Complaining about fibromyalgia with friends and family

[Dooi]

@links56 "here here" to that. I used to vent a little too often to family and friends but I've realized over time, that while they love me, they just can't relate to what life is like. After a while I see them tune out and I know I'm overstaying my welcome of complaining. I'm not really complaining, but I know that's how it sounds to them. Better to share here and there instead of weighing down my loved ones that have their own worries and issues in life.

 

[links56]

If you try to share with loved ones or friends they don't understand and in my experience you will lose the support of your friends and family because they just get sick of hearing it and they can't see how your hurting or "it's all in you're head!", unfortunately for me it happened too late and now I have no friends or family anymore (other than my wife and kids) but they don't understand either. I get more relief on here than anywhere because you guys understand what's going on and how I feel and can relate.

 

[Dooi]

I moved this thread so we don't hijack the previous thread starters (TS) thread.

I've driven my family a little crazy, especially previous to being diagnosed. I've also lost a girlfriend or two as a result.

It's nice you have somewhere to vent, and it's also nice you still have your family. I'd to afraid to see the statistics on fibromyalgia and divorce, there has to be a higher incident rate, as sad as it is. So, good for your for managing your family as well as your symptoms.

 

[sunkacola]

The main problem as I see it is that it is not possible to be honest with someone about why you cannot do something you planned to do without mentioning something about it. Just to say "I don't feel good today" only goes so far. If you say that enough, someone sooner or later will ask you what is wrong. Then if you answer honestly you are "complaining". Even if the other person or people do not seem to mind, *I* mind, because I would rather not talk about it at all. Any talking about it feels to me like complaining, since after all there's no positive resolution to the talk, it's not as if it would lead to something that would change the situation for anyone, least of all for me.

Personally I don't care to vent, and never do. To me, it only makes things worse. I do my best just to accept it as it is. Be grateful for the days and times I feel better, and just let the bad days be what they are. I try to make the bad days into "cozy stay at home and watch a movie with my dogs" days instead of Bad days.

 

[Dooi]

Personally I don't care to vent, and never do. To me, it only makes things worse. I do my best just to accept it as it is. Be grateful for the days and times I feel better, and just let the bad days be what they are. I try to make the bad days into "cozy stay at home and watch a movie with my dogs" days instead of Bad days.

This is is pure genious in its simplicity. So very true. Make the best of the good days and do your best on the "bad" days.

Everything is perception, if you perceive things are all lost, then despite the reality, everything thing will seem lost.

It only takes spending time with a positive person to realize while their life may not be perfect, they perceive much of their world in a positive fashion and thus, so it is to them.

Thanks for sharing @sunkacola, you've already made me think about how I'll look at my day. I think I'll choose to be grateful.

 

[sunkacola]

Hi Dooi, glad that my thoughts helped you a little bit. I'm no Pollyanna -- I am a realist, and while I am an optimist I don't go around saying that everything is just perfect the way it is because to me that's ridiculous. But equally, I have learned over the years that focusing on the negative is NEVER helpful. focusing on the positive might help, might not, but at least it never hurts.

Another thing I practice in the way of perspective is to remember how abundant my life is. The fact is, and this is a statistical fact, if you have a place to go to be and to sleep every night and you can close a door and be safe, and if you have fresh drinking water, enough food, sufficient clothes and shoes, and even the smallest amount of money at all, you are among the top three percent of the wealthiest people on the whole planet. I never lose sight of that. I never compare myself to the rich people in my country who have more than I do, or the ones who are healthier. I think about the ones who will never in their whole lives have a glass of ice water to drink, and I feel pretty darn lucky!

As you say, it is always an option to choose to be grateful, and anyone who has access to this forum through the internet is very likely to be in that top 3%, and has a lot for which to be grateful.

 

[Momneedsanap]

I am new to this. So far I’m only sharing with family and close friends. I’m trying not to be the complainer but I also want them to understand the reason. That I didn’t go to an event because I didn’t feel good. Or perhaps I had something big planned the next day and felt like I couldn’t do both. I wasn’t “just” depressed. I wasn’t avoiding them.
I’m just trying to balance my energy. Fortunately I don’t work (but I’ll need to down the rd) but I have 3 kids.

