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Isn't this sad!
14 Replies
ibritz - August 17

There hasn't been a post here in August! Shows how much our friends and family really want to know about FM.


Oksana - February 24


My sister and her husband say that I should have no problem finding work of any kind. I feel so limited in my life and I know that I should be grateful to be alive as I was hit and dragged by a vehicle. She says its all in the mind. Unfortunately you can't measure pain. For a person to understand someones malady it should either be visual or the person on the outside should experience the same. I don't wish this on anyone. We just have to take care of ourselves. If someone doesn't want to support or believe me it's not my problem but theirs. Sometimes easier said than done. Sure it is sad.


axxie - February 25

People don't have compassion and aren't being nice anymore. If they can't visualize it, you can't believe they will understand.

I learned a long time ago, you have a broken leg you have cast, talk to them you broke your leg in a skiing accident, people are attracted to you.

Tell them you have cancer, and they run away from you, afraid they might catch it. Or they'll say something stupid like, I know you, your tough you'll survive...... blah blah blah......

Tell them you have FMS, say what again, what's that, or just pull yourself together and you'll be ok. Yeah right.... They have no compassion, because life is way to fast, we have pills for an infection, we have a cast for broken bones. Talk to them about a mysterious illness like fibro and they go say what again, isn't that a fake illness. You just need a vacation or you just need to pull yourself up and get going.
That is the nature of life, and we got there, by not having any compassion and blaming everyone for everything and what we don't understand because it has not capted an audience on television with a new breakthrough, then people don't understand it, and don't want to understand it. - February 28

I know how that feels, I have fibro and chronic fitique for 25 yrs. I had to quite the job that i loved. Like you my friends and some family members have not been compassionate.
They don't understand why I can't go out with them when I am not feeling well, why I don't work a part time job. If I push myself to do things I will feel better.
So now after all these years and as my condition is worsening I just tell them they need to get on the internet and look up the Fibromialgia Website and read for them self what this condition can do to your health and life.

I am sorry for you, myself and all of us that suffer from this condition.


diddle - February 29

Hi yes its an awful thing to have i dont tell many people you usually get oh you look ok !!! yeah well i dont feel it after being up all night tossing turning laying on more sqyashy soft things than a funfair stall has and still getting pain after you have taken your usual drugs for the day i stock more tablets than boots(slight exaggeration there) but you know what i mean unless you have it you cant possibly understand it, do they really think we dont want to go out to all the things we are invited too????? yes ok i will have the odd dance at a do but oh dear you wait till later or the next day boy do i pay for that agadoo move i done , oh and as for alcohol no thanks what with that and all the drugs i would be in a and e for a stomach pump or dead of an overdose!!!!!. I used to walk miles with my dog and partner 4/5 hour walks lol now it 5/15 min and thats me done thanks, but i do try to say there is always someone worse off than me and i do keep posotive you have to or you would be in trouble. Some days i do feel sorry for myself and thats ok too but these sites are a god send you all know exactly how it is and i have founfd out so much on these like some things i have had and thought it in my mind on here you seee others with the same symptons so its good to be in touch with people. you all take care and love and soft hugs Diddle xxxx


bluesbrrd - April 7

People can be clueless, and/or cruel. Really, anyone who tells you "it's all in your mind," or that it's easy to find a job when you have a serious disability, is an IDIOT! It's abusive behavior to treat you like there's no reason you can't do what everyone else does! Would they tell a quadroplegic to just quit whining and get out there and enjoy the square dance like everyone else? Of course not! You just either have to tell them they are being ignorant, or you have to ignore them! Find people who "get" it! I'm not saying that's easy, but it's better than hanging with people who are being cruel. There are other people who have relatives with fibro, and they understand. Your rheumatologist will understand, and your therapist will understand! And here we will understand. So F*CK 'em if they don't understand, pardon my french! Life is too short to waste trying to explain yourself to idiots.

My mother understood. My boyfriend understood, but still left me after ten years of living together because he was too stressed out. I wish he hadn't been, but he just wasn't able to hack it! My younger sister decided that I was an "alcoholic," and hasn't spoken to me for five years. She is just freaking nuts! My other sister is finally coming around after five years of having her own problems, and letting my little sister (who is a psychiatrist!!) manipulate her into shunning me too! The last time I saw my little brother, he told me "you would be fine if you just got off all the drugs!!" They're all idiots, and I can't do a darn thing about it!

