I think I'm falling apart

[lusciousleaves]

I can't even put it into words except to say this perpetual limbo, the lack of validation, the lack of support from others because of the lack of validation, and now my husband thinks I'm a user expecting him to do all of the work - all of the work meaning asking him to move 2 pieces of furniture a few feet and making sure our son got his meds before bed while he was watching a tv show.

I hate my life, I hate my body, and I'd give anything to give every second of what's left of this lonely, boring, abusive hell of a life to my mother who fights with every ounce of strength to get a few more minutes. She can have it. She's earned it. I don't want it anymore.

[SaraL]

I completely can relate to what you are going thru! It is so hard to deal with our sx and it makes it worse when those closest to us do not understand what we are going thru...or even worse do not believe our sx are real. That can make us feel down and alone..but you are not alone...you have all of here!!!!

How long have you been dealing with your sx? I have been dealing with this for just over a year. I had a dr suggest a brain mri b/c of possible ms, but I did not have it done because my husband thought that was a waste of money.

Now, I have had to chg jobs (and now self insured) so getting the mri is no longer an option. I could kick myself for not listening to what I felt was best for me. I know now that my husband was just scared of a ms dx and didnt want it to be true.

So, now I do not mention any of my sx to anyone. Everyone always trys to discredit what you are going thru or start asking you every day if you have a dx yet. When you tell them you don't, they say it's just stress...ugh!

I know it helps me come on here and be able to talk freely about what I'm going thru....hopefully that helps you too

[CaroleL]

Hang in there lucious!

We know how MS changes even from day to day. There are better days ahead!

Call your local mental health hotline. They'll talk to you and make you feel better. Maybe your MS society chapter can offer you some health.

I'm also sick of all of this MS, sick of my body, my condition, but I love who I am as a person. You are a beautiful person! Hang on to that thought! Try to keep your mind on the good things that are around you.

You are very much loved here, and WE CARE!

A big BEAR HUG!!! Hang in there! You're not alone in this!

[MinnieGirl]

I Understand

Dear Luscousleaves,

While I may not have been at this limbo thing as long as you have, your post touched me as I do get it. I am not the same person I was. I feel myself slipping away.

I overall have a supportive family, yet after every appointment I get asked what they said and my answer is always the same. They don't know. I have just enough abnormalities to be abnormal, if you wil , but not enough for any sort of diagnosis. So here I am, barely able to make it through each day of work and my right side is a hot mess. I, too, have very little left for my family.

I wish I had the right words to comfort you. For me, simply having someone say that they understand helps.

Gentle virtual hugs,
Minnie

[dalechilders51]

lusiousleaves, your in a tough place and I wish I could tell you what to do get out. I visit the same place sometimes so if you find the answer please let me know. I think reaching out here helps and sharing you feelings helps. I hope you get by this patch soon. Please take care Dale

[getoutside]

Oh, sweetheart. I hardly know what to say. I was in the same boat six years ago and no one knew what to say to me either. So, I went through much of it alone. My hubby didn't understand and NO ONE really does unless they are experiencing it for themselves.

I am so sorry for what you are going through, but, I am glad you are here. WE know what you are going through. But, please hang in there. The days of not knowing are some of the hardest. I pray you get a diagnosis soon. Best wishes to you!

[HellsBells1]

Hang in there!

Hi LuciousLeaves;

It sounds like you are have a very hard time, and struggling to get the support you need. I completely understand. I, too, am in LimboLand with no official dx. However, that doesn't mean that I am not having real sx that affect my life.

My DH and I own/run a restaurant which is very busy. I have not been able to work for 3-1/2 months - due to fatigue, myoclonic jerking triggered by a hyper startle reflex (which is not good in a loud restaurant), and very poor walking balance. I simply cannot perform the responsibilities of my job at our restaurant.

DH and I were talking last night, and he said that he thinks I just don't come to work because I'm "tired" while he's busting his butt off for 95 hours/week. No matter how I try to explain that this fatigue is not just "tired" and that there are many other reasons why I can't work, he doesn't really believe me. I know he's struggling and tired too. In fact, exhausted. However, he is the Chef, and without him, the restaurant would not be. I miss him, and would not trade working alongside him for sitting at home barely able to move off the couch.

I am also extremely sorry your mother is struggling to live. But I have to tell you, as much as she deserves a long, happy life... SO DO YOU! You deserve to live. You deserve to be loved and supported. Please ask your DH to be patient, and help you get to a point of dx, so that you all know what you are dealing with, and you can plan together how you are going to make it work. In the mean time, he has to accept what you say when you tell him how you are feeling physically, and he should step up and help out.

I hope you find answers soon, and hope your hubby and son can help in small ways that make your life easier.

Hang in there!

[swingingwillow]

Are you still trying to be Superwoman?

OK I;m going to make a few suggestions and if something sounds good please feel free to listen and if something doesn't then please disregard.

I'm taking a break as I was starting to feel the way that you do right now. We all have limits and we all need to know when we need a break, don't you think?

Is there someone who can empathise with you? A doctor, a friend, or someone here?

Have you ever considered counselling. I have had therapy for my body stuff and it works immensely. Also, have you ever considered mindfulness meditation? There are classes popping up everywhere.

