Skip to content
Trying to accept this
avatar
mama1984 posted:
Has another appointment today. I tries asking how to make me better and many other things and my doctor said first I need to stop trying to say when is this going to be gone because it's not,also don't focus on what you have done. You have to accept this and just change with it. It's so crushing I'm 30 with three kids was working 50plus hours a week and went places all the time. Now I do a few house chores I'm done for. I feel so helpless and worthless . My husband supports me which is a Godsend. But still I was in full gear now I can barely sweep or vacuum if I do that guess who can't make dinner me. I'm just so over this. I am trying my best but I, falling apart and just want this gone. To be done with doctors and meds. Go back to work go to the park and the beach all the time, I want my life back
Reply
 
avatar
missist responded:
Hi Mama 1984-- I know that is the thing that gets me too every now and then. Sometimes weekly? And that is since I was about your age--I was diagnosed when I was 30 but had it longer-- took a while to know what it was. It is very very frustrating! The only thing I can say that was good about it is I did spend a LOT of time with my children when they were little. Mainly becuase I was too tired out to go a lot of places. So that was one consolation I think.

It is a hard thing, and the doctor is right it doesn't actualy go away-although it does get easier a lot of the time. And when you get past the worst of it and learn to pace yourself, maybe get some 'tools' that are a help a bit---meds, supplements, whatever other things work a bit for you-- it gets less difficult.

Usually I find the days when I feel the way you do right now-- they go by and there are reasonably good days too. I was blessed like you are to have a husband who could support me-- so other than running the house and raising the kids I did not work for many years-- I feel it is so much harder for the ones who don't have that. Although I did work for some years too.

My big challenge now is babysitting M-Fr more hours than I was thinking it would be-- my grandkids. I'm glad I'm available for that! If I were well enough to do something else a stranger would be spending this time with these cuties.

Lean on your faith --really hard lean. You are going to be OK-- different for sure, but OK.
Mary
 
avatar
An_255674 responded:
Me too. I've known since I was seven. Was told I was neurotic. Needed therapy...geesh. I have 2 boys. 13 & 15. Both have cerebral palsy and varying degrees of autism. One I have to get/fight to get the diagnosis validated so his school will stop fighting me.
I have flare UPS,cthen good times. I was in the Navy, boot camp was interesting, & a B.S. By 25. Now I'm a divorced mom of my 2 guys. ...good kids. But I went from walking 2-4 miles per day no matter the weather, to not being able to raise my head off the pillow or walk down the hall way without bumping into things or hanging on for dear life..
this WILL get better. It won't go away, but YOU will learn your limts. They will change over time. The Tool box to the right on these screens help, a lot.
You are in a full flare up by the sound of it. Your limits will show/identify by you. What gives you headaches? Thinking about the frustration? Me too. So, that I have to limit. The stress will aggravate your system. It's ok to rest or just float mentally. Your body sent this warning shot to let you know it's being pushed to hard.
Let your family help. As you recover, you'll need less help, but keep track of that. Write this stuff down. What works & what doesn't. I didn't, and have always regretted it.
no, this will probably be with you a long time. But. How it effects you (emotionally is the hardest fight). Your pride can remain intact. If you need too view it as you would a broken bone. Do what is needed and things will get better. Take it at your pace/your body will tell you.
but. Flare UPS can be overcome and predicted.
welcome to what we call the FMly. Check in the search for threads about people and how upset it can make you. It does help.
sorry if I seem, well, off. I'm in a flare up, so I get a little fuzzy when I'm tired. But I remembered how I felt, then found these wonderful people. GOOD LUCK, pace yourself and kiss your hubby and kids often. Good endorphins, ha ha. Lucky woman.my ex didn't believe in this. Didn't help with the kids, etc. That's why he's an ex..lol. Good guy, just a bit thick. He he.
ttyl
erica
 
avatar
mama1984 replied to missist's response:
Thank you that is the biggest blessing. Time with the kids it's amazing it's just heart breaking to not do what I could I would take him to beach just about everyday weather permitting and then up early to parks. Then with more kids of course that changes but not really being able to do much with them sucks....they are 11 4 and 2 the best kids in the world . I feel as if I'm letting them down and my hubby because of what I am well was capable of. It makes me break down every time I think of what I can't do and I know focus on what you can but it's really hard as you know when you go full force work kids and life and then feels like you were hit by max truck . I know it's a process and I know many go through it it's still hard and eventually I hope to be as kind as the people up here one day and help someone with advice ...thank you
 
