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Family tring to make me " normal"

Mar 12, 2016 7:15 PM

So I had a conct with my mom today . it all was good g normally but then she says * u need to get out the house, go see your cousin or do something. " so I'll make the back story short. As u all know fibromayalgia drains u like a leach. I'll have multiple appointments and errand to run. And the just learning to deal with my new way of living. And there has been several arguments and misunderstanding with my family in regard to my health and the ability to so certain things. So today just makes me know that I must not have gone as far with my family that I thought I had. They feel I should have the energy to go out and be social after Dr appointments and grocery shopping and random errands all while being in pain and havi limbs go numb on me.
They will never know how it feels to live in my skin. And I dont know if I ha e the energy to keep trying. Thanks for listening.

Mar 12, 2016 7:46 PM

Newfibrogirl, unless they live with the exact same thing they won't understand. I've quit trying to explain myself to family, or asking for help. I asked a daughter if the boys or them could come help her dad with yard work today, because I'm literally getting breathless with the least effort. Of course they had other plans that couldn't be changed, even though I offered to pay them. Their accounts got hacked and they have no cash because the bank locked their accounts. Anyway, they could have worked on his car tomorrow under h his dad's shed, helped her dad, and earned some cash. Instead my hubby overdid it by himself, got sunburned bad, and is going to hurt awful tomorrow. I guess they couldn't use the money after all, or maybe they didn't want to work for it. I & my siblings were raised to work for money, so maybe I'm just old fashioned. Oh gosh, sorry for the rant!

Back to your family, I'm not sure they will ever understand. My dad does because he's developed chronic pain issues in his knees and hips and can no longer get about. But before it happened he thought like your family. Sending you hugs!! 🙂💕🙏🌼

Mar 12, 2016 7:51 PM

Oh, Newfibro, I feel your emotional pain with coping with the disease that you have. I know I barely get the grocery shopping done, forget about putting it away before I collapse in my chair with my heating pad & pain med. The only reason I can shop is the grocery cart to lean on & have had to really cut back my list or it is just too much. It is all a balancing act to not slip into black misery pain.
Try to rise above them & just keep living your best life with what you have to deal with. God knows it makes us stronger than they can even imagine. Thanks for sharing.

Mar 12, 2016 7:53 PM

Flappys don't apologize for venting I don't mind at all.. I too was raised to work for my own. It's sad that people who are suppose to or that u would expect to there are not. I am becot use to that idea. I actually am starting to react or not react to what they say anymore. The constant comparison of aches and pains and non related symptoms.
I'm.sorry your hubby has to suffer because he could not get the help he needed and I'm sorry you have to see it.

Mar 12, 2016 8:08 PM

It's always hard for people to understand unless they have been there or can "see" your pain (ie: broken arm). My family doesn't understand either why at 29 I'm not able to do "normal" things. I have had my wife come with me to an appt or 2 when I go to the pain clinic so and that has helped her understand better as she has been able to ask questions that maybe I wasn't able to explain or she had trouble understanding and I have done the same thing with my shoulder surgery.
Maybe it would help you as well if someone close to you that is having trouble understanding came with to an appt or 2 (boyfriend, Husband, mom whoever)
Hope things start looking up for you and your relationships with family and friends

Mar 12, 2016 8:12 PM

Thanks johndelon...I have had my mom come with me to a lot of appointments. I think she hears them but she has not accept my iillness yet. She has a hard time and there for the makes it harder for me.

Mar 12, 2016 8:45 PM

Thanks Newfibrogirl. I take my hubby to many appts, and he is my biggest supporter and comes to my defense often. But even he forgets that my issues are here for the rest of my life. Sometimes it's even hard for me to swallow. I'm 54, and started with spine issues at about your age. I told my hubby this morn that if someone had said to me 10 years ago I'd be like I am today, I'd have called them a liar. I never dreamed my life would change so fast. If it's hard for me then it must be much harder for loved ones and friends. I try to ignore ignorant or snide comments. But some days it's much harder to do. Wishing you AOL a good night! Hugs!!🙂💕🙏🌼

Mar 12, 2016 9:18 PM

My family is the same as well. My husband comes to all my appointments but often forgets until I get lightheaded and stop moving or my wrist seizes up trying to open a door or a jar. I think it's hard for them because they go back to normal after feeling sick.

