need to vent

[pandoralys]

Glad there's a section for it, I really need to vent
I got diagnosed around two months ago, and my brother (who's my age btw) wasn't there when I had the diagnosis (he and I live in separate countries abroad). For context, in the past my parents always told our relatives or even family friends about my health news for other significant things, often before I did
Anyway today I was on the phone with my mum and asked in my brother knew about my fibro diagnosis, since I never got to tell him (I had a hard time talking about it the past few weeks, cuz the diagnosis was a little shock) and he just came home recently.
She said no it wouldn't speak out to him, basically what's the use. That hurt me, like a lot. It's a lifelong thing that impacts my daily life a lot sometimes; even if the name fibro doesn't speak to him he could still search it on the web or something. Being unknown doesn't make it less important than if I had some widely known disease. That made me think my mum does not realise at all how big of a deal it is for me; maybe it's my fault cuz I don't like talking about it, but she also never asks if I'm alright on that aspect...

 

[sunkacola]

@pandoralys , I can understand your frustration. Often people with fibromyalgia report feeling as if they are not taken seriously, or as if people brush them off or don't want to take the time to hear or understand.

You didn't ask for advice, so I hope it's OK for me to say that maybe it would help to sit down with your mum on the phone and have a visit with her, explaining how fibro affects your life, so that she can better understand what it means to you. And maybe it would also be appropriate for you to call your brother yourself and let him know.

I find that if I am upfront with people, especially if I give them just the facts and avoid getting into the emotional aspects of it, and keep it very brief (like 5 minutes or so), people will listen and take it in. then, I let that go and wait to say more only if they ask me questions.

As for "what's the use", it seems to me the use is that you want your relatives to know what's going on with you and you could use a little support. It's possible that if you just give them some bare bones facts about how it affects your life, you will get what you are missing. I hope so!

 

[pandoralys]

Should have said it in the post, but I'm very much open to comments or advice !
I'm going back home soon for a few months anyway, so yeah maybe I should give her a short briefing on it. I'll keep in mind your 5min idea, it sounds like a good compromise.
I find that most of the time I'd rather give out the name of the disease to people like friends and let them educate themselves, I'm not v fond of having to expand on details unless I have to and it's more comfortable that way.
@sunkacola But how do you keep the emotional aspects out of it if I may ask ? I feel like if I start talking about how it affects my life it gets in the emotional category

 

[sunkacola]

What I really mean is I don't get emotional in the telling, and or dwell on the emotional aspects of it. I think that to go into emotions is to risk sounding self-pitying. Now, this is how it is for me. This is how I go about it, not saying everyone or anyone else should do what I do, but I find that it's a lot more likely that a person will glaze over their eyes or get uncomfortable if emotions are mentioned much at all. Most people really have no idea how to deal with other people's emotions. Especially if it's about something like fibromyalgia which they don't begin to understand.

So, for instance, I might say something like, "I cannot hike the mountains any more, and since that was my favorite thing to do all my life, that has been hard for me". But then I stop. And go on to something else. No more needs to be said.

Or, I could say, "I am not able to get as much done in a day as I used to be able to, and sometimes that is frustrating." And stop there.

If they feel comfortable dealing with the emotional impact, they might address that. But if they don't say anything, or ask me some other kind of question, then I know that it would be best to stay away from any mention of emotions.

Mostly if I don't know the person well I just say, "I have a chronic pain condition". Period. I don't say anything more unless they ask. Then, I only answer the question they ask, sometimes only with a yes or no, and I never elaborate or go on about it. The one thing most people are wary of and don't like is if someone goes on and on about their physical or health problems.

As I say, this is just coming from my perspective and my experience. It's not directions on how anyone else "should" do things. That needs to be figured out by each individual, and depends on to whom you are talking as well.

 

[pandoralys]

@sunkacola definitely very useful information to keep in mind, thank you for sharing !! The self pitying thing and dealing w emotion are v true from my pov as well

 

[BlueBells]

@pandoralys

I either keep quiet and other people can think what they like.

However, if I am forced to interact, like today I needed to discuss stuff, and I said, "I have fibro, and it keeps switching my brain off". I struggled to make sense, I think I sort of did, but that's the best I could do.

That's pretty much what I've come down to. It's something that can't be understood by those who haven't "been there, done that" , so it's just hard to comprehend.

They don't understand the "good one day, off the planet the next" issues, either.

I'm off the planet today

 

[SBee]

hi @pandoralys, I'm very much like @sunkacola in how I approach speaking about my health. Whilst those close to me can see exactly how it impacts me, after seeing too many blank faces as I try to describe things as they are, I mostly say much the same - I have chronic health conditions. If they ask more I will try to explain, but mostly I keep it simple. Most understand the arthritis ( well, the osteoarthritis but never the rheumatoid!) but few understand the full impact on day To day living with these, let alone fibromyalgia.

