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katrina

New member
Joined
Jan 6, 2015
Messages
2
Reason
DX FIBRO
Diagnosis
10/2013
Country
US
State
CA
Basically I am losing my entire world that I have spent 27 years creating. Where to start?

well first off my family thinks im crazy, my brother does not believe my condition ONE bit and the times I have tried to "educate" him, he makes jokes which is extremely hurtful. My mom is supermom so she thinks "oh just get over it, your'e fine"

my boyfriend of almost 2 years whom I live with has been a trooper until my recent decline with fibro and CFS, although he ACTUALLY sees and believes my symptoms he's at his breaking point of seeing me in bed every chance I get.

I'm on the verge of getting fired or laid off because I am unable to produce to their standards. I just cant keep up and im scared of the outcome

I have lost several friends specifically due to my FM/CFS. I just cant keep up with friendships anymore. I have literally isolated myself from work straight to my bed.

I cant take care of myself anymore, let alone my boyfriend, his kids and our dog.

I am SICK AND TIRED of being sick and tired every.single.day.

What is the point of living? I have no "real" relationships with anyone, im financially not ok if I lose my job, my family-my blood doesnt even believe me, I dont even like the person I've become since being diagnosed 2 years ago. Seriously what is the point of living if all i do is sleep and am in pain? Its basically like being a vegetable in a coma. PULL THE LIFE SUPPORT OVER HERE!
 
Hi Katrina,
My family didn't believe me at first either, especially my Mom. This is extremely hurtful and isolating. But, you cannot give up. I KNOW it is hard-but you must keep on trying to find ways to cope. I eventually learned that I was the best judge of what I can tolerate- be it pain, exhaustion, other people and began to put myself first. I limit what I tell people....mostly to preserve my sanity. I take one day at a time and relish the good ones and sleep through the bad ones. Your boyfriend sees what you are going through and has stuck with you so he must care for you. If there is a local fibro support group, it would be helpful for you to find people to talk to who can sympathize and offer practical suggestions. In the meantime, please continue to let us know how you are doing. God bless and take care.
 
Tucker's mom gave good advise. We do lose a lot of what our lives used to be, but, in time, can re-create another. This is hard on our loved ones, I try to give them lots of room. How can they possibly understand? You are still unique and special, you CAN live with this, as many do. Take a deep breath-or many deep breaths. God bless you real special tonight.
 
We all get like this. I've offended said try this ,ask your brother if he has ever had a headache then ask him to prove it.and say there u go that what it's like trying to get ppl who don't have this to believe me.
 
Been there and felt that way as well. As has been offered and sorry it's not original but take a deep breath. Make certain to do something nice for yourself hot bath whatever you like that is the key. Vent to us whenever you need this is the place to do it. Good luck...Mike
 
I have to agree, keep on keeping on. It's been 9 months after being diagnosed with fibro. I've been through all the same challenges, my challenge right now is (not) trying to convince my family of the extent of "the" illness. Notice I didn't say (MY) fibromialgia, why is that? Because....when I claim it as mine.....I'm accepting it as such. Am I better than the next person NOT at alllll, I just understand things diffrent, A Disease does not own me....nor I it! So do what you can my friend, stay close to this support group and,,,maybe a few others. As far as Their , friends , family, or gossips. One word. CLUELESS!
Letting go is a hard thing, once you relax, which ironically is one of the most important things you can do, you will get better.�� I think this blasted fibro can turn a family against one another.
I've gone for 5 months feeling crappy, the last few days have been wonderful, so I'm making the best of it. I've had to make some gut wrenching desisions, really hard ones, that involve family, and saying NO! I've been a yes girl all my life, even if it meant my health.
Hang on my friend!
Some ideas....
Find a good support group outside your usual circle.

You will be in my prayers!
Find a "good Book"
PM. Your NOT loosing your mind.
 
Hi Katrina,

I also wanted to say I am right there with you. It is a very scary lonely place when you feel misundertood. I often feel like I need to explain to people including my family or convince them of my condition, and all I can say is I find it exhausting. The illness is invisible which makes it that much more difficult. We don't have a broken leg to show someone or anything visible. We all feel your pain and are right there beside you for support. I have found this site to be a life saver for me so far. So many supportive people who actually get it.

The fear of future and loss of career is oh so familiar to me. I stopped working 8 months ago. Its a scary place to be, I am blessed to have been approved for disability, although it comes with its stresses also. I also have a tendency to isolate myself. Its hard when you feel so crappy. I get it. I feel socially scared that people will think that I am feeling fine if I don't look like a total wreck. I think its shocking how good we can look or act to disguise how we actual feel inside.

Be good to yourself, and don't be afraid to tell your friends how you feel. If they are true friends they will understand same goes for family. I am one to preach and should take my own advice haha.

I have felt like life isin't worth living aswell if its like this, but there has to be more to life than this and I think it is important to be determined to find a resolution..... Never stop looking for answers. And look into disability and see what your options are.

Please keep your chin up, and message me whenever you need to.

Lyndsey
 
I found that if I could come up with examples of other illnesses, like the flu for our aches, bad headache, which I live with almost daily, if they've had pneumonia then they have had severe fatigue. It's a great one. First starting to do a rigerous workout, mirrors the more intense pain we go through. You may not get the opportunity, but if you do, throw a couple out there. Remind family that the difficult part of this illness is that we LOOK fine. Don't let them make you feel less than. You don't deserve to feel less than. Do what you can. Ignore the jabs don't push to do more than you truly can. Hang in there..... Gentle hugs....
 
Stay strong! Family will never believe you.the support would be nice to have. Focus on the important things in your life. Live life hour by hour and find your trigger for the pain.sounds like your family is keeping you down.
Do research on fibro. Get control of yourself. You can do more than you think. Come to terms with your family not understanding. Let it go and try to make a good hour by hour by day by day for yourself. I grew up with a family that belived you should just walk it off. So glad , I found my wife as she all I have and need. You can do this please know your not crazy and not alone. We are here for you! Stay well��!
 
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