Mar 12, 2016 9:22 PM

It's so good that you all understand! Wish I could explain better. I spent about an hour working on a craft project with 2 young granddaughter's, did not finish it & it's all over my floor and then was invited to go out. I could barely stand. I said, "I feel like I just built a diesel truck and then got run over by it." I hadn't eaten so as usual, had easy frozen food, toaster waffles tonight. There's no one to help at home for me.

Mar 12, 2016 9:24 PM

Exactly cdngirl.. They can't grasp the concept of Life Long illness. This is not gonna go away. For me I also have abdominal tumors which have grown and attach to the bladder . so they say once u get the tumors out you'll be OK..they don't think of the damage the tumors are doing inside. Mostly cause the don't want to becaue it's painful for them. I'm being to understand that. However , I'm also realizeinf simply because they can't deal don't mean I've got to put myself into more pain. So I've started saying no them if I can't or don't want to do something. They don't like that...ha..lol

Mar 12, 2016 9:45 PM

I've started saying no as well. I told my husband that even diaper changes are hard because of maneuvering my wrists.

Mar 12, 2016 9:46 PM

I figure it's gonna be a learning experience for us all.. So u have a brace for your wrist? I've been having issue with my ankle last few days

Mar 12, 2016 9:50 PM

No braces. Yet. The neuropathy affects 3 of my limbs. I'd look like I was doing extreme sports if I wore braces! Lol.

Mar 12, 2016 9:52 PM

I hate that for you..but I do understand.. I'm trying to stay away from devices as long as I can. I only use a wheelchair when doing long errands

Mar 12, 2016 10:38 PM

How old r u newfibrogirl? I've noticed it can also be hard for ppl to accept that you have what you do bc of age, like myself being 29 and having had my problems for almost a decade already. Do you have kids? I have a 2 and 4 year old girls and I just feel horrible that I cannot be the active and fun father all the time like I want to be, it's such a horrible feeling. Especially since they don't understand why daddy can't get down and play on the floor or take the, outside to play etc

Mar 12, 2016 10:43 PM

I'm 37 and have been taken down with this pretty fast. This past year I've been slowed down considerably.

Mar 12, 2016 10:49 PM

johndelon0587-> I just posted for the first time a few minutes ago & have same issues as you. Being a father, but not being able to really "be there."

Mar 12, 2016 10:50 PM

Hi. Im sure u both are doing your best.. I have worked with young kids for while. If I Amy offer some ideas for playing and interacting with your kids.

Mar 12, 2016 10:53 PM

Ya it's tough, I go to a pain clinic and am able to get pain meds but I save those for flare ups and such or at night. I do what I can when I can

Mar 12, 2016 10:54 PM

newfibrogirl- I have had similar issues with my family. Like this past Christmas. With split families & 4 Christmases within 3 days, I was done with Christmas before going to my dad's. My family didn't get it. I ended up going home because I was too exhausted, mentally & physically, and that ticked my dad off.

Mar 12, 2016 10:54 PM

If they r small like infsnt to 5 yrs old you can do activities like coloring and foam darts.. If u like to go outside maybe find a park wher u can sit or bring u a chair and have a game of doagde ball or frisbee. If they r older do things like movies or find things I can do inside like go to library or if your town has put door spring movie showings may be good lpw impact things sadly you will probably still be worn out and tired but at least u had some time with your kids.

Mar 12, 2016 10:55 PM

And thanks for the of newfibrogirl

Mar 12, 2016 10:57 PM

Thanks for the play ideas Newfibrogirl!
I pray your family starts to understand what's going on with you physically soon.

Mar 12, 2016 11:00 PM

No problem guys..woodrumma... It is hard and I wish it was not the way it is but if we stick together we can help each other.

Mar 12, 2016 11:01 PM

I agree newfibrogirl! We absolutely can!

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