Feeling blue......
 

Hello all! Thought I'd get on and just VENT! Friday was my 35th bday but I was being released from the hosp so my hubby had my party Saturday...it was great, but I am worn out!:(

I try to stay upbeat, but there are times when I just want to scream and cry! My old life was sooooo full - I was able to get everything done and now can do it only 30-40% of the time.......I know there are a lot of people that are worse off, but I MISS MY OLD LIFE!!!!!!!

Granted, I know how lucky I am to be where I am today, but I just feel awful.....can;t stand the uncertainty...one day I feel great and the next can barely get out of bed.........

I was so excited about going into work today - had my clothes all laid out and then woke up barely able to do anything - got out of bed @ 1:00......

Hate this damn disease! I know that there is ALWAYS a chance for remission, but am just feeling whiny.........I had more energy @ 20 mgs of pred than I do now........if this continues, I'm going to ask for another immunosuppressant and see how that goes.........

I konw this sounds like an old country and western song, but I just feel so down.........

Erin

Hugs for ya !
 

Hello Erin !

First of all, happy birthday !!!! :hug: It is better late, than never :D I hope you have enjoyed your party. I saw your pics and seems like that :)

Well, you know, I dont have MG, but all the posts that have the word "blue" on them, call my attention immediately :D So, Im here...

I understand how you feel perfectly... My life changed last year dramatically... illness, depression... bad stuff... I took bad decisions and Im where Im now... So, I understand perfectly how you feel... I want my old life back... Uff.. I miss my old life too :(
So, what can I tell you ??? First, I can send you thousands of hugs... :hug:
Then, I guess I can suggest you cry everytime as needed... At least crying makes us produce endorphins... which can make us feel better :rolleyes: At least for a while huh ?

Also, I think it is awesome that you come here to vent :D I love to do that too... writing helps huh ?

Dont know what else can I say... Im not precisly good gicing advices as Im usually blue... :o But, try, at least try (for your posts I know you know how to do it very well actually) to live second, by second... Enjoy minute, by minute...
Past is that, past... We will always remember it, for sure, but, we have only our present... :hug::hug::hug::hug::hug:

Hopefully my post make sense... Im great at rambling, and, as english is not my mother language, sometimes it is hard for me to express...

Take care. Be happy. :grouphug:

Hi Erin,

yep its soooo hard, I don't often look back at my life before, or I end up too upset.

Then something happens and I have to ask my 69 year old Mum if she can take me to the doctor, because I don't have the strength or energy to drive.

I don't think there is a simple answer, but just to try and get through these times, and keep comming here for support!!!

You take care
Kate

Oh Erin, I know how you feel. I miss my old life too. It's been years and I still can't get used to the new me. I had so many dreams about how my children's lives would be and it didn't work out that way at all. I was 35 when my husband became ill with cancer and the next two years were filled with suffering until he died then three months later I gpt sick and seven and a half years later I'm still trying to get help. Here I am 44 and nothing went the way I thought it would.

If it's any comfort to you - and I know it may not be - I often wish I could be 35 again and get some of those years back. Sometimes I think my purpose in life is to comfort other people who can point to me and say, "at least I'm not her!!". :D

I hate not being able to work too. I understand how you miss that feeling of accomplishment and being able to think about something other than how cruddy you feel! It's so hard making plans again and again only to have them not work out.

One thing I did realize though is that my kids are just happy if I'm here with them. I spent so many years feeling terrible that I wasn't reading to them, taking them to the zoo, having their friends over all the time. But I did notice that when I was feeling better and off getting things done, they missed having me around all the time. Even if I was just lying on the couch. I try to remind myself that it would be hard on them if I were off at work too. Anyway, what I'm trying to say is that I'm sure that your kids just love you and just want to be around you, even if they're playing nearby while you're resting.

I know it's so frustrating. Especially since you can't predict from day to day and hour to hour how you'll feel. I think that's one of the worst aspects too. This stinks, no doubt about it. Try not to get discouraged and take good care of yourself, the way you would with your own child, when you're feeling low.

Ally

Oop! Sorry! I just looked at your pictures and realized you have a *big* boy. Me too! My eldest has just started to tower over me. Aren't they fun and sweet?

Me too!
 

Hi Erin!
First of all --- HAPPY BIRTHDAY! :Birthday:
YOU're just a baby, comparative speaking (I'm 52 :eek:) !

I guess we can just call this the wa wa thread! :( Thanks for starting one - I wasn't brave enough before, but I'll take advantage of this venting thing now too!