Is there anything that you can do that's nice for yourself that doesn't revolve around the home, work, or your body?
A hobby of some sort? Do you like to do any crafts? How about journalling? Or painting or drawing?

If your husband doesn't move the two pieces of furniture are you able to let that go for a bit?

Is your son able to give himself his own meds if you leave them out for him with a drink and a snack? I'm not sure of his age or abilities when I ask this question. Or maybe when it's bedtime he can come visit you in your room where you can give him his meds from there?

I'm taking a break in regards to many things whether or not anyone agrees or disagrees with me. And I know when I need a break. It sounds like you need one hun. How about a cup of tea at the table maybe by a window?

Vitual <<<Hugs>>>

[iteachfirst]

I'm so sorry and I think you put it into words well. I'm not ready to give up, but I do understand. I have just quit talking about it Hangexcept for on this forum. It is a waste of breath. People don't get it. We have no overt signs (maybe a few, but you know what I mean),so we must be overreacting. Today I felt awful but I just don't mention it. It stinks. I understand about wanting validation. We are not hoping for a terrible disease but could someone just please take it seriously and find out what is going on? The lack of knowing, lack of understanding, lack of caring(as it seems) is the hardest part. Yes, we have anxiety but wouldn't anyone in our shoes! I think the majority of the anxiety is caused by simply not having an answer or support. I have no great words of wisdom but I can tell you that I GET IT! Hang in there!

[Sara Angela]

I'm sorry you are having a rough time!! I'm sure it is frustrating to not have a diagnosis!

I had a pity party for myself this afternoon as I tried to fix dinner with my legs not wanting to work. I finally got something thrown together in the crock pot. I hope it is edible.

I pray things will get better!

Sara

[lusciousleaves]

Thank you all for the kind words and support. It's good to know others understand. I do wish it could be found somewhere other than cyberspace. He was understanding for awhile, and helpful. Then I started getting better and doing most of the work around here again, then had a big setback in the fall that's just continued to get worse from continual infections. I'm just tired of fighting for everything, especially understanding and respect.

I don't think we can fix this marriage and it finally dawned on me that what I'm dealing with here is a power/control/abuse cycle. I've been sick to my stomach ever since. I just want out. Now he wants marriage counseling and I just want out.

[MinnieGirl]

I Am So Sorry, And I Understand

Here it is, Valentines Day, and I feel like absolute crap and feel so guilty. I just don't have it in me to be romantic.

I am so sorry for what you're going through. It absolutely stinks. I have other words in mind but they aren't appropriate and would be censored, haha ;-)

I want you to know I am thinking of you and wish you the best.

Hugs, Minnie

[CaroleL]

I'm thinking of you too lusciousleaves,

What you're going through is not easy. Having MS on top of family problems is horrendous. I feel for you.

One thing I've learned well in my life is to not make any decisions when I'm emotional. I usually regret it! Please take you time in making a decision of such magnitude.

At least wait until you can think clearly and aren't so frustrated. Then, whatever decision you make, if it comes from your heart, will be the right decision for you.

Take one thing at a time. Write a list if you need to. Handling too many things at once seems insurmountable. Health first! Take care of yourself, that's the most important thing right now.

We are here to support you!!!

[lusciousleaves]

You're right. I need to take it slow. I had a doc appt. Monday for another prob, but couldn't stop crying while there. After explaining, the doc suggested I need to have him leave for awhile and I didn't ask him to. I should have. I'd be much farther along getting past this if I had.

[Dog Mom]

Dear LL,

Wow, I read you loud and clear. It's really hard to be left without the steam and strength and dignity to do all I feel I should be able to do. It sucks to quietly feel "damaged", it's humiliating in itself, without a spouse who acts as though you aren't pulling your weight, even more humiliation isn't helpful. Mine was quite spoiled, never cooked, cleaned, mowed, shoveled snow, laundry, nothing. Sat on the sofa watching TV and snacking all night while I ran my butt off 'til midnight with the chores after putting in 50 at an office job.

After that I worked 80 hours a week self employed, for 8 years while he worked 30, and sat and waited for me to get his food and clean up his mess. At that point I laid down the law, he started doing the outside chores plus loading the dishwasher at night, at least. After I got really sick he helped vacuum some, eventually we got on a more even keel.

I had to explain how I felt, and had to learn to admit it when I didn't think I could do things, as afraid as I was to reveal myself as "defective". My own thought, not his, but it's really scary to realize you aren't like you used to be, and may never be again. Had to realize that he couldn't truly understand how I felt, and had to be told, but just "told" like I would a friend, and not crabbed at, like I wanted too, out of frustration.

Most of the time anger is really hurt feelings, not anger. If you can figure out how to express that truthfully without coming off as pissed, even if you are :-), maybe you can get some cooperation. (?) Once I realized too, that holding in being pissed was making me sicker, and stressed out, I've started to learn to catch myself going there, and pull out. Sometimes it's as easy as playing devil's advocate with myself, and trying to see the opposite side of the coin, or just plain refusing to have a crappy day, even though I am right, and he is wrong. Haha. Hang in there!

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **