Ready to give up

F

flutterbee

Guest
I think that about sums it up. I don't even know what I want to say. My head is still so muddled almost 36 hours later. I'm feel like I'm in a stupor. Like I'm moving in slow motion. Everything seems very surreal.

I keep having the thought that it doesn't matter what's wrong with me. I just want to stop. I'll just live with it. I just want to be done. I can't do this anymore. But that really doesn't change anything because I will still be living with it. I just won't be any closer to an answer. But it doesn't seem like I'm getting answers. So I can't find a solution.

I know this doesn't make any sense because it doesn't make any sense to me.

I just want it to stop. My body has failed me. My brain is muddled. And I don't know what to do. I want to call my mom and ask her to come take care of me like I'm a little girl. Of course, I wouldn't do that. I just feel so lost.

:crying:
 

Hound dog

Nana's are Beautiful
Heather

I'm gonna wrap my arms around you and give you several very needed ((((hugs)))).

been there done that twice in my life. First time was with the kidneys. I was doing an 18 month long stint of in and out of the hospital. Docs were doing their best, but didn't know how to treat a disease I shouldn't have had at 22 yrs of age. So we were treating the symptoms.

I remember holding my urologist and sobbing into his chest once. (he was a great man and doctor) And begging him to just remove them so I could be at home with easy child and Travis who were babies.

Second time was after being run over by the truck. It was a while before we discovered the fractured skull. All I knew was that from the moment I was hit it was like I was walking thru someone else's dream. Real didn't seem real anymore. I couldn't think or reason. (and yes husband used this to is advantage) Heck, I couldn't remember something that had happened 5 mins before! Reading was overwhelming even.

I got thru both times. I just kept pushing myself forward. The kidneys seemed to go into a kind of remission state where they weren't near as bad for a few years. And with the skull fracture...it took 3 yrs but my brain healed.

I think it would be a enormous relief to you if they could just figure out for certain What exactly it is your dealing with. With a real solid diagnosis they could come up with a solid treatment plan.

Maybe you ought to write into that show on Discovery Health with the mysterious illnesses? I can't recall it's name. But they certainly get some unusual stuff on there.

((((hugs))))
 
F

flutterbee

Guest
Lisa -

That's what it is. You told the doctor to just take your kidneys out. That's kind of how I feel. Like if I just refuse to acknowledge it, it will go away. And that will be that.

I'm sitting here staring at the computer looking for some kind of comfort and something I can't even define. My body wants to cry, but I don't have the energy. Yet, I feel very detached at the same time. I think I'm dissociating a little bit. Thank you prednisone. And yet, I don't even care. Whatever will be will be.
 

mrscatinthehat

Seussical
So sorry you are going through this. Many hugs. I would volunteer to come help take care of you (at least I know you would appreciate the effort) but alas can not.

Hugs
Beth
 

Tiapet

Old Hand
{hugs} I know this feeling well. I'm sorry there isn't any real answers. I can only tell you what I've been doing (which isn't working the greatest). I have days on end I go through it where I just can't go on. Thankfully I don't get suicidal, although I wish at times I could be. I try to find ways to reach out to people and make human contact or immerse myself in some sort of project to take my mind off it if I can (usually online - like planning a vacation I know I will never go on). I know that the days that difficult child's act up and life's problems (which can seem like days on end too) kick our butts the hardest makes it even worse.

Here is just one more thought for you. I have created a soft, soothing space (whether it's on my couch, chair or in my bed) of a special blanket (different then the blanket you'd use on your bed) that is ultra soft, a heating pad and a few other items that are portable. I take them with me on those days that are hardest. My family has come to learn that you do not mess with these items, EVER! It's like creating your own little bubble world to get lost in sort of.

I hope something small helps.
 

timer lady

Queen of Hearts
Heather,

I'm sorry, so very sorry that your body is letting you down; that your feeling so very sad. Believe me, I understand.......

I told my GP this past week, that I'll probably come home from Mayo Clinic (going there with 2 solid diagnosis's & looking for the right treatment plan) & come home with "the world's longest & most stubborn sinus infection". :scared::capitulate::rofl:

I determined a long time ago, when my seizures were so very uncontrolled that I had to take back my body. While I couldn't control the physical happenings, I could control my reactions to what was going on. Heather, in the long run, that is how I developed my sense of humor, my patience & my love for golf. (You have to talk to the doctor's about something different every now & then - impress 'em with your last game & they are willing to put more effort into your treatment. I swear it's true!!!! :doctor::rofl:

And saying that now, isn't helping. I know that. There have been times over the last 9 months where I just wanted to quit. I've never felt so ill - just like you've been feeling.

In the meantime, when I've been able to read I've been reading the book "Living Well with A Chronic Illness". Has a great deal of day to day, common sense information for making a "game plan", if you will, for life with a chronic condition. So you don't feel so stuck - so blind sided each day.

