Feeling bad about feeling ill and trying to explain it to family

[Lyndsey]

Hi everyone,

I am feeling overwhelmed and frustrated. I find myself feeling bad for feeling so crappy all the time and don't even want to share it with my husband anymore. Feelings of guilt overwhelm me, because I feel like I am bringing everyone around me down due to my condition. I try to explain to my husband how bad the pain and symptoms are for me day to day, and sometimes find myself wondering if he even grasps the degree of pain, or if he even believes me. I try to do my best to hide the feelings but it is so difficult.

I have very few days when I feel ok, and even then the exhaustion never ever goes away. My anxiety is so bad that I cant fall asleep at night, my heart pounds to a point I feel like I am going to have a heart attack. I recently started ativan and don't know how I feel about it.

I am sick and tired of people telling me to be positive. How does a person feel positive when they feel like this. I am constantly stressed about being on disability and being off work I just wish I could get to a place where I didn't worry so much. I have worked in a very stressful career for the past 8 years. Worked my butt off to get to where I am and now feel like I can't go back. The stress of the job just aggravates my symptoms severely. I wonder is a stressful career that pays well really worth my health deteriorating to this extent. Even being on disability now, my symptoms have not improved and have only become worse I think. My career pays well and I am scared to death of what my future holds and what other options I have.

So many people message me on a daily basis asking to go for coffee, and as nice as that is I just don't have the energy or want to leave the house at times.I find myself making excuses and then feel bad about it. I never thought at my age that this would be happening.

I have recently gone back to church and turned to god. I hope that this helps. I know that people tell me to surrender to god, and that what will be will be. But being a person who has always been in control of my life, I now feel like I am stuck in a hole that I cannot climb out of..........

Thoughts and prayers with everyone tonight

 

[Loftpat]

Life is challenging when your family doesn't truly understand. That's why I'm glad I found this forum. I also struggled with working as I was the primary breadwinner, so I understand your anxiety. I wish you well. Hugs.

 

[Lyndsey]

Thanks so much. I wish you well also. Thanks for your response.

Lyndsey

 

[Forgetmenot]

I think you need to come to terms with this yourself first.you really need to make peace with yourself first. If u feel church will help with that go. Go for coffee even if it's once a week. Get out. The more u sit around the worse u will feel about yourself.stop beating yourself up.If u hurt let it show ,u don't need to be dieing on the floor but ok let me tell u something. At night I have problems getting up to bed. So I find it a lot easier if I go on hands and feet.i crawl up. Now I don't do it for effect .i do it as I bloody hurt.and my OH has asked me what I'm doing and I've said I hurt I can't get up any other way. He don't do anything but he understand I hurt and I'm going to bed.
If u need help getting out the bath say so. If u need help ask. Your not saying I won't do it ,your saying help me do it.
The more help u get the more likely u are to be able to go to work.but I really believe you need to come to terms with yourself above all xxxx

 

[moe1959]

Wow! Have you been a bug on my wall?
I can relate! I'm really glad you are going g to church. It's good to be plugged into something positive.
My whole family doesn't want to understand what this mysterious disease is.Like you they are angry. I'm a Christian and I have always prayed, false eve dance appearing real.
FEAR.
That the symptoms are there, but with God's help He can heal me. One thing a Pastor told me years ago,"Don't ever claim belonging to sickness". For instance, Don't ever SAY MY FIBRO" Has really kicked in. Replace it with( the fibro). Because you know what? When the Dr.s say there's nothing they can do, that's when our Lord can do a work. Have I had bad days, you bet! Does my Family think it's all in my head? Of course, who's going to clean the house do the dishes, pay the bills, take the car in for service, receive mail, pay bills?
A little bit of me wants to be really angry and scream at every one! Would it make them feel better if I had cancer? Or some disease they can see?
To be honest I don't know.
I had a friend who had breast cancer, and her husband left her. Grrrrr.
Guess I opened a can of worms.
Keep on keeping on.
God is still in the business of healing. Meanwhile I'll pray. I WISH THERE WERE A PRAYER THREAD
here.

 

[Cindi D]

I must have been really, really bad in my previous life, cause I sure am paying for it with this life. I know how you feel, and I don't think anyone will ever understand this disease unless they have it. Noone in my family understands, and the people I work with are clueless, just worked 12 days in a row without a day off, because I have to. I don't have a choice. I have to have a place to live and food. It's just the way it is. I don't have anyone. Except my elderly parents and they are as sick as I am. NO One understands, the people I work with (health care) think my doctor is a quack and she is the ONLY doctor that has ever tried to help me seriously.

 

[JKerner59]

Lyndsey, I get the frustration! I get everything you said...if it wasn't for this site, I'd go bonkers for sure...hugs!

 

[Ruralchick]

I'm glad you have turned to God. We may not be healed but He sure will teach us through this! I finally came to peace with this fibro fight when I repented of my resistance-my rebellion toward Christ. Although I prayed all along that He had the right to do with me anything He thought best; for He knows the final ends and is only for my best; in my heart I was rebelling, even revolting at His plan. Then when I repented I became at peace with the fibro and was no longer mad at God for allowing/causing this in my life.