avatar
mama1984 replied to An_255674's response:
Lol yea I've had a few of those men. God blessed me with one who tries to understand listens and is very supportive . He doesn't always get it but he tries and from reading many post that's more than some get, I am great flu for him and my babies. I'm trying the endorphins thing but it doesn't seem to go as well. maby when I'm truly able to get past this is my life faze and it isn't going to go away I can have a better outlook. Thank you
 
avatar
missist replied to mama1984's response:
Mama1984-- That feeling that you are a burden-- the only way I can relieve myself of that when I have it--and I do get it often too-- is to go to my faith.

I believe that God has a purpose for everything that happens to me, as his child. So if this is what has happened in my life--then I have to believe there is some reason--which I will probably not know this side of heaven.

This way I can console myself that I am not really a burden but a blessing in some way my family.

I worked in a nursing home as a young woman before I got this-- actually an injury there was my 'start' I think..

Anyhow I took care of some people who could do Nothing! I mean nothing. I was turning a woman over one night she was stiff as a board-- really could not move without someone positioning her--but she could eat the food I fed her--which was a puree of whatever was on the menu that night. I realized that locked inside that body was a person who was aware of her surroundings and not able to do a thing about her situation.

That night I truly felt the presence of Christ in that room-I realized that this was a holy thing really. I have such respect for life as a Christian-- this just awed me. I saw Christ in this woman's suffering. She was there for me to serve him at that moment.

I hope you don't mind my religious talk here I know these days so many really hate that--but it is a mystery to me-- a holy one. That we are here to be his arms and legs and maybe sometimes we are here to be his suffering body too that others will have a chance to also serve him but helping us.

Pain is part of life I guess, I feel bad for those who cannot tolerate other's pain--who leave their wives that are ill; who judge other's for being sick because they are so blind they cannot see it. They are really losing out on something I think.

Anyhow that is my somewhat odd view of it all.
Mary
 
avatar
mama1984 replied to missist's response:
I am also a Christian and believe everything happens for a reason.my little brother past away in 2010 suddenly from car accident everyday at the end we would pray for someone to come along and help me a good man I had two kids and worked a lot. This young man asked me on dates and I was 8 in half months pregnant so i declined. He remained talking to me and when I had my daughter she was two months when my brother died and I had recently was dating someone else because the guy who liked me was coworker so I felt was in appropriate. So we remained friends but he talked to me every night all night helped me deal with th loss of my brother . Me and other man broke up after couple months because he was not right fo m at all. So I was by myself awhile and my friend continued talking. Me. One night I sat and thought to myself about the person who was their for me the most and what if I was going to miss the man who was perfect for me. So I gave it a try and needless to say not long after we had a girl got married and bought a house. He was my answered prayer and I am blessed to have him. My job was very hard a lot of hours and always wished and prayed for more time with kids. Well I always had a small feeling God wanted me to be home more and wanted me to leave job but I hesitated. Well then one day at work I got rear ended while I was pregnant with my third child and I roughed it out at work with all the pain from accident had csection and returned to work still hurting from accident I came home and was unable to move after work nothing was same I was incapable of doing my job right. So needless to say I was pulled out of work. So the accident chanced my life and now I have a ton of time with my kids. I hate the pain all the time and sucks everything is harder but God gave me more time at home...still wish I could actually do things with them more and not be in so much pain. I guess if I would have listened and worked else where I wouldn't have had such eye opener ....well hopefully my story makes sense for someone reason I can't focus same remember simple things now lol so sorry if some doesn't make sense I guess the point of it was to say I believe the same
 
avatar
missist replied to mama1984's response:
mama1984--- yes I thought you did. It is a comfort though you know? To know you are doing what you are supposed to---even if you have pain. If I never got fibro I would not have been a stay at home mom. I learned a lot by being home with my kids. I also have developed an eye for small things-- little tiny plants outside in the lawn attract my attention. I am not in as much pain as I was years ago--but the tightening in my body, the stiffness that makes getting up and walking around more of a challenge tells me that I should do what I can now---as maybe later I won't be able to. Arthritis as well as fibro.

so I am babysitting my little grands and I garden--which can be a painful thing sometimes but I am trying to pace myself well in it.

