Crumbling
 

:( I'm new here. I am trying to stay so positive. But today at work I just got so exhausted... I am home now, but feel like I am crumbling... physically and metally. Too lie down doesn't even help. I guess I overdid. But I don't know how to keep from it. I don't know how to go through every day feeling this way. Does anyone out there feel this way. Does it ever go away? Is there hope?

Hi Friend2U

How long have you been dx?

Fatigue is my worst symptom. I found the attached description the best I've run across:

http://www.lamarfreed.net/fatiguems.html

Cherie

I'm constantly struggling to try to find when to push it and when I shouldn't. I know where you are coming from. By the end of the workweek the past month, I've been wondering how long I can keep working. I started provigil this week - hoping it helps. No energy, but I don't feel wiped out, so it seems to be doing something.

Have you tried any of the fatigues meds?

Dear Friend,

I am sorry you are struggling.

There are anti-fatigue meds, as stated B4. They work differently for each person.

I take Amantadine with gr8 results. But last week, my naturopathic doc stared me on a cleansing diet. I haven't felt this great in years and no Aman!

Diet and exercise really help!

Best wishes:)

Hi, Friend2u, i think we can all understand where you are coming from, i followed the link that one of the others provided and i agree that it is the best description of fatigue that i have come across. Fatigue is such an innocuous term, it sounds like nothing much but of all the symptoms i have, this isthe toughest one to deal with. as for the anti fatigue medications, i hve asked 2 neuros and my Gp about them and have been told that they are not used here in australia (mainly because there is no proof they are effective- thats the comment from the medicos i aksed) but i know many of you guys use them and get some relief from them. All they have suggested to me is to see an OT to get advice about energy conserving strategies to use, i did this and it seems they can't suggest anything i am not already doing. Hope things get better for you

Dear Kind People,

Cherie, Thank you for the article. It seemed to describe a lot of what I feel. I was diagnosed just about a month ago. It explains things that have been going on for many years. Everything seems to have just come to a head.

Kathy and Anne, I have not tried any meds. This is all so new. I seem to be in the middle of a big waiting game. The doc want to get me started on Betaseron, because he said it is not in the early stages and seems closer to secondary progressive. Right now I'm waiting to hear from insurance.

There are just so many issues (symptoms) and I can't take steroids because of reactivating hystoplasmosis that occurred in my eye when I was young. So right now I'm taking nothing other than Tylenol and Aleve. Doesn't really do the trick.

It's just so frustrating. I am use to going beyond the call of duty at work. And gradually it has gotten harder and now almost impossible. I sound like I am really whining, which is so out of character for me. It's funny what a person will tell people they don't really know as opposed to the ones who are closest to them. I think I am still sorta in denial. But it doesn't look like this is going away.

Anyway, thank you all 3 who answered SO MUCH! It helps just knowing there are people out there who understand. God Bless You!

Kebsa,
Thank you for your kindness. I appreciate the ideas and experiences that others have already been through. I do know that I have read so many times that ms is different for everyone... which is odd since it seems, yes we have differences, but we have a huge common bond. I wish you the best.

Friend, i must admit that you do sound a bit beat up right now, just remember this is not something you can power through if you try hard enough, i tried that approach and all it did was left me so exhausted i could barely function at all.
You may be able to notice to things trigger your symptoms including your fatigue, if you can that at least gives you some control. Try and be kind to yourself though. If you are the kind of person that usually gives 110% at work you are likely to find this a very frustrating time, just remeber that there are many of us here that you can share with. I have just been going through a really rough time with an escalation of my symptoms, i have been in hospital for most of the last 3 months,( i have been out since last friday and that is the longest i have stayed out for months), fatigue has been the toughest feature for me to deal with and has literally had me bed bound for most of the time. I hate it, but i have learnt that if i try to fight it when its bad, i just feel worse and it takes me longer to get back somewhere close to normal. I really do hope ou feel better soon

Friend,

By far, fatigue is one of my worst MS symptoms and one I deal with to varying degrees every day. There are various meds out there your neuro can prescribe for fatigue. Keep in mind everyone is different and the first one you try may not necessarily work for you. I tried Amantadine first, but it didn't work, so neuro switched me to Provigil. It's the reason I'm still able to work full-time.

The most important lesson I learned is to take it easy on yourself and listen to your body. I've had to leave work a couple times in the past to come home and lay down.