Every now and then we have to "mourn" our past, I think. Then we can get it out of our system and gather ourselves to deal with our new, uncertain lives.

I thought I was done with all this stuff when I hit my remission last year - boy I was just starting to plan for more exercising and FUN this year! Then everything hit the fan and is getting worse than before. My MG is in remission (kinda), but my other problem is cranking and still undx'd.

I was just told that I can't go to work for an as yet undetermined amount of time! I'm trying to do some from home, but there's not alot I can do for them without going in. I feel so bad for my boss and coworkers that have been so compassionate with me.:(

My hubby still hasn't completely recovered from his head injury last May, and I can see this relapse of mine is taking a toll on him too. He is so tired and his eyes are starting to have that look they had last year. I'm scared that the stress and extra physical requirements on him may be setting him back. That I feel guilty about, though I know it's not my fault.

Sometimes the way this "other" condition is going this time I truely wonder if I will make it through this one. Death is not the scariest thing to me, but I need to get some things in order before I do have to face that, and I don't really have the energy to get things in order yet. It's stuff that my husband wouldn't have a clue what to do with (our taxes, finances and such), without some detailed information from me. Maybe the fear of leaving him with a mess to deal with is what will get me through this though.:rolleyes:

My daughter just got here to work in our office for me, and she is visibly (she really isn't good at holding her tongue, either :D ) upset and in denial at me. She feels I'm just giving up this time, and stressing myself out worse with the information I've printed off about my possible secondary dx. I worry alot about her, even though she's 32. She's very emotionally dependent on me, and right now I'm having to be a little selfish. This is one of those things I really have no power over. I just hope she doesn't end up with any similar problems, but she does sometimes seam to show signs of autoimmune problems.

Erin, you're such a sweet person and so upbeat most of the time - no one can maintain that optimism all the time with this kind of change to your life- you need the time to cry, stomp, holler, cuss, whine, whatever.
We all know there are others worse off than we are, and sometimes that makes us feel guilty for getting "down", but the truth is, we have a right to mourn what once was every now and then. I'm trying now to remind myself how lucky I am in so many ways:

I got married young, had my children young so they're grown now, had my first grandchild with me a lot when I was very functional so she and I bonded very well and had lots and lots of fun!, I have a husband that has never not been here for me (many spouses run out when they're needed most), my children are loving and helpful, my inlaws, family and friends all understand my worries about my husband and offer their help for him, I live in a wonderful peaceful area, and I WILL HAVE A BETTER FUTURE than I am now to have fun - DARN IT - I WILL!!!!!:Head-Spin:

You will too - we all will.


I know, with your determination and personality, you will get to a better state with your MG and things will then be better. Patience is key because it does take time and you were SOOO bad by the time you got your dx that you have a farther distance to travel first than some.

I know the feeling
 

I know the feeling...I hate MG...hate it,hate it! I would much rather have my old life back too. Sometimes I wanna just start punchin a punchin bag!! :hug:

HI BlueMajo!
 

THank you so much You are so sweet!

I did have a great time @ my party - it was a blast........

You know, I was never a crier before, but now I just let it go......figure it helps and I would have to be a robot to not feel this way.......

One of the few GOOD things I can ay about MG is that is ihas made me much more appreciative of my good days, cuz' I never know when they are going to happen........I also tell EVERYONE that I love them every night before I go to sleep - I never realized how much I took for granted b/4..........

I would love to hear your story if you are interested in sharing it......

Again, thank you so much! It was so sweet of you!

I love neurotalk - I have met the most amazing people here!
Big hugs!
Erin

I'm thinking about getting one as well - you think they'd give us a discount? How are you? Are you OK?
Big hugs!
Erin

Hi Becky!
 

Thank you! I did have a great time @ my party - my hubby really is great! He takes such good care of me.............lots of nurses say that when the wife gets sick the spouse just can't handle it and runs out - not ours - we are truly blessed......

I think the hardest thing for me is the uncertainty. That scares me. I am a total type A personality - total overachiever - and now I can't even control my body, but I am here and I am able to enjoy things, so I will focus on that instead of the other......

What happened to your hubby? Is he OK?

I know what you mean about worrying about spouses - granted, Mike and I have only been married 8 years, but he is my biggest "baby" - and I mean that in the best way possible......this has really been hard on him too.

I know MG waxes and wanes and there will be days when I feel crappy, and I know it will get better! My pastor stopped by the other day and prayed with me - it felt great!