Living life not knowing what the heck your body is doing is mind numbing at best. Accepting the new limitations this illness has placed on your body, on your soul is heart breaking some days - freeing others. Learning new ways to work around those limitations can be challenging (still can't get up or down stairs very well & haven't found an affordable answer yet).

I guess, after all this rambling, I just want you to know I understand. That I'm sending very gentle (((hugs))) your way this morning.
 
N

Nomad

Guest
Hi Heather,
I'm so very sorry. I really like what Linda posted and it resonated with me in a major way. I even think I read the book she sited. I do know that I had to fire my neurologist who was treating me for migraine pain because the bottom line was he was uncaring SOB and in my humble opinion uncaring doctors make mistakes. Later, I developed high blood pressure and went to one of the best cardiologists in town. This is the doctor that the doctors go to see. He put me on a high blood pressure medication that worsened my migraines. When I complained, he treated me like dirt.

I had to get my new neuro to treat me for high blood pressure, because he understood that I couldn't sacrifice being in horrible daily pain for perfect blood pressure and that we might have to experiment with many medications to find something that worked for ME. I also have lupus and possible Fibro and tend to let this same doctor (the neuro) treat me, simply because I find that someone who really cares does me best. What I'm saying, is don't hesitate to doctor shop and/or get second opinions. Be assertive. AND give a lot of points for a doctor that really cares about your well being.

Also...be proactive in every way that you can. Eat good healthy foods. Take vitamins. Get to bed on time. Avoid stress when you can. (Are you taking a B50...so good for stress!)

I believe Tiapet mentioned resting on a special couch orwith a blanket. I have one of those blankets that look like they are made of mink. Sometimes when I'm very tired or overly stressed, I'll lay on the couch with that and it is dreamy. We all need a place for quiet relaxation...esp. if there is a difficult child in the picture!

Even if it is a struggle...count your blessings. Keep your sense of humor. Your body certainly is having a rough time of it right now, but in time it will respond in a positive way.

Wishing you healing (Hugs).
 

meowbunny

New Member
Chronic pain stinks! Well, it does more than that but anything else would be censored. It really does **** the life right out of you. Not knowing exactly what is wrong or how to treat it has got to make it 10 times worse.

The medications for chronic pain ain't no picnic, either. You're doped up, living in this fog or in pain. Nothing is quite right with the world.

I wish I could wave a magic wand and make it all go away. You've been given some good advice from Linda, et al. All I can offer is my friendship and understanding, many hugs, cyber arms and chats.

(((((((((((((((((HEATHER)))))))))))))))))
 
M

ML

Guest
Please don't give up. You WILL come through this. This is going to sound so weak and I apologizue if it sounds like i am minimizing the intensity of your situation. This isn't intended at all to be any kind of treatment. But perhaps an augmentation. Have you tried visualization? Kind of like going into a state of meditation and you focus on all parts of your body that are hurting. Visualzing white healing light. Project calm, loving energy onto them. Keep at the medical community until you find some kind of relief.

I like the place on the couch. Create a place to visualize. A comfy blanket and pillow. Maybe even get a heating pad and soak borage oil into different parts of your body, or just your abdoment to start. I have heard it has healing properties.

Again, I throw this stuff out more as a way to provide some relief while you find the right answers.

In the meantime, know you are loved and treasured here. You are a very special part of us. You are the GRACE.

Love you,

ML
 
Oh honey.

My maternal instincts are kicking into overdrive. I feel like I want to just hold you and rock you and make it all better. It hurts me to my core that there is nothing I can do to help you. I am praying so hard for answers.

So, so sorry for your pain.
 

TerryJ2

Well-Known Member
Oh, Heather, I am so sorry. {{{{{Huggggggsssss}}}}

I am so glad there are others here who understand and have been there done that.
I love the book recommendation.
I wish I could do more, except to let you know that there are people out there like us, who do care about you.
I wish you peace and contentment.
 
F

flutterbee

Guest
Thank you everyone. :flowers:

I hit my breaking point last night when the muscle that wraps around my wrist and snakes up my arm became visibly and almost grotesquely swollen and my arm and hand was so weak it was all I could do to put on chapstick. What did I do to cause this? I combed out my hair after my shower.

With the mental cloudiness I was still experiencing, that was my breaking point.

My mom came up today and I have to say I am not proud of myself today. She came up to help me with a few things and for company, I thought, but she then set out to clean my house. It was very nice of her and I do appreciate it, but it was just another reminder of what I cannot do and I became very agitated and angry. I couldn't seem to help myself. I felt toxic. I finally exploded and then broke down into great, heaving sobs that racked my body. And my mom was busy being understanding when she should have been ticked off at me for the way I'd been acting. Sigh. No daughter of the year award here.

I can't deal with the fogginess. And I'm not on any drugs that would cause that. The strongest painkiller I'm on is naproxen. And I can't deal with the unknowns. I was a mother, with a job and somewhat of a social life and now I feel like I'm nothing. I have nothing to offer. I don't know from one day to the next what my body is going to do and I don't know how to live like that.

I truly appreciate all of your support. I'm a mess, but I'll get through this one way or another.

