I hate to be a downer but I need some support. Today has just been a physically, emotionally, mentally, everything exhausting day. I woke up around noon, my family asked why in the world I slept in so late (seriously?), then sat to watch some Christmas themed movies with them. Just sitting there was absolute agony for my body, I sat through about an hour and said I apologize to everyone but I need to go lie down. I got the feeling that they were all annoyed with me, wondering how sitting was so exhausting. They will never understand.
So I went and lied down for quite a long time, and even that didn't seem to help.
My dad has a broken back and is constantly saying how much pain he is in, this hurts, that hurts, its horrible pain, etc. I really do feel bad for him. I have grown up my whole life knowing him to have a horrible back, its not his fault. But sometimes it frustrates me because when I try to say how much pain I am in or that I just want to break down and cry (very unusual for me to let myself get to that point or admit it), it immediately becomes a game of I'm in more pain than you. It is very frustrating and makes me feel like I shouldn't even talk about my pain at all.
So I'm venting to people who I know truly understand what I'm going through on a daily, hourly basis. Please don't misunderstand and think that I don't feel bad for my dad, because I truly do and I love him a lot. I am just sick of feeling like I'm screaming and no one can hear me.
So sorry to hear you have had a bad day. Clearly your family don't truly understand this condition. Have you tried giving them some information which is on the internet, can be easier than trying to explain. 2 good articles spring to mind, but I can't remember the links! One is a letter from a fibro sufferer, then an article about chronic pain sufferer, and I've just remembered there is one about the spoon theory. Hope this might help if you show to your family. It is not easy for others to understand, sometimes I think you have to accept that.
my family knows about fibro and I have tried to explain and show them different articles on it at times. I think they try they're best to be understanding but sometimes I just feel so isolated and alone, like they really don't get it. I am trying to have more grace because I can only imagine how hard it must be for them to watch me walking through this on a daily basis and not really be able to do anything to help fix it. I Just want them to hear me out more, but I definitely know that there are two sides to every story. Thanks for taking the time to read and give your advice, I really do appreciate the support. :)
I'm sorry you are going through that and are having a difficult time. I completely understand that you feel bad for your dad and I'm sorry your family isn't understanding. I can only imagine how frustrating that would be to play the "I'm in more pain than you" game. That would drive me crazy! Often times, it is very difficult for people to understand our pain and exhaustion because we don't have an illness that you can see. There is no pinpoint thing wrong with our bodies like a broken back, we have pain all over that can't be explained by one cause or another. When I was in Grad school, I wrote a paper on invisible illness and had my family read about the stigma, isolation and misunderstanding that can come from having an invisible illness. It is one of the hardest things to deal with because if people can't see it, they can more easily dismiss it and pretend like it isn't there. Please know that you are not alone and you are in my thoughts.
Hi, Ahava. I just thought to add that sometimes family members are just too close to us and the situation to be of the best help in this way. You may want to consider private counselling as well. I have found it helps to work through these isolation feelings with someone who is able to remain objective and focus entirely on you.
I know what you are going through and it's very frustrating. You do not really feel as though the person is listening or even cares what you are feeling. My mother does the same thing and half the time she seems really annoyed if I say anything. It is really hard to impress upon others that the exhausting fatigue added to the pain makes it even worse. My mother will complain about her pain from a broken leg from 25 years ago. I feel bad for her but I do not understand that if she is in so much pain then how can she spend 2 hours in a grocery store. I can spend 20 minutes tops and can only handle a few lightly packed bags. No matter how many times I ask her to request the baggers to pack lightly she does not. When I am in pain I simply cannot do a thing. It's absolutely crippling even standing for longer than 5 minutes is torture. You are not alone in feeling like no one hears you.
I hear you and I completely understand. I have had similar issues with my family. Until my sister was in constant pain from migraines. Not that I want her to be in pain, but she never could get where I was coming from. You are always welcome to vent here. I am very lucky though because my husband is wonderful my children grew up with me suffering with the pain and exhaustion, now that they are grown I think they understand better. Sorry if I seem a little jumbled brain works funny. lol
Thanx for your reply. There is some great advice from others on here. My family are very supportive and do try to understand, and say they do! But then they say something and I know they truly don't.. Just keep on doing what you are doing, and what works for you.
Part of the reason I joined this group is so I could stop putting on the fake smile for a while and be honest about how bad it is, so don’t worry about being a downer here,
lol. I have a mom who is like that with competition. I have migraines too, but now that I have this , at least a migraine is centralized . This syndrome is random pain and terrible fatigue. And the mental part of it is scary. I am in the fibro fog half the day I can’t remember where I just placed something or what day it is. I have trouble remembering words and my muscles are weak. I am taking supplements but they only do so much :(. I think the frustrating part is all the advice well meaning people like to say. Easy for them to tell us to be positive . The pain itself brings tears to my eyes at work when I try to stand too long …
Pat yourself on the back for staying at your job. I hope you feel good when you get the paycheck. I read a little about fibrofog and many do say that it is top on the list of frustrating symptoms.
Sorry to hear that you were having such a rough time of it. I agree sometimes family members are too close to give us the support we need, and sometimes they feel so frustrated in not being able to help us that their frustration comes out as anger or judgment. It is all so unfortunate. I am glad you have us, ones who really understand and you can share what you are experiencing with. Sending you hugs and hoping today is a better day.
I had to get a wheelchair at the airport and my daughter couldn't understand and felt like I was over reacting but I could not get through the airport on my own. I get the well you really don't know what real pain is speech a lot.... yet it hurts to drive and I get up every morning stiff and hurting. I have to slowly walk it out but the pain never goes away. I hate the speeches of its in your head, etc.
Thank you everyone for taking the time to reply, I appreciate and empathize with all of you.
It is so hard to get by from day to day let alone feel like we are being judged because we simply cannot function the way healthy people can. I remember while I was still feeling well enough to attend college, my professor had an auto immune disorder also, and when I told her about my fibromyalgia she asked me to do a presentation about it. Unfortunately, my pain and fog and fatigue were so horrible that semester I couldn't study or focus, I was falling behind on everything and it felt like my work load was crushing me so I had to withdraw. To this day I wish that I had, had enough strength to have done that presentation, I don't know if it would have made a difference but I wish I could have. Anything that helps spread fibromyalgia awareness is golden in my book.
I really do appreciate everyone sharing their stories and experiences with me on here, it truly does make a difference to me. It is nice to know that I have a huge family on here that truly understands what I walk through and struggle with on a daily basis. This disease can make me feel so isolated sometimes, but just knowing that I can come on here and vent when I feel at my wit's end is truly a huge blessing.
Thank you all so much and please anyone feel free to vent to me also anytime!
Blessings, prayers and a Merry Christmas to everyone!