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What to say when someone asks you what can i do to make you feel better

Dec 26, 2015 1:24 PM

As u all know ,day to say we live a pretty hirid life as far as pain and discomfort goes. And stress and tension comes with illness. And we all know the key words or phrases we hear all the time. Can I help?/do u feel better? Blah blah..
But if u k iw the intent is good what do u say ?/me, I just say no I don't feel better a d as my condition goes I'm gonna feel better. I don't know what will help? I can't help myself.
I feel bad for dismissing them like that but I really have no clue. In honesty I would love to have someone help me with cooking and bring me drinks and help me stack those Pillow's. But that feels like I'm being g a lazy person or beingneedy especially when you know there is another very needy patient in the home. So I try to be as Independent as I can.
So... Back to the original question... What would u guys say to someone who ask you what can they do to help?

Dec 26, 2015 1:53 PM

I've asked someone to take me with herwhen she goes grocery shopping, but for the most part, I don't get asked. My local friends all disappeared once I got sick and could no longer drop everything to help them. It seems unfair, but I guess it really showed who my real friends were..... And were not.

Dec 26, 2015 2:01 PM

I've had that happen too Phoenix.. In fact. I actually had an old friend to call and ask me to comfort his new wife over some bull and this after not calling me for three months. It sucks and yes it does show u who us real. Mostly its my family asking but I only get asked when its convenient for them. Um sorry u had to experience that though.

Dec 26, 2015 2:09 PM

Thank you, it hurts, but at least I know who I can count on now. Every now and then one will message me and ask if they can talk, but it's only cuz they need me to listen to their problems and tell them it's gonna be ok. I don't get a word in edgewise. They also keep saying they'll come by and see me, or pick me up and we'll hang out.
.. then I don't hear from them for months.... In a way, I'm glad their true colors showed. That way I don't feel as guilty for not answering their calls or waiting hours before answering their texts. Lol.... Still feel a little guilty, simply because I'm not the spiteful type..... But if I don't feel good, I'm not going to answer a call so I can comfort sometime who doesn't give a rat's behind if I'm ill.......

Dec 26, 2015 2:50 PM

I can completely relate with the lack of support from family & friends. They all seem to only need you, but not there to support you. I've finally told them, they don't need to worry about it, because I won't let them know when I'm not feeling right or up to anything; I will keep it to myself.

Dec 26, 2015 3:37 PM

New, I have got an idea for me tomorrow. My mom is coming with me for my infusion tomorrow and I asked her if she would be willing to come upstairs with me which she agreed too. Primarily for moral support but also to let her see and experience what I go through with it. And yes people do ask me if I feel better, blah, blah. The response to that question is always no. My condition will not get better, if anything it will probably get worse in time.

Dec 26, 2015 11:32 PM

Amanda that sounds like a great idea..

Dec 27, 2015 4:28 AM

New, I thought it was as well, but I still refuse to take her queasy butt with me to the surgeon, given past experience already. Uhh, no!

Dec 27, 2015 6:39 AM

People don't want to hear the truth. They know that you are having a problem and they want you to say that everything is fine. I've lied too many times and said that I was fine when my pain was killing me. I don't lie about anything else. This last summer I was able to get around better than I have in the last 20 years. I wasn't on a walker or my chair. Everyone assumed that my life was fine. I just underwent serious shoulder reconstruction surgery and will have my left knee replaced in February. It should've been done about 10 years ago. It has sub chondral sclerosis and chondromalacia type three, with a bone tumor and cyst with severe bursitis. About six months later I'll have the other knee replaced. When I asked my doctor if the right knee was better, He replied that it was sh... I have so many different diagnoses that it would take a long time to place them all here, so I'm in good company on this board. I am undergoing a sarcoidosis flareup right now. However, people don't want to hear that, they only want to hear that you're okay. When I told them the truth about how I feel, it was too painful for them to hear. I find that hilarious because if it's too painful for them to hear what about my pain? What ticks me off is that so-called Christians treat me that way. I'm not lying about this anymore and I'm glad that you don't. I basically tell them that I'm hanging in. However, I was surprised that more than 30 people from my congregation visited me when I had my surgery. For 2 1/2 weeks, various sisters cooked meals and brought them to me because it was the right shoulder. They respond better when you have surgery than when you have chronic medical issues. I really think that they understand surgery but don't understand chronic issues that are debilitating. It is up to us to educate those who treat us differently because they really don't understand us, but truly want to. It's overwhelming for them. We have to do it very slowly by giving them a little bit here in there. It has taken five years for the elders to make the statement that if a person is suffering from the flu or otherwise contagious, for them to stay home out of deference to others who have compromised immune system. That announcement was made because I educated them. So hang in there, and try your best not to be offended. Yes, I know that's extremely difficult because you are suffering so much. Sift out those who you think you can educate and leave the others alone. You don't need the added stress of dealing with ignorant people.