I hope things get better for you and you'll be able to find some relief for your fatigue.

(((HUGS))) Sorry to hear you are having a rough time right now. Totally understand. Things are popping up at work for me too from some of my issues.

The others were right. There are meds that can help with the fatigue. You will learn to listen to your body and learn the new limits you have.

Being stubborn, I of course have a tendancy to test those limits. :rolleyes: Sometimes I still hit "the wall" because of that. I also have what I call the "pay to play" program. If I push to hard on one day, I'll definitely feel it the next.

Hang in there, and know you are not alone.

Fatigue can be so debilitating. I hope you find something that will work for you.

Learn to pace yourself was the best advice I received. My brother was in neurological research for many, many years including MS. He was the one that talked to me about pacing myself as when I do have energy I go like a bat out he!!. There's no stopping me. I am slowly learning to pace myself but it is hard, especially when I feeling good.

Good luck with everything. You are not alone in what you are going through and we are here for you.

Fin - That is me to a T! lol.

Prayers are with you. This MonSter can be so cruel!! Hang in there, it will get better.

One big, warm, tight, hug, handshake and howdy, moose-size official type welcome to the site.



Task Force Moose Protocol:

Retreat: Pull away and push back some of what is wearing you down. Multi tasking is over-rated. Allow yourself some leeway or concessions without slipping into a pity party. Accept that some things you can't change. Find those and let them go. Just excess baggage in this juorney through life. Who needs it?

Regroup: You weren't specific but that's OK. There are always positive options in getting help. ---Sometimes you can get so low you can't see it and just want the pain to go away. Trust me. I have been there.--- Coming here is a great first step in getting help. Make small changes you can live with and a plan you can enforce.

Reload (My favorite part). Putting the plan into action and watching the results. Making lists and keeping a journal has helped me a lot. If for nothing else, to get the emotions out.

None of these steps are to be rushed.
I hit rock bottom 6 Oct 05. Two years after diagnosis, I had become a worthless drunk. Turned to self medicating as it were. DUI, MANY broken bones, some didn't heal right. Three months in 2 different hospitals.
Lost almost everything.

I share this so you know I'm not blowing smoke. And never forget...

You are not alone.
You are one of us.
And we are here to help.:):D:hug:

[QUOTE=MooseasaurusRex;195424

Retreat
Regroup
Reload





WELCOME!!!



MOOSE, YOU MADE ME FEEL BETTER AFTER A BAD START TO THIS DAY. THANKS.

So many have given you such good advice, I just wanted to say Hi and hope you feel better soon. Being newly dx'ed, I'm sure the stress level is pretty high too....hang out here more, and I think you'll get more relaxed...

None of us are as smart as all of us!!

:grouphug:

Friend,

One piece of advice that may not make you very happy, but try to avoid the roller coaster of refined sugars.

I have learned that my system is so sensitive to sugar now. I used to just start grabbing for sweets and salty foods. Try to keep your blood sugar steady. If you get a hunger rush eat almonds, fruit and raw veggies.

I am doing so much better when I avoid processed foods, even sugary salsd dressings.

Please let us know how you are doing. We do all care. :grouphug:

We may all be in the same boat, but we don't have to sink the ship!:Sinking:

Hi! You've gotten a lot of sound advice from many. I just want to let you know you are not alone. :hug::hug::hug:

The first year after dx is a very emotional time, and the grieving/adjustment process alone can be exhausting. After you you have 'some' sense of acceptance, the fatigue may let up.

Not everyone has fatigue as a symptom, or at least not a major one, in the long run.

In the meantime, you need to pace yourself. For some of us, that means doing more one hr or one day, then taking it easier another. For some it means that ALL they can accomplish in a day is working.

I learned to manage my pace, and it worked for 14 yrs. When the MS became a full-time job, ie. I couldn't even squeeze in 6 hrs of work, even though I worked from home on flex-time, I knew I had to leave the workforce.

The more stress you are under too, the more fatigue will be a problem.

Cherie

What great advice from you all. Kebsa, you said "just remember this is not something you can power through if you try hard enough"... this SO hit home for me. Talk about a reality check. This "barrel on through it" mentality is exactly what I have been doing for the last few years. When I look back on it, now I see how it has just gotten worse and worse. I guess, I have some major readjustments to do, right now.

