luvhair , I agree with Royjr Do you have someone that can come over and keep you company? Have you reached out to your medical team to let them know of your current circumstances? Stay Strong!

[luvhair in reply to carolek572]

No i dont have anyone here.i got this and everyone disappeared..ive told my doctors say blood work nt tht bad. They say get out more yea to were easy to say when you dont hv it...and fatigue n anxiety n cognitive issues..youngest son thinks its fun n games..my middle lives 30 min away really sick with chrons..which i hv also..they botched his surgery new dr wont fix till he can not eat so his sick..my other middle son n Manhattan n his wife has always caused drama always. My oldest n texas. He said he fly me out there n few months. N mabe i like it there enough to move he has my 4 grandsons..n daughtern law they came for xmas miss m alot..my life was my kids and my doing hair and socialize ing..never lived alone ..ever..wouldnt be so bad till i got this..ive tried putting a positive with this and im not feeling positive ..thx for listening yall.

[carolek572 CommunityAmbassador in reply to luvhair]

Please stay positive, because steroids can be the issue here. Let your doctor know what is going on. I am hoping for better things for you.

[luvhair in reply to carolek572]

Thank you gal..idk this issue why we did steriods anyway im tryin my best stay positive..and accept tht i have to agree this is how my life is now.xo

[TracyBelle in reply to luvhair]

Steroids can make you feel like you are someone else. They prevent you from sleeping, so you slowly become less and less sane. The sleep you do get is fragmented and unrefreshing. My dad said (during a round of steroids) that when he closed his eyes he would see a ceiling fan spinning, but when he opened his eyes there was no ceiling fan at all. The imaginary fan kept him awake even though his room at that time didn’t even have a ceiling fan. He had a ceiling fan in his old condo- which he had left 10 years earlier.

I am just trying to let you know that once you get off the steroids, you will feel more like yourself. You may never feel the same as you did before MS, but thankfully steroids (& the hellish side effects) are only for a limited time.

Don’t make any judgements about your condition or major decisions about life until the steroids are out of your system. Roidrage doesn’t necessarily make you violent but it messes with your inhibitions and long term decision making. Temporarily, of course. You will feel better once the steroids clear out. Hang on till then!

[falalalala in reply to luvhair]

The trip out to see your son and family is a definite positive. It is something nice to look forward to and you have a good amount of time to prepare for a trip,cutting back on stress or anxiety one might get while planning things.Make lists to prepare.

Another thing is that he and his family will see firsthand what you deal with on a daily. That could also be a good thing as he will mention these things to his siblings and they hopefully will gain a better understanding/empathy of your situation and possibly offer more help to to you.

You will also get to spend time with your loved ones which is always nice.

[luvhair in reply to falalalala]

Yea exactly. I like what you said.xo

[falalalala in reply to luvhair]

I'm glad to help, luvhair.

[luvhair in reply to carolek572]

Thank you..ive tried reachin out to people basically this site really only place i can say what is going on and you guys understand wht im saying.xo

[carolek572 CommunityAmbassador in reply to luvhair]

I have been there, and while it is overwhelming, it does get better. Please reach out, to doctors, to family, to friends, to forum members. Stay Strong.

[jimeka]

Hi luvhair, the weather doesn’t help either. Sometimes, depending on big a dose or how long you have been on steroids, they can actually help you feel more tired. I hope you are feeling well enough to drink plenty and eat, you need to keep your strength up, and if you feel you are getting more depressed please have words with your doc and get help. Maybe call someone who can come over and share a coffee with you and you can share how you feel. Keep in touch so that we know how you are doing. Blessings Jimeka 🤗

[luvhair in reply to jimeka]

Hi it was at beginning of month tht semomerol.iv 5 hours for 3 days..i really thoght first week it was gonna help but i hv doubts..i hv tried invite people over and no one comes..deprssion i can only take 150 of well butin..n a very small small dose of mood stabilizer..any bigger dosages i hve problems.imma hard rare case they say.idk i cant stand sittin here and tv no energy go try n do somthing..ya know cant take any ms meds as i said before cotracted jcv and im not riskin the meds n drs are agreeing also plus tge risk on top of my issues on top of side effects of ms meds wouldnt be good.xo