To be fair, I didn't know anything about fibromyalgia myself until a physiotherapist suggested it, and a year later he was proved right.

Brain fog wise is hard t explain but can be very obvious - I get this daily, but as I am mostly at home it's just my husband that sees this, where so end up almost stuttering to get to ' reach ' for a word. So frustrating A few friends have seen it, and are kind, but When it happens in a public place or in front of strangers I find it embarrassing and distressing.

@BlueBells in case you forget to give yourself a hug today, here's one from me.

 

[pandoralys]

@BlueBells yeah I get it, which is why it's so frustrating sometimes- not being understood-
I think I don't have enough distance yet to simply keep quiet but anyway
big hug to you, it's no fun being off

@SBee I'm gonna keep in mind to keep things simple, probably best for everyone that way. Is there nothing to do to get rid of the brain fog ? That seems like a real pain
On my part it's just catching myself abnormally forgetting what I said or words from my native language, makes it hard to speak w my family haha

 

[sunkacola]

@BlueBells yeah I get it, which is why it's so frustrating sometimes- not being understood-
I think I don't have enough distance yet to simply keep quiet but anyway
big hug to you, it's no fun being off

@SBee I'm gonna keep in mind to keep things simple, probably best for everyone that way. Is there nothing to do to get rid of the brain fog ? That seems like a real pain
On my part it's just catching myself abnormally forgetting what I said or words from my native language, makes it hard to speak w my family haha

So far, no one has come up with anything that clears up the brain fog. but there are a lot of things you can do to help manage how your day goes, while dealing with the fog.

And you can learn very clever things to say to people when it interferes with your day or your interactions. I love @BlueBells saying "it keeps switching my brain off". that's a good one, because it can be said in a humorous way. Finding humor in it is good for you and also good for your interactions with other people. People love it if they are given a change to smile or laugh a bit with you about your disability. Note I say laugh with, not at. If you can find some humor in it, others can too and it puts everyone more at ease. If they are more at ease they will be more open to understanding your situation as well.

Now, I'm not saying it's our job to put others at ease and if you don't feel like it or just don't have the battery power for it some day that's fine too. But it can help you when you are able to do that.

As for being understood, or not being and feeling frustrated as a result............What helped me the most of all was to completely give up and let go of the need or even desire to be understood. It won't happen anyway because unless someone has experienced it they will not understand. Instead, what I hope for and ask for is respect. A person doesn't have to even want to know about fibromyalgia. They don't have to help. They just have to respect my needs and not give me any hard time about it if, for instance, I have to cancel plans. If they cannot be respectful in that way then I cut them from my life.

 

[30 plus years]

Please reassure me I'm not insane. My husband, who's great in helping me, usually trying to understand the best he can, is now in a position to need my help because of a fall. He's not paralyzed by any means but I've had to step up to the plate in almost everything. Don't get me wrong, I want to and am trying to help him and even have friends helping, but nevertheless I have many limitations, one of which is I'm almost blind.

Well it's only been two days and my back is absolutely on fire, mainly from just getting up and down, bending to do laundry or even getting into a drawer, all the "little" stuff that adds up. My poor body is not used to being so busy. Even answering phone calls and texts is stressing me out and tries my neck and wrist muscles and who knows what else.

I've been taking NSAIDS, Tylenol and a muscle relaxer at night in addition to my regular daily meds and nothing is touching it. I ice it as much as I can and use a heating pad and have even gone in hot tub and the pain is just piercing. But you know what bothers me the most, even over the pain, if that's possible? NOBODY GETS IT. When I try to express how much my back is killing me, it's just like "Oh, you're tired. Rest and it will go away."
I mean nobody actually has said that but they might as well have, because a lot of people say their back hurts, right? But they don't understand I can hardly move, and it doesn't go away. Not after meds, ice or sleep.
(You guys know, right??) I finally decided, after a couple hours of company for lunch (they brought it) I would try this instead. "I need to lay down."
And went to bed and took a nap. It worked, but I still woke up with the pain, and it still continues.

All these years and it still floors me that NO ONE UNDERSTANDS, and im SO GLAD FOR THIS FORUM. That's my rant for now.

 

[Ian waxman]

Glad there's a section for it, I really need to vent
I got diagnosed around two months ago, and my brother (who's my age btw) wasn't there when I had the diagnosis (he and I live in separate countries abroad). For context, in the past my parents always told our relatives or even family friends about my health news for other significant things, often before I did
Anyway today I was on the phone with my mum and asked in my brother knew about my fibro diagnosis, since I never got to tell him (I had a hard time talking about it the past few weeks, cuz the diagnosis was a little shock) and he just came home recently.
She said no it wouldn't speak out to him, basically what's the use. That hurt me, like a lot. It's a lifelong thing that impacts my daily life a lot sometimes; even if the name fibro doesn't speak to him he could still search it on the web or something. Being unknown doesn't make it less important than if I had some widely known disease. That made me think my mum does not realise at all how big of a deal it is for me; maybe it's my fault cuz I don't like talking about it, but she also never asks if I'm alright on that aspect...