I am just so wrung out right now that I can stay on. But EVERYONE I feel I've found new friends who really understand. I humbly thank you all. Wish I felt like chatting with each of you. I'll say a prayer for you and will welcome the same. I feel guilty even making this thread "all about me". That's just not who I am... I send you all my blessings. I'll check back another time. Thank you.

Retreat
 

Hello EVERYONE! I want to get to know all of you and maybe I can be a good friend like you are all being to me. It will take time... I'm kinda slow... I want to learn about each of you.

for now... MooseRex, What sound advice. THANK YOU for explaining your background. I like what you had to say. And I like the way you said it! ... love taking things one step at a time.... doesn't seem as overwhelming. I am now working on "retreat". Left work at quitting time today! :) This use to hardly never happen. I'm trying... I'm planning a relaxing weekend and some think time.

No, I'm not too good with my own details. But given time... maybe will let my guard down....

Thanks for your "official like welcome" and the hugs... Have a good weekend!

Back sliding and don't know how to stop!
 

I'm really mixed up on this ms life.:( It is IMPOSSIBLE to finish raising 2 teenage kids, "be there" for 2 adult children, and be basically a nurse for an ailing husband, and work full time. Sounds like a pity party. But I've backslid into powering my through life and today I'm so depressed.... can't stop the tears. Please help me know how to slow down with life and still feel like I'm being a good person. I just want to crawl under a rock and stay there. I hope somebody hears me. I have no one here to talk to.

What you are trying to do, with MS, is next to impossible. IF you manage to do it for much longer, it will be at a huge cost to yourself . . . and then where will you (and everyone else) be?

It sounds like it's time to do some prioritizing and make some decisions. If I was in that situation:

- I'd let my ADULT children manage on their own. Your job as a parent; to raise them to be responsible & independant adults, is done. If they didn't learn everything by now, they need to . . . fast.

- Your teenage children may have to try to be of more help to you. If they are busy working part-time, getting "A's" and "B's", and/or exceling in sports (in order to win a scholarship), then you might have to pick up a large part of the slack at home. Otherwise they should be doing that for you.

- Leaving the workforce is difficult, both emotionally and financially. I had to make that agonizing decision, but it was the best thing I could have done. Start thinking about how you might be able to cut down responsibility or hours, before that decision is made in spite of you.

I'm not sure what the story is with your husband, but that must be hard to tend to an ailing husband. :( Can you afford help? Are there things you can do differently to conserve energy in that regard?

We all want to be super-mom and wife . . . but it can't be done with this disease, simple as that.

Sorry to hear you are feeling so bad. Are you on antidepressants (I didn't read the rest of this thread)?

You need a break, and you have to give yourself permission to not be "perfect"!

Cherie

Just want to offer some :hug:'s to you...you seem to really be going thru a tough time. Cheri offered some good advice. We all know it is easier said than done, so you must give yourself time to adjust.

I've heard some talk about getting on adderall or ritilin to help with energy, and you may want to discuss this, or another alternative with your doctors. Now is a good time to build a really good relationship with a doctor, as I think he/she will be your best ali when it's all said and done.

As for all the tears, I understand darlin', and I feel so bad for you. You need a big hug, and maybe even some antidepressants while you learn to deal with the full plate you have. Depression alone will suck the life right out of you. Once depression becomes chronic, you are at its mercy until you get 'help', whether it be in pill form, therapy form, or both. You can overcome this.

If you have the time to read up on the many souls here who are living this illness every day, you'll see that many, if not most, have learned to incorporate this madness into daily life, throw in some humor, and make it work. I wish and pray this for you as well!!

Now dry those tears, and start making a plan. You've been a care taker for along time, you know how important it is to care for yourself....and its your turn. Blow off the dishes, only wash the clothes you need, make batches of stews, soups, chili, etc for easy cooking all week and drink lots of water to stay hydrated.

Your family will learn to adjust with you, count on it. Do you mind me asking what ails your DH? Whatever the issue, I pray for his health as well and do hope you feel better really soon!

You are not alone in this, really!
:hug:

((((((((((((((Friend2U)))))))))))))

Thinking of you and sending up prayers for strength.

We almost lost my DH to colorectal cancer last year. It was initially missed by one dr and 2 years later, the tumor was so large it was attached to ALL sided of his pelis and his bladder. It ruptured, but the surgeon was able to get it out without it spreading. He finished the last of his chemo about 5 months ago. But his has lost a lot of weight even since then and is is much pain. Has trouble getting around and functioning. I am praying it hasn't spread and that this is just aftermath of the chemo.