I will NEVER, EVER give up hope for remission! I will tell my neuro that if he needs a guinea pig - I am his woman.:D

Sometimes we NEED to be selfish. My sis is the same way. She resents my illness. There is nothing I can do for her now though. Right now I need to focus on getting better and moving on....

You are right about being so bad off before - I couldn;t even swallow a teaspoon full of liquid - I was that weak. I figure it took years to get this way, so it may take a little longer to feel really great again!

Thank you so much! You made me smile - it felt great!

Enough about me - how are YOU? Are you OK?

:hug:Erin:hug:

Hey Erin !!!

I hope today had been a good day for you :)

Now, it is me who is blue... :o Oh well... hehe The never ending story ! :p

Well, my story... Im not sure I should post it in this forum, as it will go so off topic LOL, but in summary, I can tell you that since last year, Im having trouble with my eyes (because I had a bad surgery :( ), I suffer with fibromyalgia, depression... plus, the guy I used to love is getting married... my dog died... I mean, everything came in a nasty combo at the same time ! :mad: :( So, as you can imagine, my life has changed dramatically... from taking zero medicine, to take more than 10 pills a day.... from being in love, to feel extremely lonely... from being enthusiastic to being blue 90 % of the time... :( from being an active girl, to being in bed and falling asleep most of the time..... All that stuff give me stress.... as it wasnt enough !!!

I have no clue why all this is happening to me... and... I dont know what I have to learn... and the most stressful part, I dont know if I will be able to live like this, with this feelings... :( and for how long....

So, that's why I understand when you feel you miss your old life... I miss mine like crazy and... uff... I keep thinking, and thinking about my past...

Oh gosh... I guess I rambled enough :o

Take care sweetie. I send you tons of hugs... and more hugs.... plus hugs... :D :hug::hug::hug::hug:

Well, I know one thing that is positive in this situation... I found NeuroTalk ! :)

Hubby's head injury.
 

Hi Erin,
I'm glad we could make you smile!

My honey was in my son's boat, parked in our "toy barn" getting some paperwork out for our son. He stepped out like he steps out of our boat - off the bow onto the part of the trailer that sticks up on the front - but son's boat isn't as stable as our apparently and Steve lost his footing.

That's all he really remembers, but we think his other foot got caught up some how in the bow of the boat. Anyway, he smacked his head on something on the way down (the edge of the boat, maybe) and fractured his skull in two places. We're so fortunate! People die from injuries like his all the time, or have permanent short term memory loss and a miriad of other problems. It was horrible when I saw him in the ER - there was blood coming out his ear, he couldn't hear anything at all and had short term memory loss and just kept asking me over and over what was going on, and saying he didn't remember. I mean it would be 2 minutes between the same question.

Luckily, my in-laws were staying at our house and found him in the barn shortly after it happened. They were here, though, for my son's wedding - it was just 4 DAYS after Steve's accident. That sure put everything in a tizzy, let me tell you! Believe it or not, this man of mine is so strong that although he couldn't stay for the reception, he made it to the wedding! Doesn't remember much, and it may have set him back some, but he was determined not to miss it. I love him SO MUCH.

Also luckily, I was doing really well myself last summer, so I was able to take care of him (for a change!). He's doing much better now. He had to get hearing aids, can't taste much, but he has his memory in tact, can think, walk, talk, and doesn't have the personality changes and aggression that can come with that type injury. I am concerned though that all this stress with my problems is causing problems for him. I can see it in his face and his hearing is backsliding even with the aids.

Well, now you have his story, too. Health, and life, are so fragile. My daughter says one good thing that came of Steve's accident is that before everyone was so focused on me that they took him for granted. She always thought he was invincible (he is a VERY STRONG man), and this showed her that she needs to show him more love and concern too.
Their relationship has improved considerably since then; and he told me once that he never realized that so many people "liked" him.

So, I guess there is good that comes of almost everything!

I'm better today, emotionally, except stressing over bills - I'm the major wage earner and since I've been ordered home this is going to be TOUGH!
We'll get through it though - as long as we have family and friends like we have, the "stuff" doesn't matter!

Take care, sweetie!:hug:

Awwww I know exactly how you feel Erin! Thats how I feel sometimes too. I think despite how strong we all are, mentally and emotionally, it just builds up. And we have to let all the frustration and sadness out. When I became sick I was a somewhat healthy 23 year old, with three boys and married. My husband and I divorced 2 years ago. I think my illness played a major part.

