Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
I believe in saying please and thank you. I believe it is only right to respect people, even if they dont always warrant such respect. I believe being considerate to a stranger, is one of the greatest gifts you can give. So with saying all of this: I try my best to conduct my break-downs, crying spells, depressive lulls and fibro flare-ups as much in private as possible. To me its another way I show good manners because a weepy broke-down 20-something year old is really a kill joy.
But sometimes I cant be home or find a restroom stall when it all goes down. That is what happened last weekend. Being that I work during the week, I designate Saturday afternoon and Sunday morning as rest periods. But with it being Memorial Day weekend, we had extended family visiting, traveled to the beach and had a bbq. This of course was all too much for me to handle but my good manners and I could not say No to family, friends and special occasions.
So we fast forward to Saturday night (actually early Sunday morning), I am having a Fibro flare and sharing my room with a cousin. I cant go to sleep because 5 out of the 9 people in my house are still up and giving my heighten sense of hearing a run for its money. I just need sleep! but sleep does not come. There is nowhere in the house I can hide or find quiet. In frustration, I begin crying and looking for the keys to the car, which have been misplaced with the constant traffic of visitors. So I begin boo-hooing in the kitchen, pillow in hand, and waking people up. This makes things worse because now I have like 5 people asking me what is the matter? But I cant stop crying long enough to explain. All I can get out is I need the keys to the car.
So lets review what good manners got me: Half of my family thinking I am having a nervous break-down and want to take me to the ER, Im now extremely tired and in more pain (my throat and back hurt from crying), and I end up spending the night sleeping in the car with my Mom (because she thought I wouldnt be safe sleeping in the car alone at night).
In retrospective, its more respectful to just decline an invitation rather than wake people up 2 in the morning with your uncontrollable sobs. Even though I have had this realization, I know I will probably find myself in a similar situation again before I know it. When this happens, I will put the blame on my over-achieving/people-pleasing spirit, my so-called good manners and a dash of Fibro fog.
Just wanted to share.
But sometimes I cant be home or find a restroom stall when it all goes down. That is what happened last weekend. Being that I work during the week, I designate Saturday afternoon and Sunday morning as rest periods. But with it being Memorial Day weekend, we had extended family visiting, traveled to the beach and had a bbq. This of course was all too much for me to handle but my good manners and I could not say No to family, friends and special occasions.
So we fast forward to Saturday night (actually early Sunday morning), I am having a Fibro flare and sharing my room with a cousin. I cant go to sleep because 5 out of the 9 people in my house are still up and giving my heighten sense of hearing a run for its money. I just need sleep! but sleep does not come. There is nowhere in the house I can hide or find quiet. In frustration, I begin crying and looking for the keys to the car, which have been misplaced with the constant traffic of visitors. So I begin boo-hooing in the kitchen, pillow in hand, and waking people up. This makes things worse because now I have like 5 people asking me what is the matter? But I cant stop crying long enough to explain. All I can get out is I need the keys to the car.
So lets review what good manners got me: Half of my family thinking I am having a nervous break-down and want to take me to the ER, Im now extremely tired and in more pain (my throat and back hurt from crying), and I end up spending the night sleeping in the car with my Mom (because she thought I wouldnt be safe sleeping in the car alone at night).
In retrospective, its more respectful to just decline an invitation rather than wake people up 2 in the morning with your uncontrollable sobs. Even though I have had this realization, I know I will probably find myself in a similar situation again before I know it. When this happens, I will put the blame on my over-achieving/people-pleasing spirit, my so-called good manners and a dash of Fibro fog.
Just wanted to share.
I understand though. I've been there. If you ever need someone to vent to or virtually cry on I'm here... can't really go anywhere. I know it must be hard to be in your 2o's with this. I just turned 40 and people kept telling me I'm too young to be having all of these problems. That doesn't help me one bit.
Anyway, more hugs. Message me anytime. really.
If relatives question it, just print out some info on fibro, hand it to them, and explain that its a medical condition. Period, no apologies. That way, you get the rest you need, and can enjoy the family weekend.
HUGS from down south :)
HUGS!
I was diagnosed with breast cancer and my doctor instructed me to learn to say NO,and it had been great help when I got fibro and PMR later, I just do not do anything that will stress me, change my routine and comfort.
My family are very understanding and my friends have learn to accept my rules.
I have not had not a single corporate party at home and I am glad that I learned to look after myself first.
One can not expect that other people that do not have pain to understand.
With pain comes fustration and anger, I avoid anybody or anything that can increase my stress or that is negative.
One of the hardest lessons I've ever had to learn is that what I don't ask for, I won't get. People will generally give you what you need if you let them know what that is. If your family members want to stay up late, they can do so, but you need to let them know it's critically important that you get good sleep. It's not a major inconvenience for people to use their "indoor voice" when others are trying to rest.
Manners, consideration, all of that run both ways. You have a right to expect the same of others that you are giving, and asking for what you need is actually considerate, because they really don't want to cause you distress.
Keep enjoying your life and your family. Just with a bit less people pleasing and a bit more assertiveness.
I think that you can still go to some of those functions and events and make sure, like CajunTiger said, to have somewhere you can go for just you even if means that you have to leave them when it is time to sleep IF that is an option.
I totally agree with Peace that you can say 'no' sometimes without having to force yourself to say 'no' every time. I think it is very important that you still let yourself enjoy times with family and friends when you can otherwise it will lead to a very depressed lifestyle. I have experienced it once or twice when trying to just distance myself from my family and friends.
I tried to hide my condition from everyone and when didn't work, I just told everyone that I was doing so much better and not to worry. Now I am in the process of filing for disability and some of the people that could have and WOULD have supported me through this rough time, had no idea how bad I was getting. I told myself that my family wouldn't be understanding and would either give me a hard time and call me a lazy hypochondriac or they would just throw me a pity party refuse to treat me normally. I was wrong and I am finally accepting help.
You are considerate to them and they need to be considerate to you. If you let them know what you need and they aren't then you will have to stand up to them and make them be considerate.
I decline a lot of invitations, especially long outings or overnight trips. I have learned my limits and I accept them.
I'm sorry you had to go through all of that!
Hugs, Rose
I am not a people pleaser anymore. My family and friends know I can not be a hostess anymore, so we have gatherings at other peoples houses or meet at a restuarant.
Donna Jean - I was diagnosed in my 30s and I heard that alot - you are too young to be so sick - like a person can help how old they are when they get an illness - my lawyer said it to me three times while we were waiting at the courthouse to see the judge, because it can be harder to get disability if you are younger according to him anyways - I finally told him I did not want to hear that from again and that I cant change how old I am.- I was stressed enough before the hearing
Since then, when there is an occassion to go away with anyone, I will book my own room. I need quiet and my sleep.
Family and friends think I am a bit strange, but my sleep is more important to me than their opinions.
Hugs to you
My younger daughter is getting married in October and I have started worrying about all that will entail. I know it will be ok, but I know I have limitations, and worry about what all of this will do to me.
Enough rambling. I just meant to say I understand.
Hugs
One day of rest and I hope to see everyone that evening. Just can't travel all day and then go out. Not possible. Know my limits. Will probably leave the party early, did the same last time. Need my zanex and my air conditioned room. The beach and lots of relatives makes for a nightmare to me. No sun, no noise, I've been sick 30 years and stick up for myself now. Love and learn, Abby