 

[sunkacola]

momneedsanap, I don't know how you do it with 3 kids, and I hand it to you for managing that. I truly understand what you mean about balancing things and sometimes not having the energy to do two things back-to-back or near each other, and you have to choose.

Sometimes this itself is the hardest thing for people to understand. ----"If you could do that, why not this, too?"

Another thing that is hard sometimes is for people to understand what kind of energy is required for different things, and how sometimes I have one kind of energy but not another. For instance, I am a very introverted person, so it takes more energy for me to go to a place where I need to interact with people and socialize than it takes for me to go for a walk, or even to my dance class because I don't have to walk fast or dance hard, and in those places I don't have to talk to anyone much.

This has been a serious struggle with the person I am partnered with these days, although things have improved a bit over the past year. I think fibro is a very difficult thing to manage because it's so capricious. It is easy for people to think you are using an excuse to get out of something because you sometimes can and sometimes cannot, and the fact that it is an invisible disability for the most part adds to the difficulty.

For me, it just has come down to this: I am no longer willing to apologize for the fact that I have this disability. I tell people how things are for me, and that there are times I may have to cancel plans, and that it is up to them if they want to believe me when I tell the truth about my condition or not. If they want to choose not to believe me, then whatever the relationship is or could be, it will not be sustained. I am an honorable person who doesn't lie or play games. I am as straightforward as they come, so if a person chooses not to see me for what I am they don't need to be in my life.

And that is part of balancing energy, too. Keeping out the people who make it worse! I was getting some grief from my partner about it a few times, and I finally just said, "Look, you don't have to take care of me. I won't ask you to do things for me. You don't have to do anything at all, in fact. But I will absolutely insist that you do NOT do things that make it worse!" And that includes having a bad attitude toward me because I cannot do something that I want to do just as much as they want me to.

 

[Im fine]

Ok, I'm a complainer. I'm not proud of it, I'm sure people (family) get tired of it but sometimes I'm just venting out loud. I don't expect or want anything from them I just feel like it kind of helps me if I verbalize it. What makes my particular situation bad for me is I'm 65 yo and have lived with fibro for about 30 years. It was bad enough back then but now I'm also dealing with age related problems. My husband is only 55 yo and our daughter (36) and 2 young grandsons (4 and 6) live with us. They don't understand what it's like to be 65, growing tired, ache from arthritis and hurt from fibro to boot. I try to stay active but my husband and I have a small dog, 6 cats and a bunny that I take care of and clean up after everyday. Vacuuming, washing floors, cleaning the bathroom every single day a long with helping to make meals and just taking care of the house. Sometimes the grandkids actually help to make me feel better, but nonetheless, I'm the oldest in the household and it's getting difficult for me to keep up. This just isn't what I imagined my "golden years" to be like. My in laws are in their early 80s and are much more active than I am and it's depressing. I get Social Security Disability but am having to look for a part time job cause my husband was unemployed for 2 years. That's a whole other story.

 

[Dooi]

Ok, I'm a complainer. I'm not proud of it, I'm sure people (family) get tired of it but sometimes I'm just venting out loud. I don't expect or want anything from them I just feel like it kind of helps me if I verbalize it.

There's definitely something about "letting it out" that can be liberating and healthy versus keeping everything bottled up and feeling like you're not being yourself, or worse yet, honest with yourself and others. I can't say I never let loose sometimes, I just try to keep an eye on it so it's not "all the time".

They don't understand what it's like to be 65, growing tired, ache from arthritis and hurt from fibro to boot. I try to stay active but my husband and I have a small dog, 6 cats and a bunny that I take care of and clean up after everyday. Vacuuming, washing floors, cleaning the bathroom every single day a long with helping to make meals and just taking care of the house. Sometimes the grandkids actually help to make me feel better, but nonetheless, I'm the oldest in the household and it's getting difficult for me to keep up.

That actually sounds like quite an incredibly productive day. If you're able to fight through everything and keep this up I think you deserve to give yourself a mental pat on the back. That's quite impressive. My days are mostly idle with a push form myself to keep busy and stay positive, but from the sounds of what you accomplish, I think I should push a little harder.