(((hugs)))
 

Steely

Active Member
Heather,
I feel so small, since I have nothing I can even think of to say that might make this better.
But please know that you are an amazing person, a wonderful mom, and that you have a soul built of concrete.
There is nothing that will, in reality, take you down. It might feel that way, but it is only akin to a tornado blowing on a pillar. You are a pillar - this will not take you down. You are fighter, a warrior, a winner.

You stay strong, and believe, know, there is a cure, a solution, a remedy.

PS. My mom would have done the exact same thing!!! But you know what, cleaning, I have decided, is a mom's way of fixing things. Do not take it personally. She is just trying to "fix" the tangible things in your life since she cannot fix the other problems.
 

tiredmommy

Well-Known Member
Heather,
Call your mom, tell her what you've written here and ask her to come to a regular appointment with you. I know she will help you explain to the doctor just how far gone you feel. If it's any consolation, I've felt muddled when I'm in the midst of something as simple as a bad episode as IBS, my body just isn't taking in what it needs for my mind to function clearly when tiredness and pain are factored in. {{{Hugs}}}
 

susiestar

Roll With It
Heather,

I am so sorry. I am where you are right now. I jsut want to hug you and wrap you in my supersoft blankie and snuggle up and watch a bunch of movies with you. Just so you don't feel so alone.

Health issues really really stink.

I think your mom is just glad she can be there for you. I know that if I cut my mom out of the stuff she gets mad - tells me it is her RIGHT as my MOTHER to be there, even if I am angry and yelling, or crying, or unable to talk or move.

Don't feel bad about letting go with your mom. You know she will always love you and that she is a safe person to let go with. Kinda like our kids know that with us, huh?

Anyway, sending gentle hugs, a heating pad, and a cuddle.

Susie
 

Shari

IsItFridayYet?
Heather, sending hugs. I'm so sorry you're having to deal with this.

I think Steely's probably right...mom can't fix you so she'll give you less to worry about. My mom's doing that lately for me. Took a while, but I'm getting over the "she shouldn't have to" crud and enjoying that she is able and willing and wants to help and that's how she can. And it does.

Many, many hugs.
 
F

flutterbee

Guest
Thank you each and every one of you. You don't know how much comfort this brings to me.

I'm going to order that book, Linda, first thing tomorrow. And I love the idea of my place with a blanket, heating pad, etc. I used to have the perfect chair for that, but gave it away when I didn't have room for it in my last house. I will have to create a place like that here. I used to do visualization, but haven't done that in a while. If nothing else, it's relaxing which is definitely something I could use. My mom has gone to the cardiologist and the rheumatologist with me, but I'm going to ask her to go with me to my GP once, as well.

I think a slumber party with our blankets and a bunch of movies is definitely in order.

I also need to get away from this. I need to feel human again. Every waking moment is spent thinking about this or researching that, going to this doctor or that doctor. I've learned a lot, which is good. But, I just can't do it anymore. I need to let it go. It doesn't mean I'm going to stop looking for answers. It doesn't mean I'm not going to advocate for my health and keep pushing for testing, etc. I'm just not going to live and breathe it anymore. I can't. Either they're going to figure it out or they're not. And there's really not a damn thing I can do about it. Coming to that realization is actually freeing. I have to depend on others to do their job. *gasp...I can't breathe!* :tongue: I've never been very good at depending on others. But I will learn.

I'm usually so in control of my life and this has thrown me for such a loop where I have so little control over anything. So my reaction has been to hang on tighter to some semblance of control, when what I really need to do is let go a little. Does that make sense?

I had this timeline in my head of how long it would take to get answers, get a treatment plan and get back to my life. And, surprise, surprise, it's not working out like I planned. And I'm having to come to terms with that and also coming to terms with the fact that I may never get back to my life as I knew it. I may very well end up with something completely different. I need to adjust to that instead of fighting this every step of the way. Because no matter what, I don't want to lose the person that I am just because my body is defective and apparently out of warranty. I am a pillar, you see. ;) I don't want to give up on life and the little things. I want to take my blanket and sit in the grass and watch the birds and the squirrels and be thankful that I can do that even if it's the only thing I can do.

Thank you, ladies, for being here and for lifting me and wrapping me in your arms when I was ready to give up. I'm truly touched by each of you.
 

timer lady

Queen of Hearts
Heather,

I agree - let go. When my seizures were at their worst there wasn't one thing I could do to control when/if the next one was going to hit. I can't control what is happening now. I CAN control my reaction to it.

by the way, I gave up researching Susac Syndrome quite a while ago. I figured as long as the professionals had a grasp on it, husband did his research that I didn't need to know more. I know enough to know the protocol for diagnosis & treatment. Doesn't mean sometime in the future I won't be back at research; just don't need that info right now.

Find your safe snug place & use it. Use any & all help you can get - be it help from family & friends, mobility aids, tech devices, whatever. Seriously, this is the first step to acceptance.

(((hugs)))) to you this morning. You sound like you're in a better place - I'm glad.
 
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