I do not know how He will work this all out but I trust, really trust ,that He is only going to use things in my life that are for my best, and that I suffer much less than He did for me.

Oh I'm still weak and shaky at times, still suffer, still am in pain, still would prefer to be healed, but I use every avenue I can find out about to live better, healthier and stronger.

And now I can say-I feel your pain and know the ONE who can help.

 

[Lyndsey]

Thanks everyone again for your replies I am sorry to hear that others are struggling in similar ways. I do believe that turning to god gives us hope. I am going to keep working at that as much as I can. I am truly trying to accept that things in life are out of our hands, and that we can make plans in our lives but god is the one walking the path. It surely does not take away the frustrations, and anger that comes from time to time, but it helps.

Thoughts and prayers with everyone tonight xo

 

[Lyndsey]

Hi Moe,

I think we are all bugs on each others walls to some extent So many similar feelings and frustrations. I really wish that people understood the disease more and I am sorry that your family is not being supportive That does not help at all does it. Sometimes I find myself questioning the disease of Fibro as well because of all this. Especially on the very rare occasion when I have a "good day" when I can function without holding my head in my hands. I believe we will all get through this some way or another. And I totally agree with you and wish that there was a prayer thread on here as well. I think it would be very helpful and comforting. I recently had coffee with the pastor from the church I started going to and he is very supportive and helpful. I appreciate him and feel that god brought him into my life in some way to see me through my struggles. I also feel that is how this forum came into my life when I so desperately was searching for answers online one late night!

Lyndsey xo

 

[moe1959]

Reading Your Post tonight encouraged me. THANKS, UNFORTUNATLY IS NICE TO KNOW WE ARE NOT ALONE. SOMETHING I FEEL GUILTY BECAUSE I DONT HAVE SOME OF THE PAIN AS OTHERS.
7 PM AND IN BED, IS THIS NORMAL. Nope but u know what? Whatever works, hopefully tomorrow brings a good day.
God blesses messes��

 

[Lyndsey]

Hi Moe,

Don't ever feel guilty about that ! We all have pain some different some the same but it is still difficult no matter what you are dealing with. Hope you are feeling ok tonight and I love that quote "God blesses messes"

Lynds xo

 

[PythonPlay3]

Did I ever need to find this post today! I just got back from "vacation" and to say I blew up at my husband a week ago, is the understatement of the year! We go places and he wants to walk all over, for hours at a time, and cannot get it through his head that I CAN'T DO THAT! He complains if I ask if we can take the city bus, he complains if I ask to use a cab, he complains that I am sleeping "our" holiday away, I have no idea how he thinks that my health issues are going to miraculously disappear just because we are on vacation, we have been together for 6 years now and I still don't think he believes that there is anything wrong. Ok so the fibro is hard to "show" but I have severe arthritis in my back, hips, knees, ankles, shoulders and guess what- you can see it in the x-rays clear as day! But do you think he comprehends the pain included with that- no, now add fibro to that and you have me. I let out 6 years of anger and frustration at him and I am seriously surprised he hasn't filed for a divorce yet. I absolutely lost it. Now I really feel like crap, and you know what scares me, I don't care what he does. I am tired of looking into a face that says "are you really sick?".

 

[terbaer]

Lyndsey, It sounds like you are beginning your journey of acceptance. My counselor told me a year ago to grieve. Grieve the loss of who I was and accept who I am today. I went through that process and although my health issues have deteriorated further, I find myself at peace overall. I still get frustrated at times. I still have my pity parties. I'm human. I had a long talk with my husband and tried to think of ways to describe my pain and health issues. He gets it now. Not that he wasn't pretty good before, but I could tell he was still doing his own thing and not dialed in to my good days and bad days. I find myself a much happier person and just roll with the bad days, rather than holding onto the guilt for not being able to measure up to what I thought I should be able to do. I'm now working on my 13 year old daughter. I choose not to hide my health issues. I want her to understand that this is what I am. It's not life or death, but it just is. She is having to help me make sure she gets to school because I had a really, really bad flare and was bed bound pretty much 24/7 for about 4 days. I did't wake up a couple of times so she was late one day and totally missed another. Good luck to you and keep on truckin' on.....

Python, Good for you! Sounds like he was being an insensitive boob! Maybe it will wake him up. It took a long time for my husband to get it. He was never malicious, he just didn't get it. We're fortunate that when we vacation, we recognize that we have different interests and different energy levels. Have you considered counseling? Maybe a 3rd party would help convey to him your condition? Hang in there. I'll be curious whether your blow-up has any impact on him.....

Hugs to you both...

 

[Lousonthespend]

So true about grieving. I think I'm grieving for the person I was and the person I thought I was going to be. I feel guilty that at times I'm not being the mother I want to be either. This fibro sucks ��