New member - Aviella

[Aviella]

Hi, just call me Aviella. I’m just posting to introduce myself and say thanks for creating a place where others understand. It’s nice to know others understand without having to explain it all / expecting me to justify life experience with fibromyalgia.

I’ve been living with fibromyalgia for over a decade. So I’m sure many here understand the then and now and gruelling process of it all. I’m just hoping to be around more people who get it.

 

[SBee]

Hell @Aviella welcome to you.
You have definitely come to the right place to be surrounded by people who really do understand the complexities of living with fibromyalgia.
I am sure after living with fibro for so long you have found ways to help manage it a little and live as best you can, but am sure you will still find others experiences and advice will help further- and great support too.

 

[sunkacola]

Welcome to the forum, @Aviella . You have definitely found a place where others understand what it is like and are supportive. I hope this forum turns out to be useful for you.

 

[Aviella]

Thanks, for the nice welcome. It’s just difficult being around people feeling like an oddball. I had the flu in November and it took a long time to go back to my level of functioning. I was so behind with everything I wasn’t pacing properly and ended up crashing badly end of December and still feel exhausted. Hard not to feel guilty for doing so little.

 

[Aviella]

Hell @Aviella welcome to you.
You have definitely come to the right place to be surrounded by people who really do understand the complexities of living with fibromyalgia.
I am sure after living with fibro for so long you have found ways to help manage it a little and live as best you can, but am sure you will still find others experiences and advice will help further- and great support too.

Thanks. Good to be here.

 

[sunkacola]

Thanks, for the nice welcome. It’s just difficult being around people feeling like an oddball. I had the flu in November and it took a long time to go back to my level of functioning. I was so behind with everything I wasn’t pacing properly and ended up crashing badly end of December and still feel exhausted. Hard not to feel guilty for doing so little.

It is hard not to feel bad about doing very little. The fact is most of us are raised in a society that values doing things and "being productive" over all else, it seems. People seem to think if they are not "busy" they are not important enough or doing enough. This is very thoroughly ingrained in the fabric of most modern societies, in most places in the world it seems. If a person is referred to as "successful" it means they make a lot of money. And along with that is the assumption that they are productive in society, have very busy lives, and so on.

One thing that having fibromyalgia has made me think about is the validity of all of those constructs, concepts, and attitudes in society. What a person does is more valued, it seems, than what a person is. Not being able to do all of the things that we used to do makes us feel, because of these attitudes that we are taught and that surround us, as if we have less value.

I have been thinking a lot about different ways of viewing things. That what kind of person I am may be actually more important than what I manage to accomplish in a day.

 

[Aviella]

Yes, I hear you. The real issue for me is how to stay strong emotionally and confident in my value around people who don’t understand or consider the very things you’ve described. I guess some days are more difficult than other days.

 

[sunkacola]

Yes, I hear you. The real issue for me is how to stay strong emotionally and confident in my value around people who don’t understand or consider the very things you’ve described. I guess some days are more difficult than other days.

I think the strategy for that depends on the relationship. If the person is very close to you or in your daily life, then a frank sit-down talk about your situation might help. Asking for them not to understand, exactly, because they really cannot understand what this is like for you. But asking them to listen to you, believe what you say, and just not to do the things that make life more difficult for you. Not to give you a hard time for what you are not able to do on a given day, for instance. To give you the same consideration they would give to someone who had any other disability, like not asking a blind person to tell them what that is across the room.

People who are not close to you are a different story. I have found that sometimes it's necessary simply to cull certain people from my life if they are not able to accept the way things are for me or if they persist in doing things that make it worse. And some thickening of the skin is a good idea as well....making sure that you know your own value and don't let someone else's opinion or comment bring you down.