Thank you both for your advise and encouragement. Cherie you are so level headed. I have read many things you have shared in other threads. You are both very kind. I know I have to be level headed and make changes in my life. It is just overwhelming right now and seems impossible.

Cherie, part of my stress right now is my work. I am considering an early retirement. It's just so hard because it seems like defeat. I was not finished with all I wanted to do with my career. Sometimes I just get so mad. I know God doesn't give us more than we can handle. And I also know that I can grow for the Lord through this. My brain knows all the right things. But my heart just doesn't always "get it".

I just needed a shoulder to cry on tonight. Thank you both for letting me do that. I'm sure I will pick myself up by the bootstraps shortly... I always do. I am just going to have to find a new way, because I know "powering through it" is not an option anymore, as was mentioned to me earlier on in this thread. I just have to find my way through it all and right now I'm just a bit lost.

I have always been the listener and fixer for everyone else. That's the way it is supposed to be for me. God is teaching me something, but I'm just not sure what.

Thank you so much for caring! :hug: Sometimes that is enough... just to know there is someone out there who cares!

Thank you for the compliment. :hug:

I'm sorry to hear about your husband. What a stressful time this must be. :(

I spent several years getting my education, only to be struck down in my prime (age 31). I continued to work for 14 yrs, but I had to down-grade my career aspirations very early on, and that was a blow. It was even harder when I had to leave the workforce all together, so I understand your "unfinished business" feeling.

I tend to be the caretaker type too, probably because I didn't get that in my own home. My mom was schizophrenic (in a bad way) and my dad, who was a drunk, died when I was eleven. I want to do so much for my kids, to give them the very best opportunities in life, but I simply can't.

There are two things that have helped me accept my limitations; all of us kids (my sisters and I) survived our difficult home situation well, and my Grandmother raised 18 kids that all turned out fine. Every time I think of what I would like to be able to do for my kids, I ask myself "if I had 18 kids, would I be able to do that?". Clearly the answer is "no" . . . and since I know first hand that children can prosper without being "taken care of" . . . I know my kids will be fine too. :)

It's time to take care of you, so that you will be healthy enough to spoil the grand-children (every other Sunday ;) ) for many years to come.

Cherie

try to pace yourself, easier said than done

but if its gonna be a long day at work dont do dishes and laundry before going, so forth and so on

try to relax about the fatigue dont stress over it, it is a very common thread among us all here

some of us are on provigil to help counter act the fatigue, works for me

but like this illness, it hits us all differently as do the meds

try to rest and have a wonderful week

Friend, I am so sorry to hear about what you're going through and all you've BEEN through. You are so newly dxed that the emotional toll itself must be taking a toll. Every single one of us can tell you, despite of where we are in our journey or how it's manifesting itself physically, it's overwhelming at first. Not that it ever ceases to stink, but that part does get better. Don't feel defeat on any level -- right now it's baby steps. Give yourself a break and for now, just take it one day at a time. You are not alone!

Wow, I can relate to what you're going through. After my diagnosis, I was in the midst of caring for my ailing parents remotely, traveling each weekend to see them out of town and it was wearing me out combined with work and home life. My MS and general health suffered greatly.

And don't apologize about making this about you. We all do that from time to time. We need to do that to let out our frustrations. :hug:

Wow, I could have written that myself. I can feel your pain. I just hate it that this happens to so many of us. :hug: Please go easier on yourself, and really think about the article on fatigue that Cherie posted the link to. I re-read it myself, and it's right on. I hope things will settle down for you. Also, I hope your husband will start to feel better, that has to be so incredibly difficult not only for him but you too.

Thank You All...
 

...for you words of encouragement and understanding. I can't express my gratitude. I just can't stay on here too long now, but will pull these up through the next few days and read them again and again for strength. They will help me sort through things. :hug:

I am sorry that anyone else has to go through this, therefore is able to relate... and I know you all feel the same. Such a caring community of folks. :grouphug: Thanks so much!

Decision to Reduce Work Load
 

I have decided to work just half time starting with the next school year. :( I have already worked it out with my district. They are very supportive... I am very lucky in that way. I was considering retiring completely, but just can't close the door that tightly yet.