Eventually your pain level will probably decrease a good deal--- so that is something to be glad about. Most of us have found that to be true. Not that it will go away but you'll adapt to it.

As a Christian I believe that 'the lines for me are drawn in pleasant places' --- comes from a Psalm. It means God gave me a good life here---and He knew exactly what kind of situation to place me in.
Mary
 
avatar
mama1984 replied to missist's response:
Yea they said the arthritis in my bck in neck would get better with time. I was just disheartened when I was told I would never get better. Then I would get better in less than three years. Then this time again that I wouldn't . So I look forward to the pain lessening. I will say the nurse practitioner I have seen a one time at the practice told me I should join a focus group Etc...I will say it's helped some I don't feel so alone like no one understands it's nice.
 
avatar
bette_kaffitz responded:
Mama, Mama, Mama, you are not your illness. You are a loving, caring person who is doing the best she knows how to in a bad situation. No one knows how long this will last. You could be a lot better tomorrow--or a lot worse. There could be some wonderful scientific breakthrough next week--or not.

The thing is that you are beating yourself up for not being perfect. How sad. Did you sit down one day and say, "I'm going to give myself fibromyalgia and arthritis so I won't have to work around the house anymore?" Did you do that? No. You got sick. It was no one's fault. It was certainly not yours. Sometimes bad things happen--even to good people like you.

Now, about your house. No one keeps a clean house for her mate or her children. You do it in spite of them. You go around picking up after them. You expend energy you don't really have to spend. Then they go and dirty things up again. Nowhere is it written that you are the only person responsible for the tidiness and cleanliness of your home. You are not the sole dirtier of that house. You should not be its sole cleaner.

Do what you feel you have to. Spend what energy you feel you can afford to spend. But don't ever feel guilty about the things you just can't do.

How many times have you done something when you knew it was too much? How often have you paid too high a price just to have the floor swept or the dishes washed? Floors just get dirty again. Paper plates are not illegal. Save your strength and energy for the things that matter. Read a bedtime story. Give a hug. Find the strength for those. But don't ever feel guilty about the time you did not spend on THINGS. Save your resources of time and energy for people.

And stop beating up on yourself.


Bette
 
avatar
mama1984 replied to bette_kaffitz's response:
Thank you ...I cried like a baby reading this but it did help..you are right no one would ever ask for this. I'm just trying to reach a point where I accept and not to cry when I talk about it. Because I know I'm blessed with n amazing family and home . I just want to I dunno find my happy place again and my way to really deal with it and work with it. Thank you I needed that ..I always told my husband I'm tired of being tired and he didn't understand until I did research and realized it was me just a part of this. I just wanna wake up and not be so tired I know everyone wants to . I do wander do you have anything that helps you get going in the morning and not feel like you didn't sleep the night before in the afternoon
 
avatar
missist replied to mama1984's response:
Mama 1984- Bette is so right about housework! I use paper plates and bowls-- hurts my hands to do too many dishes and I drop them. I also have a problem getting thing vacuumed --- hate to admit how seldom I get that done. My hubby shaves our german shepherd to keep his hair mess down. When I do vacuum I generally also run the carpet cleaner-- but that's all I do then for a few days.

It kind of 'grosses me out' as I have a perfectionist bent when it comes to clean--my mother really raised my sister & I to clean clean clean--everything. I cannot do it. She couldn't either. When my sister & I moved out she got a cleaning lady. Perfect is hard when you are healthy--it is impossible when you are not.

Mary


Helpful Tips

For All our new members
Welcome all new members, I want you to understand how important it is to be o.k. with coming here to lift your spirits and release ... More
Was this Helpful?
370 of 397 found this helpful

Related News

There was an error with this newsfeed

Related Drug Reviews

  • Drug Name User Reviews

Report Problems With Your Medications to the FDA

FDAYou are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.