[jimeka in reply to luvhair]

Like you I have had a very hard week. I have actually admitted to my hubby that I need help. My hubby works around the clock, and now I don’t drive, and can’t take the bus, like you it can be days before you see another person, everyone leads such busy lives. So today I decided that I would try and turn it around. Only I could change the way I feel, nobody else can, and why should I feel miserable all the time. It’s hard to fight through the pain and fatigued but I saw a rose in my garden, and it brought a bit of beauty into my life. Look at that picture you made, it was beautiful, you have a hidden talent, maybe have a go at something new, see how you feel when you have accomplished it, you can sit back and say ‘I did it’ big hug, Jimeka 🤗

[luvhair in reply to jimeka]

Ty much xo

[Peruzzot]

Hope you're feeling better soon. Fatigue sucks all the energy out of you. I'm still trying to find a way to banish it but no luck so far.

[luvhair in reply to Peruzzot]

Yea i know i ..its a horrible deal..i wish a cure culould happen for us!

[greaterexp]

I don't have an answer, but know you are in my thoughts and prayers. This is definitely a good place to come for soft shoulders and where people really understand.

[luvhair in reply to greaterexp]

Ty guys rough time xo

[greaterexp in reply to luvhair]

We all have them - either physically, emotionally, or both.

[Royjr]

I agree with everyone here. Stay strong luvhair and keep us informed on how you doing.

[luvhair in reply to Royjr]

Ok ty xo

[RoseySawyer]

Stay Strong 💪 and Positive! This shall pass. ❤🌷

[luvhair in reply to RoseySawyer]

Ty im trying xo

[erash]

Sending you good wishes and hugs

[luvhair in reply to erash]

Xoxo

[nicoly3467]

Hi Luvhair,

I’m so sorry you are having a difficult time with MS right now.

If it helps any, I’ve been in similar situation feeling the same way emotionally with extreme weakness and intense pain more times than I can keep track of with relapses and bad pain days like today.

Are you having a relapse right now? You mentioned steroids.

Nikki

[luvhair in reply to nicoly3467]

Idk whats goin on..

[nicoly3467 in reply to luvhair]

I hope you receive more help from your Neuro doc to feel better.

Nikki

[Fancy1959]

luvhair, it's Fancy. A couple thoughts pop to my mind. First I hate to hear you talk like this. Do not let this monster beat you fight fight fight for all yo're worth. Secondly have you been to see your neurologist lately since you have this increase in exhaustion? This is something he or she needs to know about. What DMT are you currently on? There's always nude EMTs on the market and perhaps you should try a different one to see if you can get better results or get new and or different support medicine to again give you better results.

Remember MS cannot take your life from you. Our human spirit is more adaptable than we ever give it credit for. Your life might be on the path that you had planned out prior to your Ms diagnosis but that does not mean your life is over. Make your goals smaller and set out to meet the smaller goals and then before you know it your small goals will add up and you'll be meeting a slightly larger goal. Have you ever done physical therapy? It is always been a blessing and a true inspiration for me. If you work with the physical therapist and continue doing what they do at home you will see Improvement, even if it's ever so slightly at first.

Please keep me posted on how things go know that I'm reaching out a hand to you to help you through the rough spots. You are never alone in this fight in the struggle against this monster we all live with. Just reach out and grab my hand and I will pull you back up to feet and together we will find a way to beat this monster. Thinking thinking of you and helping you take care. Remember together we are stronger fight on MS Warrior, fight on! Fancy.

[goatgal in reply to Fancy1959]

Fancy1959 That Alexa!! You say "new DMTs" and she hears "nude EMTs"...and someday, when self driving cars are the only option, mine is going to argue with me when I want to take the slow route past the old house on the hill, across the creek and over the hill because I love the way the trees arch the road. Progress ain't all it's cracked up to be!