I’ve got a mother exactly like that.she never takes any notice of my pain and is always asking me to do jobs around the house.i’ve got my own house,wife,kids,though they’ve got their own houses.i’ve had it for 25 years and she never thinks I’m in pain.just are you doing my jobs today.i tell her I feel crap and she then ignores me and I mean ignores me,maybe for months,years.she’s very cold and bitter towards me and it won’t change.its a struggle making people understand.we’re the silent sufferers.hope you’re ok we are all here for you.its a big community!!

 

[Ian waxman]

hi @pandoralys, I'm very much like @sunkacola in how I approach speaking about my health. Whilst those close to me can see exactly how it impacts me, after seeing too many blank faces as I try to describe things as they are, I mostly say much the same - I have chronic health conditions. If they ask more I will try to explain, but mostly I keep it simple. Most understand the arthritis ( well, the osteoarthritis but never the rheumatoid!) but few understand the full impact on day To day living with these, let alone fibromyalgia.

To be fair, I didn't know anything about fibromyalgia myself until a physiotherapist suggested it, and a year later he was proved right.

Brain fog wise is hard t explain but can be very obvious - I get this daily, but as I am mostly at home it's just my husband that sees this, where so end up almost stuttering to get to ' reach ' for a word. So frustrating A few friends have seen it, and are kind, but When it happens in a public place or in front of strangers I find it embarrassing and distressing.

@BlueBells in case you forget to give yourself a hug today, here's one from me.

It’s not worth telling people most don’t understand.its a disease of the silent.the medical authority were I live have set up a pain group.where you can talk to others and do activities linked to your abilities

 

[SBee]

Hello @30 plus years

I can empathise totally with you. I'm sorry your pain levels and the difficulty in day to day living has increased so much. My husband also tries to understand what it feels like for people like us, and works so hard to take the physical pressure off me.

But no one can understand it unless they are unfortunate to suffer with chronic pain and fatigue. Its the bloody relentless side that gets me. it never ever stops. I too get the ' well, have a sit down and rest and you'll feel better ' and of course we DON'T. It doesnt work like that. Fibro 's not very forgiving @sunkacola wrote a very descriptive post I think a few years back about the total crushing effect of fatigue, I should try to find it again.

You do well to have friends popping in to try to help. Maybe just try to appreciate their appearance and as hard as it is,dont waste your precious energy trying to alter others opinions. Rest every tiny time you can. Am sure your husband values your help as he needs it atm.

And always vent here as much as you need. This part of the forum is massively essential to us all. Say what you need when you need to.

I wish you and your husband well.

 

[sunkacola]

I have found that my life is much easier since I completely and utterly gave up any thought that anyone would ever understand.
They won't.

The best that I have found I can ever hope for from anyone is simply that they will believe me.
And sometimes I don't get that, in which case I will settle for just not doing or saying things that make my life worse.
If I don't even get that, then that person cannot be in my life any more. Period.

But trying to make people understand, or hoping they will, or expecting them to, will always and only end up with being frustrated, unhappy, resentful, and other emotions that will only make the fibromyalgia symptoms worse.

 

[30 plus years]

I have found that my life is much easier since I completely and utterly gave up any thought that anyone would ever understand.
They won't.

The best that I have found I can ever hope for from anyone is simply that they will believe me.
And sometimes I don't get that, in which case I will settle for just not doing or saying things that make my life worse.
If I don't even get that, then that person cannot be in my life any more. Period.

But trying to make people understand, or hoping they will, or expecting them to, will always and only end up with being frustrated, unhappy, resentful, and other emotions that will only make the fibromyalgia symptoms worse.

I was hoping to get advice from you. What you say makes a lot of sense. And thanks for the other responses and well-wishes too.

I'm not really trying to make people understand, at least not by words. But you're right, even hoping or expecting they will, disappoints too. I thought it looked pretty obvious. Do I get points for excusing myself though? LOL
I gotta stop it. Sometimes it feels like we're in an entirely different world though, doesn't it? I'm so jealous of anybody who takes some ibuprofen and is pain-free!! And when they talk about their pain experiences I'm thinking "But you can take something and it (usually) goes away. What's the big deal?" I can't help it. I should be glad they can get relief. Shame on me!

Anyway, it's been 4 days, my husband is fine and moving better than I am. He stopped taking muscle relaxers. We're both so thankful his injuries weren't worse. I'm still reeling from it all and the sad thing is I was before his accident. And I probably will be for awhile to come!! In fact, I seriously cannot remember when this super long flare ever subsided. I really need a break!! Ranting again, I know. It's been a long haul.

P.S. Just read post about effects of sleep deprivation. Spot on!!