Dec 27, 2015 8:35 AM

Thank you donamel..I appreciate your input. I've only been dealing with the actual diagnosis for abiut 11 months. Of course had pains for years but ignored it. Until I had pneumonia twice in a row and ended up in the hospital. Shortly after I was told I had multiple abdominal tumors polycystic ovarian disease and fibromayalgia. Along with limited mobility in right shoulder in which they have not diagnosed yet. The doctor's keep pushing it to the side due to other more serious issues. And yes people who I know don't get it especially family. I've only have one friend who was honest enough to say " I don't understand your condition it doesn't make since to me but I know you. And I know you don't complain and if u say you hurt then I believe you." That ment so much to me. She still calls daily. Multiple times a day she ask questions she looks things up so if only everyone would.be like that. I can't even get my mom to look up thi ngs or read information we give her. I'm blessed I have two uncles with fibromayalgia so they understand.

Dec 27, 2015 8:57 AM

There are times where well intentioned family members will ask if I feel better or if there is anything they can do for me. One thing I say is, unfortunately, with my condition(s) I'm not going to get better. I have horrible days, bad days and not too bad days but rarely a "good" day with pain. Sometimes if they want to know what they can do, I'll say, you can give me a hug or I'll just say, there's nothing you can do, I wish there was, but it's ok. I know it's hard on my folks to see me suffer all the time. Sometimes I'll go downstairs and I have been crying and my Mom will look at me and say, "I'm sorry". And I just say, "it's ok". It's hard to know what to say sometimes. Most folks who ask how you are, don't really want to hear about it. They just want to hear either ok, not bad or so so (with no further elaboration). I wish that I had a better suggestion for you. Unfortunately, it really also depends on my mood at the time in asked and who is doing the asking. {{{{Hugs}}}}💕🙏🏻🌻

Dec 27, 2015 10:10 AM

Thanks alwyas..I do most thr same thing. Moat times I always just so no its nothing you can do .as I'm barely able to walk. Ha..u know dumb but its like if I've made it this far I can do the rest. And I wish I could cry... I have onkybcries like three times this whole year. Because I'm afraid of one making the pain worse and two making my family feel bad. So I just hide away and stay as quite as I can. Crying actually may help some being able to talk about my pain does help which is why I'm so thankful for this group and my uncles. One actually told me if I tell him I'm fine again and I'm not we gonna have a problem.. Ha.. He ment it..lol. He also has fibromayalgia so he understands. So I get to talk to him alot. And since he knows what I'm going through he knows what to do without asking. Which is great.

Dec 27, 2015 10:28 AM

You know, sometimes you just need to sit down with the most important people in your life and open a dialogue. Speak in easy terms that they will understand. Give them examples. Have them think of a pain they had that was aweful. Then tell them to multiply that pain by whatever and think about having it 24/7/365. That usually gets people to understand. Don't be afraid to say, you know what, I'm having a really bad day so if I seem off, that's why. Just saying the words and having someone close knows about it, you feel a bit better. Also, don't be worried about your tears, they are a release.. I do my share of crying alone in my room.. But I also have cried in front of my family. I don't do it often but it it happens it happens. Sometimes I feel better and other times it just turns my nose red, plugs my sinuses, gives me a headache and makes me more miserable..LOL!!) I wish I could make it better for you but just remember that you have all of us. Sending you gentle {{Hugs}} and prayers for a peaceful day. 💕🙏🏻🌻

Dec 27, 2015 11:42 AM

I have such a issue telling people my illness they seem to look at me like im absolutely crazy ..so around my family grin and bare it than lockmyself in a bathroom and cry ..my husband trys to understand but he just doesnt i went through a bad depression year ago and he just tucked me away and complained about my issues we seperated for a while back tohether but he does in no way shape or form understand..tries but no ..dont get me wrong hes good to me and I act the part of im fine all the time ...sometimes just a simple hug and a are you ok would feel so nice :(

Dec 27, 2015 12:19 PM

I got asked this by a lot of people when using walking aids or a wheelchair, and especially when my foot turned strange shades of red, purple, and grey. I couldn't wear socks either. Most of the time I'd just shrug, or if they were close to me smile and ask if they would either help me get to the next class, or find someone else who could.

I wouldn't usually say this, but I would think, "just treat me like a human, talk to me, tell me about your life." I couldn't walk, write, or really talk much (memory issues, more than 3 seconds and I was guaranteed to forget) but wanted to. Also, the average person (teen, I guess?) doesn't really know or want to know about PT and the children's hospital, and all the weird random sh** that happened. They couldn't understand why I needed a cane or walker when I'm not "broken".

No cast, just a limp and a horribly shy girl to top everything off. Honestly, the people that made me happiest was early confluence prep, when I could still use my hands. In my writing group, Caity would talk to me even when I felt invisible. My best friend pushed my from class to class, talked and laughed with me, and I trusted her even when one of the curbs was so tall I nearly fell out of my chair.

If you need help, ask for it, at least once in awhile. I get that it's hard, but it's also necessary to function and quite a few people want to help.

Dec 27, 2015 4:50 PM

My Husband doesn't really understand, he still thinks that thinking positive hard enough will mentally make it so. I wish. Having a positive attitude helps with sadness/depression associated with my fibro, but doesn't remove the pain. He is constantly is trying to be Helpy (as in trying to help, but not actually doing so)- encouraging me to get up and be active, and reminding me to eat when in pain. He is always asking how he can help since he hates seeing me in pain, and doesn't like seeing the side effects of some of he meds, and questions weather they are actually helpful...

