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04/18/2011 01:52 AM

Those without FMS have no idea

minnettejb
minnettejb  
Posts: 24
Member

I have only been dealing with Fibro for a few months now and as you all know it changes everything. As a way for me to deal with the changes it has made in my life and how I'm feeling my mom suggested that I start writing a blog. I started one about a month ago and have only posted a few times. You can read it if you like, http://jennyminnette.blogspot.com/. I just posted another blog and when I post them I share them with my facebook friends. A few minutes after I posted this blog a friend on facebook posted a statues talking about how we should all be thankful for each day and focuses on positive things and not complain about stuff. I believe that this was about me and it really hurt my feelings. Its someone who doesn't know me all that well cause if they did they would know that I am very positive but we all have down moments. So I came here, to this site where there are others that understand how Im feeling today.
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04/18/2011 04:35 AM
Kvasconez
 
Posts: 966
Member
I'm an Advocate

I feel you, sweetie. People don't understand the challenges...I didn't understand until faced with it. My husband, God love him, thinks that I will "get better" if I stay positive. So for his sake, I will post positive things on FB or refrain from complaining. It hurts when friends and loved ones don't understand the pain and debilitation of this syndrome or how much extra effort we expend to live a semblance of a normal life. But, I have to empathize with them even though they may unknowingly hurt me because I would have never understood this world of chronic pain and FMS if I didn't suffer with it. With almost 60% of the workforce that will have some debilitating health issue at some time over the course of their careers, chance are that the individual that hurt you will be walking in similar shoes or supporting a loved one with health issues. Then it will be personal to them and they may look back at the times they were insensitive to people like you and regret it. Hang in there and you are right, this site is a great safe haven when you need to talk with folks that understand. Have a great day! Kim

04/18/2011 05:36 AM
wolfmanpark
wolfmanpark  
Posts: 2721
VIP Member

Minn a lot of people without pain have no idea what your going thru and they really dont want to hear much about it !! I myself use this board to ask questions and vent, my facebook friends are distant to me to begin with and know very little about my status. I dont even tell siblings nor extended family they are hard core as they come. And welcome to the board !!

04/18/2011 07:58 AM
RoseofSharon
RoseofSharon  
Posts: 143
Member

I read some of your blogs and you are a very strong amazing woman. We've all been there with family and friends. It can be so frustrating to not have their support when they don't know the half of what we are dealing with. Kim hit it head on - there is going to be a time when something happens to them or someone close to them and they will rethink the way they've treated people in the past. I'm not a karma believer but sometimes I like to think you get back what you give out. I have Facebook and I rarely use it to express my pain because I know exactly what you mean. I try to stay funny and positive so I can keep the friends I do have left. It's sad when you can't be honest about what you are going through but I've already lost so many to this illness I just can't afford to lose anymore! Keep us posted and we'll keep you in our prayers.

04/18/2011 08:17 AM
wolfmanpark
wolfmanpark  
Posts: 2721
VIP Member

The way I feel right now I dont care if I loose friends or not. I cant get any of them to come over and give me an massage lmao. Most of them the only time you hear from them is when they need or want something.How is that for being positive ? HEHEHE everyone have an awesome day today I get to go to the doc and let her push and drive my tender points till she finds pain !!!

04/18/2011 10:12 AM
Wintersnow

Welcome to the group. This is a great place to come because we do understand what you are dealing with. Like others, I do not tell people how I feel (except here). Even with my husband I try not to complain too much. Why? Because he wants to fix me!

You are sure to find the support that you need here.


04/18/2011 03:05 PM
minnettejb
minnettejb  
Posts: 24
Member

Thank you so much everyone! Like I said I started the blog because I don't EVER tell anyone how Im feeling and my mom thought it would be good for me and for the most part it has been. Its just that sometimes instead of smiling for everyone I want to scream in pain and frustration. I guess I find my place to come to a scream. I wish everyone a great day and week. And thanks again everyone, the support has me smiling today.

Oh and Kvasconez I love how your husband thinks being positive will heal you. Though I do think being as positive as can be is great I still want to strangle people when I do break down that say “it will be ok” and “it will all work out”. I'm working on accepting this life and I just want them to see that and accept it too.


04/18/2011 04:37 PM
DanikaM
DanikaM  
Posts: 269
Member

I feel similar. My boyfriend tends to park like a mile away from the grocery store on the days when my pain is the worst. I feel like he has no idea about how bad I hurt or anything about my anxiety. He wants to fix it but has no idea how. It's tough. I love the idea of a blog. That's awesome! I tried starting one about yoga and health but I have very little time. Also it's tough having fibro and working when your co-workers or manager have no idea what it is. I had to call out one day at my last job and the girl asked "why" in a very rude voice and I told her I was having a fibro flare up and couldnt walk and she was like "A WHAT!? WELL WHATEVER BYE!" and hung up. Thank god with my new job my manager actually has fibro so they don't have me work real late when it's the worse. Good Luck!

04/18/2011 09:59 PM
minnettejb
minnettejb  
Posts: 24
Member

DanikaM - Does your boyfriend think that making you walk that much is helpful? That makes me sad. Also what do you do for work? Im not able to work right now because my body is to weak but Im hoping that I can get back to work some day.

04/19/2011 12:54 AM
RaynaLea
RaynaLea  
Posts: 8
New Member

I too have been there when people don't understand or even want to understand for that matter, what people with chronic pain go though. I'm sorry you had the experience Sad It can get you down when that happens. My husband sometimes tries to get me to be more active on the days I know it's just NOT happening. But I feel on those days, you're body is wanted to rest for a reason. I the take the rest when I can. I too am out of work, I have been for a while now. It's hard to maintain a job, and stay a reliable employee.

Don't let people get you down, you know your body better than anyone else! Smile

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