It does hurt, though, when people in your own family act like you don't even exist! I haven't seen my niece or my three nephews in over five years, because I can't travel, and they can't be bothered to visit me. What are you going to do?

If it was my fault, or I was a difficult person, I would have to take responsibility for that. But I have always been loving and kind to all of them. I'm the oldest, and I tried to take care of them growing up. I send Christmas and bithday gifts that my younger sister doesn't even bother to acknowledge! But regardless of how dysfunctional and awful they are, I am not going to have my nephews grow up and think I don't care about them!

It is very hard sometimes, but you have to realize that, as frustrating and unfair as it is, it is not your fault!


bluesbrrd - April 7

Oh gosh, the nights flipping and flopping around like a flounder, trying to get into a position where EVERY part of your body will relax! They cannot imagine what torture that is! But your description was very funny and it made me laugh! So thank you for that!!


Jocelyn - April 8


I am so saddened to hear that your family is so misunderstanding of what you are going through. I give you so much credit for continuing to reach out to your nephews, that alone, shows what a wonderful person you are.

I'm glad you have your mother's understanding, that is always a help. My mother had Lupus, another disease that you can look good and feel awful. She was one of my biggest supporters, unfortunately, I lost her almost two years ago. I don't know how old you are, but I count my blessings that I was able to bring up my two kids and that this disease didn't hit me real hard until my 40s, I am now 56. My husband has been supportive, but it took time for him to understand how bad things really are because I managed for years to get through it. Things change and I am no longer who I was, so everyone needs to understand and I don't care what anyone thinks. If I can't do something that others think I should be doing, that is their problem. I do what I feel I can do and ignore everyone else. I hope your Mom is able to help support you and stand up for you during this difficult time.

Try to stay well.


bluesbrrd - April 10

I really don't think people understand, unless they also have had chronic pain or a serious health problem at some point in their lives! My last boyfriend had trigeminal neuralgia, and he also worked with developmentally disabled adults, so he got it. I think it was too much for him to do that all day, and then come home to another disabled person! I can't keep up with a healthy person, so I don't even try!

I guess I wasn't clear about this, I lost my mom a year ago to lung cancer. She was 78, and went fast, thankfully. I moved down here 3 years ago so I could hang out with her, and we had two good years together. The anniversary of her passing is only a month away, and I suddenly find I am greiving and missing her like crazy. It hadn't really happened before, because I felt a lot of peace about having spent that time with her. She could be difficult, but we did have a good time together drinking wine, watching movies, and eating her wonderful cooking - just a couple of couch potatoes! I wonder what I am still doing here - I don't know whether to stay, or to move to where the rest of my family is. I'll probably have to at some point, but uprooting my entire support system is no small thing!

But I'll never get to know those kids if I'm not where they are! I just found out a few months ago that my closest sister had been dealing with a severely alcoholic husband. She works and travels a lot, and he's home with the kids. But the kids are teenagers now! So she had been angry and not herself for years, but we started talking when my mom got sick, and patched things up. They had gone to counseling, but he was doing NOTHING to help her, and then he got arrested at a local bar, for being drunk and obnoxious, the week before Christmas!! She was seriously thinking about divorce, so I sent her a couple books which her son opened, and the result was an honest dialogue finally began in the family. I told her those kids were old enough to know the deal - 14 and 17!! She sent the books back, but thanked me for getting them all talking. Apparently he's quit and now going to therapy.

He's a decent guy and a good dad - he wasn't always an alcoholic! I've known him almost 20 years now. His dad AND brother both died from drinking, so he had to deal with that. She's the person who's been in my life longer than anyone else, at this point, she's just 2 years younger. She's told me a couple of times that she started to realize how angry she was - at her husband, mainly, but it came into our relationship, too, and we had always been close. She's the one person who would be there for me if I really needed it, SHe had to shoulder the burden of my mom's health problems along with her own family, and she was spread very thin for a while. I saw her a year ago, for about 20 minutes. She's been saying she wants to come visit me, but I'l believe it when I see it - she's so busy! I hope her husband is helping out now, what a situation!


bluesbrrd - April 10

I also meant to tell you that I am sorry for the loss of your mother! I am glad that I don't have lupus, that's very difficult! I am also 55 going on 56 in August. I've had fibromyalgia for 25 years. After being very sick the first 2 years, I got better and was able to work for 10 years. But then I got endometriosis and had severe abdominal and pelvic pain for the next five years, and four surgeries during that time. That, the surgeries, and the hormone treaments made my fibro MUCH worse, and after I had the final one, a hysterectomy, I had a severe relapse. I am better now, but my mom had bad arthritis in her hips and knees and I am concerned about that coming on. I probably have osteoporosis, but I haven't had the tests.