I always tell him can help with the little things- a meal, a hot bath, a massage, doing an errand for me, letting me sleep in, keeping the kid on track, etc...

For friends who are truly asking what they can do to help- I also tell them to keep me in the loop, stay in touch, let me decide how much I can handle if you want to invite me out. Don't focus on my illness during conversations. Dont compare your aches and pains to mine- it not a competition

For some family and friends I gave them a "letter to normals" to help articulate what I was going through, and they seem to be more understanding for it.

Dec 27, 2015 4:55 PM

My husband sometimes does this raven!

Dec 27, 2015 4:56 PM

Compare i mean ugggg if they only were in our bodys for a day!

Dec 27, 2015 5:55 PM

Awesome ideas and tips.. And @ ravenrose..the think positive to make it better.. Lol..I heard this so much... Wow..if they only knew ..lol it is hard to start a conversation with my family. Sometimes I feel they forget I'm sick. I fake it so long until I crash and then they remember. Like today my sis was doing my hair in preparation for a trip to the hospital I'm scheduled for and she got to a tangle in my hair and I flenched.. And she was like" really " that hurt ..and I said yes! And I could tell she was like how? So I just sat there quite as I could . but thank GOD he reminded her.. What does not hurt u is murder to her.. So she then was much more gentle.
I suppose I just wish with all we have to deal with that having family support was one of the easy things. Why do we have convince people we are telling the truth all the time. Why do we have remind people to be gentle and caring.

Dec 27, 2015 7:06 PM

New, don't get me started on "think positive, it will get better". I nearly snapped on my mom this morning when she said that. She also said it's partly my fault and that I'm always negative. Well, she would be negative as well if shit kept happening to her totally outside of her control. Sorry, just needed to get that out already. Even my family just doesn't get it.

Dec 27, 2015 7:24 PM

It's OK Amanda. I totally understand. Immso concerned that I'm gonna really snap on my mom one day. And yes I had to remind my mom that she can never understand howe and my dad feel because she is never in pain so she can never understand.

Dec 27, 2015 8:18 PM

I just say right now I can't think of anything but when I do i will let you know and thank you

Dec 27, 2015 8:32 PM

I've had people, my boyfriend is the worst offender; who cannot understand the fibro fog and my inability to sometimes complete a sentence or thought. He also gets annoyed when it takes a minute or two to answer a question, because I want to make certain. I'm answering it correctly. This also happened during a work interview/meeting. So frustrating and annoying! !

Dec 27, 2015 8:36 PM

Oh. Anniesgt. The fog. I hate this fog and it seems to only get worse. Even on OK days I still have a hard time getting thing out. Like when I was helping my sis do some.bakes gifts for her staff and I was writing the cards and I kept forgetting what she said to write and then I would turn the words all around . she laughed it off but for me I was frustrated. I try t keep it light when I make a fumble on speach but it really is hard to deal with.

Dec 27, 2015 8:40 PM

Newfibrogirl, it's beyond frustrating. Even more so when others get annoyed at you. I've been brought to tears over it..but I won't quit.

Dec 27, 2015 8:48 PM

No.anniesgt we can't quit. I've never been one to let anytt get me down and I've to say this fibromayalgia and the tumors have really worked hard to take me out. But I'm not the one to just lay down and not fight. One thing that my boyfriend has been saying to me that I am just now starting nto get is that I have to learn a new way to fight. I've always benna push through it to kill it type. But we know fibromayalgia is a beast and does not fight fair. But that's OK.. I don't fight fair either. Ha..I've nkt focused a lot on the fog as to how to fix it but its on the list.

Dec 27, 2015 10:07 PM

You are so right, newfibrogirl, the fibro is a beast! I'm glad your boyfriend is there for you. If you can find a new way to fight, please let me know, I'm up to try just about anything.

Dec 28, 2015 9:15 AM

Demand to have an MRI for your shoulder. For years, they have been doing x-rays of my right shoulder and the results showed that it wasn't that bad. The MRI showed that the shoulder was horrible. I am now recovering

Dec 28, 2015 9:18 AM

's surgery from a complete rotator cuff tear, acromium type three, and they also had to cut into my clavicle. Don't let them put this off because it's important. Therefore, they did shoulder reconstruction . I don't want you to have the pain that I underwent with that shoulder. Every night an atomic bomb went off in that shoulder and I could not get any more than 1 to 2 hours worth of sleep. Please demand that they give you this test. It only takes about 45 minutes and then they will know.

Dec 29, 2015 12:04 AM

When people ask how I am feeling I answer truthfully and say something like - I am feeling pretty good for my new normal or with this as my new normal I feel like.... then if anyone asks what they can do to help I say just come over and keep me company while I try to do .... I find that they then just jump in and help. I did a short post about such on my blog and have gotten some thanks for discussing how spouces and family can help.

Dec 29, 2015 3:44 AM

Zetarlov i think people under estimate how important the simple act of coming and just sitting with us is. Just to have someone come and not be in a hurry to leave. I think I will try that.

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