So I totally miss my old life! I constantly think I am a poor excuse for a mom anymore. It makes me so upset to think about all that, that I often avoid thinking about it. My mom has recently started having a lot of medical issues. So I am trying not to rely on her so much. She lives with my boyfriend, me and my kids. Recently things have just been especially difficult. And I guess we pretty much all realize there are people worse off than us.

Oh and a big HAPPY BIRTHDAY!!!!


Hope you feel better soon!

Happy belated birthday, Erin! I'm sorry it was a tough day for you.

I think the hardest part with any illness is acceptance because you can never fully get rid of the physical problem and your mind will always want to do what you used to. There are days when I miss things like road trips so much I can hardly stand it.

For me, I now love days that are so routine that they are almost boring. Why? Because it means nothing new health-wise is getting in my way. There's been a lot of that for me in the past 10 years. I just enjoy the simple pleasures like watching new birds come to the feeders in the spring. And hobbies.

I think the most important things I do every day - and this may sound selfish - are to pamper myself as much as possible. Make myself feel good. Whether it's music or painting my toe nails or watching a good movie.

You're so young . . . just enjoy every single day as much as you can. And when that doesn't work, have a room where you can throw pillows and scream and rant and rave, while everyone else is outside! ;)

Annie

Hi Annie!
 

Hi Momma3love!
 

It does build up! I think I am in the depression stage right now.....I always feel like I am letting someone down - my hubby and son especially - and that is just no way to live......so I have to let it go. Devon is 17, so he can make his own dinner occasionally.......the house can get messy......it really isn't that big of a deal......

I am sorry to hear your mom ishaving health issues. It is so hard to deal with a sick parent and have to whole role reversal thing.........just remember to make time for YOU! You DESERVE it!

Our families will just have to "lump" it for a while. It will get better!:D

My thoughts and prayers are with you, honey. It will get better!

Big, big hugs!
Erin

Hi Becky!
 

Wow! Your poor hubby! What an incredible man! I can't think of anyone else that would do that! He sounds AMAZING!

"For better or worse" really mean something - that is rare nowadays - sadly.....

I am going up to Dallas to see my grandparent's this weekend - get my dose of grandma! She is such a strong woman...they have been married 60+ years and are still best friends - Mike and I aspire to be just like them.

I am so glad I found this site. It has been a real life saver. Unless you actually have MG (or a chronic illness) you just don't understand.....

Can't wait to hear from you!
Big, big hugs!
Erin:D

HI BlueMajo!
 

Today was much better! 4 days on the sofa really made me feel better! LOL! I am going to see my grandparents this weekend and can't wait - seeing my grandma always makes me feel so much better......

I am sorry you are going through so much! There are days when I look up and ask God "Why me?", but they are fewer and further between now.....

I asked my doc to up my antidepressants for now and he agreed - yay! I am all for getting through things, but I knew I needed a little help to get through this whole grieving process.....

Just remember, if you ever need to talk I am HERE - you can pm me or send me a message @ erinhermes@hotmail.com.....

Hang in there sweetie - it will get better!

Big hugs!
Erin

Erin, When I first got sick, I thought about what I had to learn. After living with it for awhile, I started to think that it was others that had the learning to do! ;) So don't let the guilt creep in. Your family will continue to love you in spite of this horrid illness. Do you love them for what they can do FOR you? I didn't think so.

Annie

Yessss ! So glad to read you are better !!! :)
Enjoy your granparents !!!! I dont have any left :( I miss them tons.... Have a lovely weekend sweetie !!! :hug:

Thank you so much for your message dear. You are too sweet :hug: :hug: :hug:

Talk to you soon !!!!
Love,
Majo.

Well as we are all talking about our past lives, I think I might just have a bit of a rant, and get a few things off my chest(and believe me I would only do this to me dear close friends at neuro talk!!):D

Its comming up to a year since I sold my darling horse, Pardo,:( then about a week later my darling dog Ned went to the big sky paddock up above, he had cancer:(:(:(:(. Because of where I live, I can't have another dog,:mad: I live where I live because I can't work, and this is government housing!!!!! Ahhhhhhh I hate that I use to get up at 5am work all day in the blazing sun, get home, chop wood, go for a walk with the dog, then cook dinner, and fall into bed happy, and now I can't.
Iam thankful for so many other things, but this is a rant,and thanks for listening:hug:
Kate

Sad to hear
 

Hi Dottie,

Naah can't have a cat either. But the good thing is my sister and brother have two dogs, a rhodesian ridgeback and a kelpie. I go out and babysit and get my dog fix that way. They are gorgeous girls and we get on well. Iam about to go out and babysit for two weeks, the two dogs a horse and a sheep, can't wait!!