 

[sunkacola]

Ok, I'm a complainer. I'm not proud of it, I'm sure people (family) get tired of it but sometimes I'm just venting out loud. I don't expect or want anything from them I just feel like it kind of helps me if I verbalize it. What makes my particular situation bad for me is I'm 65 yo and have lived with fibro for about 30 years. It was bad enough back then but now I'm also dealing with age related problems. My husband is only 55 yo and our daughter (36) and 2 young grandsons (4 and 6) live with us. They don't understand what it's like to be 65, growing tired, ache from arthritis and hurt from fibro to boot. I try to stay active but my husband and I have a small dog, 6 cats and a bunny that I take care of and clean up after everyday. Vacuuming, washing floors, cleaning the bathroom every single day a long with helping to make meals and just taking care of the house. Sometimes the grandkids actually help to make me feel better, but nonetheless, I'm the oldest in the household and it's getting difficult for me to keep up. This just isn't what I imagined my "golden years" to be like. My in laws are in their early 80s and are much more active than I am and it's depressing. I get Social Security Disability but am having to look for a part time job cause my husband was unemployed for 2 years. That's a whole other story.

This is only a suggestion. Maybe give it some thought, and really ask yourself if the complaining you do is helpful to you or not. I know there's value is venting, but there's a limit to how helpful it really is.

My experience is that if I spend very much time complaining, all it does is spiral me down into darkness and more and more thoughts and feelings about my situation that are negative. It simply doesn't help. And, if you complain a lot to people around you they will get very tired of hearing it and ultimately be tired of you. It is frustrating for them, because they can't fix you, and the result is you alienate people when in fact you need to keep them close to you.

So, maybe try this, which works really well for me: I do not complain. Not ever. I don't play as if everything is peachy if it isn't, but I just state things briefly and matter of fact: "I am not doing so great today physically". And that's all I say. If someone asks questions, I answer them, but don't allow myself to go on about it.

...Now, there are times when I really need to b***h and moan! So, what I do is I made an agreement with someone that I can ask for 5 minutes of venting and complaining time. That person can say no if they really don't want to hear it right now, but they never do because it's only 5 minutes. Then I set a clock in front of me and for 5 minutes I complain all I want to. When 5 minutes are over I stop. Done.

I have found 5 minutes is plenty of time for it if you put your heart into it! And then I feel that release, and the rest of the time I can just go about my day doing the best I can. You can even make this into a game with your grandkids....give each of them 5 minutes to complain about something if they want to.

It sounds to me as if you are very strong and doing really well to do all the work you do. I bet that if you stop complaining to people around you, you may find you get more help and support.

Whatever you do, I wish you luck.

 

[BeauBlue]

Hi,

My partner was diagnosed with Fibromyalgia last year. The road to her diagnosis was quick to be fair, but the journey was far from easy.
I have had to watch my partner go from someone fit and active to being laid up in pain and various other symptoms associated with the condition. To say it has turned our lives upside down is an understatement.
I find it disgusting that you get diagnosed and sent on your way, no help, support or advice. We both work full time but due to this condition my partner has had a lot of time off work, financially we are seriously struggling and the prospect of her losing more time is inevitable.
I know I will never know how the pain, the fog and all aspects of fibro feel but I see what it does to her every single day and I hear about her pain, symptoms everyday. I work full time, I ensure I take care of her and the household, and to be honest its really hard as a partner as I have little to no support from family when I need to talk about things, instead I bottle it... How can I winge when I don't have fibro!!!
The thing is it's hard as a partner because I'm her constant support, I hear every day what pain my partner is in, what areas of the body are spasming, how awful the fatigue is... that is my constant and it's soul destroying to hear. As someone posted earlier, I can't fix her, I can only listen and take care of her as best I can. This on top of concerns for our future finances and everything inbetween is taking it's toll on me. The feeling of being overwhelmed and alone is hitting me hard lately, I'm tired mentally and physically but still trying to keep all the plates spinning. Unfortunately until fibro affects you or yours no one knows what impact it has on everything in your life.

 

[sunkacola]

I've noticed that when I vent about firbo to my partner, he starts to tune out....loses focus on me....other things become more interesting...... So I've kind of stopped talking about it...I really want him to understand what I am going through though. I like the idea of a 5-minute vent session. I think he might be able to hold his attention on me for five minutes while I talk fibro.....

Yeah, it works much better. And the other thing is, of course, that talking endlessly about it doesn't do us any good either. It is better to try to focus on positive things than to complain.