[luvhair in reply to Fancy1959]

Hi no meds with havn gotten jcv..thry say to risky...ok thsnk yoy

[RoyceNewton]

Take your time friend. You are correct this is not your life anymore. At least not as you recognize it. This is your New Relapsing Remitting life. It is not a life that you or me or anybody else asked for, but it is a reality that we all have to come to terms with and learn to live with. I am sorry that you are in this position BUT let me assure you it is tricky but it IS something that you can learn to cope with it just takes time. Ease up on yourself you will learn its tricks and maneuvers and you will be able to cope with it.

Good luck and be gentle with yourself.

[luvhair in reply to RoyceNewton]

Xo

[quegh]

Hi luvhair. It is nice to meet you. Obviously the circumstances are interesting.

You are slogging through a hard, hard place right now. Kudos to you for reaching out and doing it. Sometimes in situations like this, I say "Actually, this is too hard. This is too hard for anyone." and that is my starting point. Once I get over that, then, I don't know, I feel like it is more fair to go through it.

You will feel better. You will really feel better even if it just a bit it will keep coming.

We are in it together. Reach out and continue reaching out.

Hope you feel better ASAP.

[goatgal]

luvhair I'm so sorry that you are so down, glad that we are here to listen and send our love to you, but wish we lived near enough to come in for tea and cookies (our treat!) Since I am not nearby, I'm wishing you tea and cookies, a soft lap robe to keep you warm, and a promise to listen every time you speak. Cabin fever affects almost everyone, and MS makes it especially difficult. I hold you in the light.

[pamgarner]

everyday I hold on to the thought that EVERY day is different,some better some worse, but hang on because this too shall change. It is sooo hard when you feel bad you think it will never end,but it will

[luvhair in reply to pamgarner]

Xo

[Yooper]

You are on my prayers 🙏 today. We have all been there. Just went to Kennedy Space center with our granddaughter. She had to push me in a wheelchair all day. Keep positive and enjoy all the good moments.

[luvhair in reply to Yooper]

Xo

[Marcih]

I understand 100 % , day by day. Its eaisier than thinking about whay could happen to me. My walking to day is with a walker, to stay steady... In the house 😔

[luvhair in reply to Marcih]

Xo

[Angid1122]

Sending prayers your way! Hoping things will get better with time so try to stay positive! Blessings!

[luvhair in reply to Angid1122]

Xo bless to you also

[Juliew19673]

Luvhair, I was you a month ago. I'm so sorry your having such a rough time! I found that after I have given up sugar and started Probiotics it has made a huge improvement. Hang in there!

[luvhair in reply to Juliew19673]

Yea im kinda wondering hv been eatin lot of sugar..

[dearydear57]

Bless your heart! I am sorry you are struggling so. I do know how you seel, though. I suffer from depression year round, but especially in the winter months. My psychiatrist is trying to adjust my meds to help me feel better, but I'm not there yet. Would rather just stay in bed all day. But, I force myself to get up and get things done. Then I reward myself with a visit from my 5 yo granddaughter and a bowl os ice cream.

[luvhair in reply to dearydear57]

Xo

[6092177588]

I wish I had the words to say. Some days I feel strong to accept and I know that I have a high tolerance for pain. Listen,pray,and know that God gives you what you need. You may feel weak but together we are stronger.

[luvhair in reply to 6092177588]

Ty not feelin strong

[scooterjon58]

Hey Luv, hang in there, I know how you feel. MS is a bitch. I ride my scooter about 12 hours per day. Between pressure points on my rear or the blood clot on my ankle cause I'm riding too much on a daily basis I don't know what the heck to do. I also go from my bed to the couch and then back to bed. Not much of a life! I just wrote a post on my blog "Not Dead Yet" because I did some venting of my own. If you want to check it out go here... scooterjon58.com

[luvhair in reply to scooterjon58]

Ok awesome i will

[232323]

I know what you mean. Everything is such a struggle and with MS it only promises to get worse. It’s not a disease that cripples you all at once and leaves you to deal with it.

MS keeps taking and taking until I just gave up. It finally won

I find it hard to find meaning in my life. Even worse, I find it impossible to be happy for other people when good things happen for them.

I actively wish they were in my boat struggling with this.

People say other people have it worse. What kind of depressing coping mechanism incorporates that?!!!

[luvhair in reply to 232323]

I lnow rite xo