Isn't getting old fun??


Jocelyn - April 10

I am sorry to hear of your mothers loss too. It will be two years this July for my Mom and I still miss her so much. She was such a huge part of my life. I am glad you had some good times with your mother before she passed, those memories will keep you going. Grieving is a funny thing, it can hit you at the most unsuspecting times or even around the anniversary of ones death. To this day, I feel as though my mother is going to walk right through my door, it seems like yesterday and she has not left.

I have two brothers, both smoke and are alcoholics. One is trying to quit because of other inherited heart and circulation problems. My oldest brother isn't trying at all. I never drank, nor smoked and I believe I am the sickest of them all! My mother never drank or smoked either! I tried to lead a very healthy life when I was young. I would have never thought I would be in this situation today. I loved to run and play, ride horses and do everything I could do. It is odd how things worked out. I can't say my older brother is in good health, he has lots of blockages and had a stroke in his 40's. Stents put in recently and refuses to have regular check ups. Geez, I am at least trying to get better, even if I can't! It drives me crazy, but my mother left me with two brothers, no sisters. My younger brother and I have a good relationship. he is the one trying to quit smoking and then I hope will cut down his drinking. He is a good person. My older brother is a good person, but I don't see too much. Oh moves on.

You have had a lot of other health problems along the way. It seems as though people with Fibro tend to have multiple illnesses. I have Sjogren's which is listed as a disease that many children of mothers with Lupus can get. How lucky I am. I have server allergies to the outside and things I eat. So...eating is a challenge too.


Jocelyn - April 10

Oh yes....getting old is so much fun, I can't wait until I get to my golden years, this has been so much fun!


bluesbrrd - April 11

I want to thank everyone for welcoming me into this community! It means a lot to me, because you are the only people who understand! I have had a rough week. A month ago I tried to go to the grocery store a block away, because I was sick of cabs canceling on me. I had a headlight out, and got 2 tickets, for an expired driver's license and no state registration on my car. I had trouble getting my license renewed, license without a birth certificate, and I couldn't get a birth certificate without a valid driver's license! Catch 22! I just gave up, and stopped driving! My car was in the shop for THREE MONTHS! Have you ever heard of such a thing? it's a 1989, and I didn't even expect to get it back at that point! I thought it was going to be junked, so I didn't bother to update the registration!

My court date is tomorrow, and it is giving me panic attacks. No kidding! My last memory of being in court is from 20 years ago, when my boyfriend hit me. You would think it just happened yesterday, the way I'm feeling. I was up all last night, I was so anxious! I finally found someone who told me how to order my birth cert online, and I will finally have it. I called the court and told them I had chronic pain and fatigue, and was seriously concerned that I couldn't get through it!

I found out today that I could fax a note to them asking for a continuance, so that is what I am going to do. I might even get a lawyer - I don't want points on my license, I have never had an accident and I drove in Washington, DC traffic for 25 years! I'm a law-abiding citizen - it's not like I was driving drunk or hurt anybody!

It's so hard to keep up with all the details of life, when you feel like crap, and can't think straight!


bluesbrrd - April 11

"golden years?" more like the effin' RUSTY YEARS!!! The broke down, beat up, give me a break years!!

; )


Jocelyn - April 12

I am so glad you were able to obtain your birth certificate and are able to postpone your court date. A lawyer would be a good thing if you can afford one. Perhaps one will be appointed if you cannot afford one. Don't forget to get your medical records to present to the court They need to know what type of life you live and what drove you to the decision to drive yourself. There are circumstances here that need consideration and hopefully a good judge will see it and let you off with a simple warning of not to let it happen again.

I know I would let you off :)

Keep us posted on your progress.

We are here for you!



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