You folks have helped me work through this MORE than you can ever realize. :grouphug: The decision was SO huge for me. It's hard not to feel like a failure. :o But I now realize that it's just me feeling that way, not the rest of the world. This has been a big step for me. It's hard to let go of the person I thought I was. I'm starting to look at myself as someone a little different, not lesser, just different! This is such a huge revelation for me.... it bring tears to my eyes as I share this with you... It's bittersweet.

My hubby, feels I probably should retire full time. He is the one who sees what I look like every day when I get home. But he is being very supportive of me not being ready to give it up completely. I'm not completely confident of if I can make it even half-time. But I have to try it that way.

Thank you so much for your kind words. I have done just as I said and pulled them up several times to read them for strength. :hug: I love you all.

I won't complicate it with more words.

Just a big Moose hug for you. ((((Friend)))):hug:

Hey Moose~
 

Thanks so much.... you have to know that what you said earlier in the thread in your Moose Protocol... "Multi-Tasking is Over-rated"...

I will have you know that I WAS (IN BIG CAPITAL LETTERS) was the QUEEN of multi-tasking. :cool: You were so right....over-rated big time!!!

I am now SINGLE TASKING! Still the 'queen' ...ha!...but slowed down big time! (Can't give up everything!) :p

Tapering off is the name of my game now! Thanks for the advice! :hug:

Hello dear,

I am sorry I missed your original post but glad to read today how you are changing and adjusting.

I too had a disabled husband and a very challening marriage as a result. Not his fault, as he had short term memory damage and I had very intrusive in- laws. I fought for him, advocated for him until the end. He was so toxic from his medications, 2 brain operations, etc that he died, suddenly and unexpectedly. I am glad for him that his suffering is over after 46 years of meds and seizures.

I never knew what a toll taking care of him and putting him first played on my health until now. He also was upset I think that he could not truly care for me a I did for him. His parents played that up and as a result he would live with them and not me.

STRESS can and will kill, slowly or quickly. We must take that seriously. Prioritizing, and delegating is so important. AND to re-think your goals and calling in this world..amazing!! What a learning experience!!!

Keep us informed and let us know how you are doing, the good and the not so good.

Warmly, Jan

Dear Jan,
 

Thank you so much for sharing with me. I am truly sorry for what you have been through and can certainly relate to most of it. It can all be so very stressful. My hubby does feel so bad that he can't be the one to take care of me. I try to let him do little things for me when he offers, even if I don't really need the help. We are just doing the best we know how to do... taking it one day at a time. Luckily, we have God in our lives... We are still human, however, but having our faith gets us through a lot.:)

I wish you the best. Yes, I will keep you updated. I have gotten so much good from everyone here at NT. This website is truly a blessing. You take care! :hug:

~Friend

In addition to drugs for fatigue, I'd suggest getting ahold of the local MS society for help. There are local support groups that you can join and these groups will be a life saver for you, trust me. You need to hear what others are going through and you need to tell what's happening to you to others who have been there and gone through it.
Don't delay make the call and go visit them. That is why so many people walk for ms.

Michael,
 

I had kinda "forgotten" about a local MS society, though at one time I did know about it. That is a good idea. I live about 60 miles away from the city where it is, but when I go back to town, I am going to check it out. Thank you so much for the advice! Take care!

Hi Friend...
 

Hi Friend,

It sounds like you are truly taking care of yourself by deciding to reduce your work load...though I understand the feelings associated with that :( I'm sorry you are having to go thru this.

As for MS Society stuff - they offer lots of support in addition to in-person stuff. I recently completed a TELEPHONE support group for newly diagnosed individuals (I think we ranged from 1 month dx - me - to people dx a year or so). Anyhow, every Wednesday night for 8 weeks we would meet on the phone together. It was run by a therapist. I know it might sound weird - and at moments it was - but it was also really good and helpful to me.

They also have a program called "Knowledge is Power" where they mail and email stuff to you.


You should check out what they have to offer you: 1-800-FIGHT-MS.

Good luck,

~Keri

Thanks Keri!
 

I appreciate the phone number and will give them a call. I "think" / "hope" the shock of it all is sorta wearing off. Maybe going into having summer break in a couple of months, I can kinda settle in and get better oriented. The last few months have just been a whirlwind. :Doh: I am trying very hard to be realistic and starting to make some gradual changes that will be beneficial. Thanks for the help. You are all great! :hug: